Tick Boot Camp

Could changing how antibiotics are administered help address some of the biggest challenges in treating chronic and disseminated Lyme disease? What if the timing, combination, and delivery of antibiotics matter as much as the medications themselves?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Louis C. Teulières, MD, PhD, a French physician and Lyme disease researcher, to explore his approach to sequential antibiotic therapy, Borrelia persistence, biofilms, neurological Lyme disease, antibiotic combinations, and treatment-related inflammation.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation follows Dr. Teulières' presentation, Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD.

Dr. Teulières challenges conventional approaches to prolonged antibiotic treatment and explains why he believes carefully structured treatment sequences may offer advantages for selected patients with complex tick-borne illnesses.

Rather than administering antibiotics continuously for extended periods, he describes a strategy involving shorter treatment windows, planned breaks, and carefully selected antibiotic combinations.

He also discusses the importance of matching antibiotics to the tissues affected by infection, considering the blood-brain barrier in neurological Lyme disease, and addressing potential complications involving the gut microbiome, liver, and kidneys.

Rich and Dr. Teulières explore three major questions:

• Can sequential antibiotic treatment help clinicians better evaluate treatment responses?
• Could planned treatment breaks reduce some of the burdens associated with prolonged antibiotic exposure?
• How might clinicians select antibiotic combinations based on bacterial behavior, tissue penetration, and patient symptoms?

The central message is that Lyme disease treatment requires thoughtful clinical decision-making, individualized care, and an understanding of both the potential benefits and risks of antimicrobial therapy.

The sequential antibiotic approach discussed in this interview represents Dr. Teulières' clinical perspective. Its effectiveness and safety compared with established Lyme disease treatment regimens have not been demonstrated in high-quality comparative clinical trials.

Meet Dr. Louis C. Teulières, MD, PhD

Dr. Louis C. Teulières, MD, PhD, is a French physician and researcher whose work includes infectious diseases, complex chronic illness, and approaches to treating Lyme and other tick-borne diseases.

At the 2025 ILADS Conference, Dr. Teulières presented Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD.

His presentation explores the use of antibiotic combinations and sequential treatment strategies in patients with complex tick-borne illnesses.

In this interview, he explains his clinical reasoning and discusses why he believes antibiotic timing, medication selection, and treatment intervals deserve greater attention.

Dr. Teulières has been a returning guest on Tick Boot Camp, sharing his perspectives on Lyme disease treatment and the challenges of managing complex infections.

What Is Sequential Antibiotic Therapy for Lyme Disease?

One of the main topics of the interview is Dr. Teulières' proposed sequential antibiotic treatment strategy.

He distinguishes this approach from three other methods of administering antibiotics:

Continuous treatment: Antibiotics are administered without planned breaks for a prescribed period.

Pulsed treatment: Antibiotics are administered intermittently according to a predetermined schedule.

Rotational treatment: Different antibiotics are used in rotation.

Sequential treatment: Dr. Teulières describes administering selected antibiotic combinations for a defined period, followed by a treatment break, with subsequent treatment decisions informed by the patient's response.

During the interview, he discusses an example involving approximately 14 days of antibiotic therapy followed by a planned break of approximately 14 days.

He explains that these intervals may allow clinicians to assess symptoms, review treatment tolerance, and adjust medication combinations.

Dr. Teulières believes the strategy may also provide opportunities for supportive care between antibiotic courses.

However, this specific schedule has not been established as an effective or safer treatment protocol for persistent Lyme disease through controlled clinical trials.

Patients should never independently interrupt or modify prescribed antibiotic treatment.

Why Dr. Teulières Questions Long-Term Continuous Antibiotics

Dr. Teulières explains that he has concerns about prolonged, uninterrupted antibiotic exposure.

He identifies several potential challenges:

• Antibiotic-associated adverse effects
• Disruption of the intestinal microbiome
• Selection of antibiotic-resistant organisms
• Difficulty identifying which medications are producing benefits
• Possible bacterial survival mechanisms
• Additional physical stress during treatment

He believes these concerns warrant consideration of alternative dosing strategies.

His proposed sequential approach is intended to create opportunities for reassessment rather than maintaining the same treatment continuously.

The discussion highlights an important distinction between the established effectiveness of antibiotics for Lyme disease and ongoing debates about additional antimicrobial treatment for persistent symptoms after standard therapy.

Borrelia Persistence: Round Bodies, Biofilms, and Tissue Survival

Rich asks Dr. Teulières about the ability of Borrelia bacteria to survive under challenging conditions.

Dr. Teulières describes several mechanisms that he believes may contribute to bacterial persistence.

Round-Body Forms

He explains that Borrelia can change its morphology under certain environmental conditions.

These changes, sometimes described as round-body forms, have been observed in laboratory research.

Dr. Teulières believes such changes may influence bacterial susceptibility to antimicrobial treatment.

Biofilms

Dr. Teulières also discusses biofilms, which are structured communities of microorganisms surrounded by protective material.

Biofilms can influence how certain microorganisms respond to environmental conditions and antimicrobial exposure.

He raises the possibility that biofilm-related mechanisms could complicate treatment in some patients.

Tissue Localization

The interview explores whether bacteria occupying certain tissues may be less accessible to particular medications.

Dr. Teulières emphasizes that antibiotic selection should account for where an infection is located.

Although Borrelia morphology, biofilm formation, and persister states are active research topics, their role in persistent human Lyme disease symptoms remains incompletely understood.

Laboratory findings do not establish that these mechanisms explain every case of persistent symptoms or that sequential antibiotic treatment overcomes them in patients.

Antibiotic Resistance vs. Bacterial Persistence

Dr. Teulières discusses the possibility that prolonged antibiotic exposure may contribute to the selection of resistant organisms.

He also describes bacterial forms that may survive exposure through mechanisms distinct from conventional antibiotic resistance.

These concepts are related but not identical.

Antibiotic resistance involves mechanisms that allow bacteria to withstand antimicrobial activity.

Antibiotic tolerance or persistence can involve survival during treatment without conventional inherited resistance.

Dr. Teulières believes understanding these differences may help clinicians develop more targeted approaches.

The clinical significance of proposed Borrelia persister forms remains an area of investigation, and the interview does not establish that sequential therapy prevents antibiotic resistance.

Why Dr. Teulières Recommends Treatment Breaks

A central feature of Dr. Teulières' proposed strategy is incorporating planned intervals between antibiotic courses.

He identifies three potential advantages.

1. Allowing Time for Recovery

Dr. Teulières believes treatment breaks may allow patients to recover from some medication-related burdens.

He discusses the liver and kidneys, which play essential roles in processing and eliminating many medications and their metabolites.

He also describes the potential importance of reducing treatment-related discomfort.

2. Evaluating Treatment Response

Dr. Teulières believes a defined treatment period followed by observation may help clinicians determine whether a particular antibiotic combination is producing meaningful changes.

He suggests monitoring whether symptoms improve, remain unchanged, or return during a treatment break.

3. Adjusting Antibiotic Combinations

Sequential treatment may also provide opportunities to reassess the medications being used.

Dr. Teulières proposes adjusting combinations based on the patient's symptoms, suspected infections, and clinical response.

These are the potential advantages he describes, not benefits established through comparative clinical trials.

Scheduled antibiotic breaks have not been proven to provide a specific detoxification benefit or prevent organ injury.

What Happens When Antibiotics Kill Bacteria?

Rich asks Dr. Teulières why some patients experience increased symptoms during antimicrobial treatment.

Dr. Teulières describes how bacterial components can stimulate inflammatory responses as organisms are affected by treatment.

He discusses microbial debris and inflammatory molecules that may contribute to discomfort.

The conversation connects this process to concerns about treatment-related inflammation.

However, symptom worsening during Lyme disease treatment is not automatically evidence of bacterial die-off.

Medication reactions, allergic responses, unrelated illnesses, and other complications can produce similar symptoms.

A true Jarisch-Herxheimer reaction is a recognized acute inflammatory response associated with treatment of certain infections, including some spirochetal diseases.

Severe or persistent symptoms during treatment require medical evaluation rather than an assumption that the medication is working.

Bacteriostatic vs. Bactericidal Antibiotics

Dr. Teulières explains why he considers the mechanisms of different antibiotics when selecting treatment combinations.

Bacteriostatic Antibiotics

Bacteriostatic antibiotics primarily inhibit bacterial growth under particular conditions.

Some interfere with bacterial protein synthesis.

Dr. Teulières discusses azithromycin as an example.

Bactericidal Antibiotics

Bactericidal antibiotics kill susceptible bacteria under particular conditions.

Different medications accomplish this through different mechanisms, including disruption of bacterial cell wall synthesis.

Dr. Teulières discusses ceftriaxone as an example.

Why Combine Both Types?

Dr. Teulières proposes combining selected bacteriostatic and bactericidal medications.

He believes that targeting bacteria through different mechanisms may improve treatment effectiveness in certain circumstances.

He discusses combinations such as azithromycin and ceftriaxone to illustrate his approach.

However, combining these antibiotic categories does not automatically improve clinical outcomes.

Some combinations may introduce additional adverse effects or drug interactions, and certain combinations can interfere with one another.

Antibiotic selection must be based on the specific infection, patient characteristics, and available evidence.

Selecting Antibiotics Based on Tissue Penetration

Another important concept in the interview is the distribution of antibiotics throughout the body.

Dr. Teulières emphasizes that different medications reach different tissues at different concentrations.

He discusses selecting antibiotics according to the location of suspected infection.

Relevant considerations may include:

• Skin and connective tissue involvement
• Joint manifestations
• Neurological symptoms
• Central nervous system infection
• The presence of other diagnosed infections
• Medication absorption and distribution
• Patient-specific contraindications

Dr. Teulières believes these factors are especially important in patients with complex or disseminated disease.

The broader medical principle is that treatment selection should account for both the organism being treated and the anatomical site of infection.

Neurological Lyme Disease and the Blood-Brain Barrier

Rich and Dr. Teulières discuss how treatment decisions may differ when Lyme disease affects the nervous system.

Dr. Teulières emphasizes the importance of selecting antibiotics capable of reaching the relevant site of infection.

He identifies several antibiotic families and discusses their potential tissue penetration.

The blood-brain barrier helps regulate which substances enter the central nervous system.

Certain medications penetrate this barrier more effectively than others, depending on factors such as drug properties and inflammation.

However, neurological symptoms alone do not establish central nervous system infection.

Similarly, the ability of a medication to penetrate the blood-brain barrier does not automatically make it effective or appropriate for Lyme neuroborreliosis.

Treatment depends on the specific neurological manifestation and clinical evaluation.

For additional education, listen to Tick Boot Camp's interview with Dr. Medeya Tsnobiladze on the neurological and cardiovascular impacts of Lyme disease.

Oral vs. Intravenous vs. Intramuscular Antibiotics

Dr. Teulières discusses the advantages and limitations of different antibiotic administration routes.

Oral antibiotics are taken by mouth and absorbed through the gastrointestinal tract.

Intravenous antibiotics are delivered directly into a vein.

Intramuscular antibiotics are administered through injection into muscle tissue.

He explains that his proposed treatment strategy may involve different administration routes depending on the patient's symptoms and clinical circumstances.

Dr. Teulières expresses concern about the gastrointestinal effects of prolonged oral antibiotic use.

He also discusses considering injectable medications for certain neurological presentations.

However, intravenous or intramuscular antibiotics are not inherently more effective than oral medications.

For many manifestations of Lyme disease, appropriately selected oral antibiotics are effective.

Injectable therapies can introduce additional risks, including line infections, blood clots, and administration complications.

Protecting the Gut Microbiome During Lyme Disease Treatment

Dr. Teulières emphasizes the importance of considering intestinal microbiome health during antibiotic treatment.

The gut microbiome contains diverse microorganisms that contribute to digestion, metabolism, and other biological processes.

Antibiotics can disrupt these microbial communities.

Potential consequences may include gastrointestinal symptoms and antibiotic-associated infections.

Dr. Teulières believes his proposed treatment breaks may provide opportunities for the microbiome to recover.

However, evidence has not established that his sequential approach reliably prevents microbiome disruption.

The effects of antibiotics depend on the specific medication, duration, dose, and patient.

Treating Lyme Disease and Co-Infections

The conversation also addresses the possibility of multiple infections contributing to complex illness.

Dr. Teulières explains that clinicians may need to consider bacterial, parasitic, or viral conditions when evaluating patients.

He believes sequential treatment strategies could provide opportunities to address different diagnosed infections at different times.

However, the presence of Lyme disease does not automatically establish additional infections.

Each suspected infection requires appropriate evaluation.

Treatment choices should be based on clinical findings and reliable diagnostic information rather than assuming that every symptom represents an additional pathogen.

Can Antibiotics Have Antiviral Effects?

Dr. Teulières briefly discusses research into possible antiviral effects of certain antibiotic classes.

He specifically mentions macrolides.

Some antibiotics have demonstrated antiviral or immunomodulatory activity in laboratory settings.

However, these findings do not establish that antibiotics are effective clinical treatments for viral infections.

Antibiotics should not be used to treat viral illnesses without a specific evidence-supported indication.

This portion of the interview reflects an area of scientific interest rather than a validated treatment recommendation.

Intravenous Immunoglobulin and Complex Chronic Illness

Dr. Teulières also discusses the possibility of using intravenous immunoglobulin, or IVIG, alongside other treatments in selected patients.

IVIG is made from pooled antibodies collected from donated human plasma.

It is used for certain immune deficiencies, autoimmune conditions, and neurological disorders.

Dr. Teulières describes how intravenous treatment may allow clinicians to coordinate different therapies when medically appropriate.

However, IVIG is not a routine or established treatment for Lyme disease itself.

Its use requires a specific medical indication and careful consideration of risks.

Sequential Antibiotics and the Rehabilitation Process

Toward the end of the interview, Rich connects Dr. Teulières' approach to Tick Boot Camp's broader observations about chronic illness recovery.

Rich emphasizes that the goal of treatment should not be limited to reducing an infectious burden.

Patients may also need to recover from the physical and emotional consequences of prolonged illness.

He discusses how aggressive interventions can create additional challenges if they produce significant adverse effects or functional setbacks.

Dr. Teulières agrees that treatment should be used carefully and thoughtfully.

Their conversation reinforces the importance of balancing medical treatment with patient safety, tolerability, and quality of life.

How Does Dr. Teulières' Approach Compare With Lyme Disease Guidelines?

Sequential antibiotic therapy, combination regimens, and treatment strategies for persistent symptoms remain subjects of debate and research.

The specific sequential approach described by Dr. Teulières has not been established as superior to guideline-supported Lyme disease treatment through high-quality comparative clinical trials.

Professional organizations also differ in their recommendations for managing persistent symptoms following Lyme disease treatment.

ILADS treatment guidelines emphasize individualized clinical judgment and shared decision-making.

Other guidelines recommend against additional antibiotics for persistent nonspecific symptoms when there is no objective evidence of reinfection or treatment failure.

These differences underscore the need for continued research into persistent symptoms, treatment effectiveness, and long-term patient outcomes.

Learn More About Dr. Louis Teulières' ILADS Presentation

Dr. Teulières presented Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD at the 2025 ILADS Conference.

His presentation explores the rationale for sequential antibiotic strategies and combination treatment approaches in complex tick-borne disease.

The interview offers a conversational overview of his clinical thinking, including how he approaches medication selection, treatment timing, and patient response.

For additional conference interviews, visit Tick Boot Camp's LIVE from ILADS podcast series.

Key Takeaways

• Dr. Louis Teulières proposes a sequential antibiotic strategy. His approach involves defined treatment periods followed by planned breaks.
• He questions prolonged, uninterrupted antibiotic exposure. His concerns include adverse effects, microbiome disruption, and antibiotic resistance.
• Borrelia persistence is a central research topic. He discusses round-body forms, biofilms, and tissue localization.
• Antibiotics have different mechanisms of action. Dr. Teulières describes combining bacteriostatic and bactericidal medications.
• Tissue penetration influences treatment selection. The anatomical site of infection matters when choosing an antibiotic.
• Neurological Lyme disease requires careful evaluation. Blood-brain barrier penetration is one consideration, but not the only factor.
• Oral and injectable antibiotics have different benefits and risks. The route of administration should be chosen based on clinical need.
• Gut microbiome health matters. Antibiotic exposure can affect intestinal microbial communities.
• Treatment breaks are not proven detoxification methods. Their proposed benefits require further research.
• Co-infections require individual assessment. Different pathogens may require different treatment approaches.
• Rehabilitation is an important consideration. Managing adverse effects and restoring function are relevant to overall recovery.
• More research is needed. The safety and effectiveness of Dr. Teulières' sequential regimen have not been established through high-quality comparative clinical trials.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this interview features Dr. Louis C. Teulières, MD, PhD, a French physician and researcher discussing his presentation on sequential antibiotic therapy.

Rich and Dr. Teulières explore the challenges of treating complex Lyme disease, including bacterial persistence, antibiotic combinations, tissue penetration, neurological involvement, and the potential advantages and limitations of alternating treatment periods with breaks.

The conversation provides insight into Dr. Teulières' clinical approach and raises important questions about how Lyme disease treatment strategies might be evaluated and improved.

Explore more physician interviews and conference conversations through Tick Boot Camp's LIVE from ILADS podcast series.

Do you have to feel worse before you get better from Lyme disease? And could pushing through severe Herxheimer reactions actually make recovery more difficult?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Casey Kelley, MD, a functional medicine physician, Lyme disease survivor, and founder of Case Integrative Health in the Chicago area, for an important conversation about Jarisch-Herxheimer reactions, Lyme disease treatment, inflammation, neuroplasticity, and the physical and emotional rehabilitation involved in chronic illness recovery.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the discussion explores one of the most debated questions in the Lyme disease community: Is a Herxheimer reaction a necessary sign that treatment is working, or can excessive inflammation interfere with healing?

Dr. Kelley draws on her experience as both a physician and former Lyme disease patient to explain what a Herxheimer reaction is, why symptoms may temporarily worsen during treatment, and why she believes aggressive treatment should not come at the expense of a patient's ability to function.

Rich also introduces Tick Boot Camp's PARM healing framework: Prehabilitation, Assist, Rehabilitate, and Maintenance, which reflects patterns observed through hundreds of patient interviews.

Together, they explore why recovery is rarely linear, why patients need individualized treatment plans, and how nervous system regulation and neuroplasticity may play a role in rehabilitation.

The conversation also celebrates an encouraging milestone: Dr. Kelley is expanding Case Integrative Health to improve patient access to care.

Meet Dr. Casey Kelley, MD

Dr. Casey Kelley, MD, is a functional medicine physician and founder of Case Integrative Health, a Chicago-area practice focused on complex chronic illnesses.

Her clinical interests include Lyme disease and associated infections, immune dysfunction, inflammation, and integrative approaches to patient care.

Dr. Kelley also brings personal experience to her work.

As a former Lyme disease patient, she understands what it feels like to experience debilitating symptoms while appearing outwardly healthy.

During the interview, she recalls living with postural orthostatic tachycardia syndrome (POTS), which made standing and everyday activities difficult.

Her recovery journey helped shape her approach to individualized treatment and rehabilitation.

Dr. Kelley has appeared on Tick Boot Camp multiple times, sharing her experiences and insights into chronic illness recovery.

Case Integrative Health Is Expanding

Rich begins by congratulating Dr. Kelley on the growth of her medical practice.

At the time of the interview, Case Integrative Health had two locations, with plans to open a third.

Dr. Kelley explains that the expansion is primarily about improving access to care.

Her practice offers intravenous therapies, which may require patients to attend appointments regularly.

In the Chicago area, traffic and travel distances can make frequent visits challenging, especially for people experiencing significant fatigue or other chronic symptoms.

She hopes additional locations will reduce some of those barriers.

The conversation highlights an important issue for people with chronic illness: treatment access involves more than finding a healthcare provider. Transportation, physical limitations, appointment frequency, and financial resources can all affect a patient's ability to receive care.

What Is a Jarisch-Herxheimer Reaction?

One of the main topics of the interview is the Jarisch-Herxheimer reaction, commonly called a Herx.

Dr. Kelley explains that the reaction was originally described in patients receiving treatment for syphilis, another infection caused by spirochete bacteria.

A Jarisch-Herxheimer reaction is an acute inflammatory response that can occur after antimicrobial treatment for certain bacterial infections.

In Lyme disease, it may involve a temporary worsening of symptoms after antibiotics are started.

Dr. Kelley describes patients experiencing:

• Increased fatigue
• Worsening pain
• Flu-like symptoms
• Generalized discomfort
• A feeling resembling a severe hangover
• Temporary worsening of existing symptoms

She explains that these reactions can vary considerably between individuals.

Some people experience relatively mild discomfort, while others report more significant symptoms.

Importantly, not every symptom flare during treatment is a Jarisch-Herxheimer reaction. Medication side effects, allergic reactions, disease progression, and other medical complications can also cause worsening symptoms.

Is Herxing a Good Sign That Lyme Treatment Is Working?

Rich asks Dr. Kelley about a common belief in the Lyme disease community: that experiencing a strong Herxheimer reaction means treatment is successfully eliminating an infection.

Some patients believe they need to push through increasingly severe symptoms to make progress.

Dr. Kelley challenges that assumption.

She explains that although inflammatory reactions can occur during treatment, more intense symptoms do not necessarily mean better outcomes.

In her clinical approach, the goal is not to make patients as uncomfortable as possible.

Instead, she tries to balance treatment with the patient's ability to tolerate it.

A severe Herxheimer reaction is not required for successful Lyme disease treatment, and the intensity of a reaction is not a reliable measure of treatment effectiveness.

Dr. Kelley emphasizes that treatment should be individualized and that patients should communicate significant symptom changes to their healthcare professionals.

Can You Recover From Lyme Disease Without Herxing?

Dr. Kelley describes patients who improve without experiencing noticeable Herxheimer reactions.

She acknowledges that some people become concerned when treatment does not cause an obvious symptom flare.

They may wonder whether their medication is working or whether they need a more aggressive approach.

Dr. Kelley explains that she has seen patients make progress without experiencing significant treatment-related worsening.

Her message is encouraging for patients who fear they must endure severe discomfort to recover.

Not experiencing a Herxheimer reaction does not mean treatment is failing.

Likewise, experiencing a reaction does not establish that a treatment is effective.

Treatment response should be evaluated through appropriate clinical assessment rather than symptom worsening alone.

How Much Herxing Is Too Much?

Rich asks Dr. Kelley where she draws the line between manageable treatment-related discomfort and symptoms that warrant changing the treatment plan.

Dr. Kelley explains that she becomes concerned when patients experience severe functional limitations.

Examples include being unable to get out of bed, care for children, complete essential activities, or think clearly.

She believes prolonged, debilitating symptom flares should prompt reassessment rather than automatic encouragement to push harder.

In the interview, Dr. Kelley discusses supportive approaches used in her practice, including measures intended to address discomfort and inflammation.

However, supplements, detoxification products, and other supportive therapies should not be assumed to prevent or treat a true Jarisch-Herxheimer reaction.

Severe, persistent, or unexpected symptoms during treatment require medical evaluation. Patients should not independently stop, increase, or reduce prescribed medications without appropriate clinical guidance.

Why More Aggressive Treatment Is Not Always Better

Dr. Kelley explains that patients differ significantly in their tolerance of medications and other interventions.

Some patients can tolerate complex treatment regimens.

Others experience substantial symptoms or adverse effects from relatively small changes.

She emphasizes that treatment decisions should account for the individual patient's medical history, symptoms, functional status, and response.

Rich asks whether reducing treatment intensity might slow the process of addressing an infection.

Dr. Kelley suggests that treatment intensity and overall recovery are not always the same thing.

Her concern is that excessive symptom burden may create additional challenges that patients must overcome during rehabilitation.

The broader takeaway is that successful care requires balancing effectiveness, safety, and tolerability.

Patients should not interpret worsening symptoms as a reason to continue an intervention without reassessment.

Why Dr. Kelley's Personal Lyme Disease Experience Matters

Rich asks whether physicians who have personally experienced Lyme disease bring a different perspective to patient care.

Dr. Kelley believes lived experience can deepen a clinician's empathy and understanding.

She recalls struggling to sit upright, think clearly, and complete ordinary activities while appearing healthy to others.

Those experiences helped her understand how difficult invisible illnesses can be.

However, she also emphasizes that physicians do not need to have experienced a particular disease to treat it effectively.

She believes the most important qualities include clinical knowledge, compassion, careful observation, and the ability to tailor care to each patient.

Her perspective highlights the value of combining medical expertise with genuine understanding of the patient's experience.

Why Lyme Disease Recovery Is Not Linear

Rich and Dr. Kelley discuss how recovery from prolonged illness often involves periods of progress followed by setbacks.

Some patients improve steadily.

Others experience fluctuating symptoms, changing functional abilities, or periods when additional medical evaluation is needed.

Dr. Kelley explains that these experiences can be especially frustrating when patients expect recovery to follow a predictable timeline.

She encourages recognizing progress even when it occurs gradually.

The discussion also emphasizes that patients may need different forms of support at different stages of their journey.

Medical treatment, physical rehabilitation, psychological support, and ongoing prevention can all have roles depending on the individual's circumstances.

Introducing Tick Boot Camp's PARM Healing Framework

Rich introduces a framework developed from patterns observed through Tick Boot Camp's extensive patient interviews.

The framework is called PARM, representing four interconnected stages of recovery.

P — Prehabilitation

Prehabilitation involves preparing and supporting the patient before or alongside more intensive treatment.

Depending on the person's medical needs, this may include addressing nutritional concerns, sleep disturbances, physical limitations, or other health conditions.

The goal is to improve readiness and tolerance for appropriate medical care.

A — Assist

Rich uses the term Assist to emphasize supporting the body's response to illness rather than viewing treatment exclusively as a battle against microbes.

For infections requiring antimicrobial therapy, appropriate medications remain essential.

Other supportive interventions may help address symptoms or coexisting health concerns.

R — Rehabilitate

Rehabilitation involves addressing functional limitations that may remain during or after treatment.

This can include physical conditioning when medically appropriate, occupational rehabilitation, and support for cognitive or emotional challenges.

For some patients, rehabilitation may require a gradual, individualized approach.

M — Maintenance

Maintenance focuses on sustaining improvements, managing ongoing health needs, and reducing preventable risks.

For Lyme disease, this includes continued tick bite prevention and prompt evaluation of possible reinfection.

Rich emphasizes that the framework is not necessarily linear.

Patients may need to revisit different aspects of care as their circumstances change.

PARM is Tick Boot Camp's observational framework, not a clinically validated Lyme disease treatment protocol.

Celebrating Recovery: Dr. Kelley's Disco Balls

Dr. Kelley shares a tradition from her medical practice.

Her team refers to patients who have made meaningful progress in rehabilitation as disco balls.

The name reflects their desire to celebrate recovery milestones.

Dr. Kelley explains that working with complex chronic illness can be emotionally demanding for patients and healthcare professionals alike.

Recognizing meaningful improvements helps reinforce hope and acknowledges the work patients have invested in their recovery.

For someone who has spent years struggling with basic activities, being able to walk, exercise, work, or participate in family life can represent an extraordinary achievement.

Dr. Kelley believes these milestones deserve celebration.

Recovering From POTS: Learning to Trust the Body Again

Dr. Kelley shares a personal example from her experience with POTS.

At one point, standing was frightening because she feared fainting and injuring herself.

Even after her physical condition improved, she needed time to regain confidence in activities that had previously felt unsafe.

She describes gradually becoming more comfortable standing, walking, and eventually returning to exercise.

Her experience illustrates how recovery from a prolonged medical condition can involve both physical and emotional adjustment.

The fear of symptoms returning may persist even after substantial improvement.

For patients with POTS or other conditions involving exercise intolerance, rehabilitation must be adapted to their medical status and should not involve pushing through unsafe symptoms.

Fear of Relapse After Lyme Disease

Rich discusses another challenge that can arise after significant recovery: the fear of becoming seriously ill again.

He shares Tick Boot Camp co-founder Matt Sabatello's experience of progressing from long-distance running to being bedbound during his Lyme disease journey.

After a prolonged period of illness, Matt gradually regained significant physical function and returned to running.

Rich celebrates that progress while acknowledging that the fear of relapse can remain.

The discussion highlights an important reality for people recovering from chronic illness.

Regaining physical abilities does not automatically eliminate the emotional impact of having lost them.

Dr. Kelley recognizes that rebuilding confidence may take time.

Supportive rehabilitation can help patients gradually resume activities when medically appropriate.

Neuroplasticity and Brain Retraining During Rehabilitation

Rich asks Dr. Kelley about the role of neuroplasticity in recovery.

Neuroplasticity refers to the nervous system's ability to adapt and change through experience, learning, and repeated activity.

Dr. Kelley discusses how prolonged pain, illness, and stressful experiences may influence patterns of attention, fear, and symptom perception.

She believes some patients may benefit from learning to respond differently to certain sensations and situations.

Rich and Dr. Kelley emphasize that these experiences do not mean symptoms are imaginary.

Pain and other symptoms are real, even when nervous system processes influence how they are experienced.

Research supports certain psychologically informed approaches for managing chronic pain and related functional difficulties.

However, brain retraining is not an established cure for Lyme disease, persistent infection, POTS, or all symptoms following treatment.

Its potential role should be evaluated alongside appropriate medical assessment and individualized care.

For related conversations, explore Tick Boot Camp's interview with Ben Ahrens about neuroplasticity.

Why Medical Validation Matters When Discussing Brain Retraining

Dr. Kelley acknowledges that conversations about the brain and nervous system can be difficult for people who have experienced medical dismissal.

Many patients have previously been told that their symptoms are psychological or that nothing is physically wrong.

As a result, suggestions involving brain retraining may feel invalidating.

Dr. Kelley makes an important distinction.

She recognizes that patients can experience genuine physiological illness while also benefiting from strategies that address pain processing, fear, stress responses, or functional limitations.

These approaches are not mutually exclusive.

A patient can need medical treatment for a physical condition and also benefit from supportive rehabilitation.

The key is ensuring that brain-based interventions are not used to dismiss symptoms or discourage further medical investigation when appropriate.

Finding Purpose After Chronic Illness

Rich and Dr. Kelley also discuss how difficult health experiences can change a person's perspective on life.

For some patients, recovery creates opportunities to reconsider priorities, relationships, and personal goals.

Rich reflects on how the Lyme disease journey has influenced Tick Boot Camp's advocacy mission.

Dr. Kelley's experience similarly shaped her decision to help others navigating complex illnesses.

They acknowledge that finding meaning can be an important part of some people's recovery stories.

However, patients should not feel obligated to discover a greater purpose in their suffering.

Everyone deserves compassionate care regardless of how they interpret their illness.

How to Learn More About Dr. Casey Kelley

Dr. Kelley is the founder of Case Integrative Health, serving patients in the Chicago area.

Her practice focuses on functional and integrative approaches to complex chronic illness.

During the interview, she discusses the practice's expansion and its efforts to improve access to services for patients who may struggle with frequent travel.

Visit Case Integrative Health for information about the medical team, available services, locations, and appointments.

Key Takeaways

• A Herxheimer reaction is an inflammatory response associated with treatment of certain infections. It can cause temporary worsening of symptoms.
• Herxing is not required for recovery. Patients can improve without experiencing a noticeable Jarisch-Herxheimer reaction.
• More severe symptoms do not prove treatment is more effective. Significant or prolonged worsening should prompt medical reassessment.
• Treatment must be individualized. Patients differ in medical history, medication tolerance, symptoms, and rehabilitation needs.
• Dr. Kelley's lived experience informs her care. Her history with Lyme disease and POTS gives her personal insight into invisible illness.
• Recovery may involve several overlapping stages. Tick Boot Camp's PARM framework describes prehabilitation, assistance, rehabilitation, and maintenance.
• Physical rehabilitation can be important. Regaining strength, mobility, and confidence may take time.
• The fear of relapse can persist after improvement. Emotional recovery may require support alongside physical rehabilitation.
• Neuroplasticity may contribute to symptom management. Evidence varies by condition, and brain retraining should not replace medical treatment.
• Progress deserves celebration. Dr. Kelley's disco ball tradition recognizes meaningful patient recovery milestones.
• Hope and realistic expectations can coexist. Improvement is possible, but recovery pathways differ and no treatment guarantees a particular outcome.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Casey Kelley, MD, founder of Case Integrative Health and a returning Tick Boot Camp guest.

Rich and Dr. Kelley discuss Jarisch-Herxheimer reactions, the risks of overly aggressive treatment, individualized Lyme disease care, rehabilitation, neuroplasticity, and the importance of celebrating recovery milestones.

The interview also introduces Tick Boot Camp's PARM framework and explores why healing from prolonged illness may involve much more than addressing an infection alone.

Discover additional physician interviews and conference conversations through Tick Boot Camp's LIVE from ILADS podcast series.

What if healing from chronic Lyme disease involves more than treating infections—and includes learning how to reconnect with your body, regulate your nervous system, and support your natural capacity for recovery?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Jacey Goddard, DO, a triple board-certified osteopathic physician from Maine, to explore the connection between Lyme disease, nervous system dysregulation, chronic pain, medical trauma, mind-body healing, and neuroplasticity.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation challenges the idea that recovering from complex chronic illness is simply about finding the next medication, supplement, or treatment protocol.

Dr. Goddard shares how her own difficult health journey shaped her approach to medicine and inspired her to help patients develop a healthier relationship with their bodies.

She explains why people living with Lyme disease, fibromyalgia, POTS, migraines, post-COVID conditions, and other complex illnesses may benefit from addressing nervous system regulation alongside appropriate medical care.

Rich and Dr. Goddard also discuss the sympathetic and parasympathetic nervous systems, the influence of chronic stress, the importance of emotional and physical connection, and why no two patients should be expected to follow identical healing journeys.

Throughout the conversation, Dr. Goddard emphasizes a message of hope:

Even when an illness is complicated and answers are difficult to find, there may still be meaningful ways to support healing and improve quality of life.

Meet Dr. Jacey Goddard, DO

Dr. Jacey E. Goddard, DO is a triple board-certified osteopathic physician practicing in Topsham, Maine.

Her medical training includes board certification in:

• Family Medicine
• Integrative Medicine
• Neuromusculoskeletal Medicine and Osteopathic Manipulative Medicine

Dr. Goddard practices at RiverTree Osteopathic Health, where she focuses on hands-on osteopathic treatment and individualized approaches to complex health conditions.

Her patients include people experiencing:

• Lyme disease and other tick-borne illnesses
• Fibromyalgia
• Chronic migraines
• Persistent pain
• Postural orthostatic tachycardia syndrome (POTS)
• Post-COVID symptoms
• Other difficult-to-treat conditions

Dr. Goddard combines her medical training with an interest in the relationship between physical health, emotional well-being, and nervous system function.

She is also the creator of The Art & Science of Healing from Within, an educational program focused on reconnecting with the body and developing practical mind-body awareness skills.

When Even a Doctor Is Told There's Nothing More to Do

Dr. Goddard begins by sharing that her interest in complex chronic illness is deeply personal.

She has experienced her own prolonged health challenges and understands the frustration of seeking answers when medical professionals cannot explain what is happening.

Despite being a physician herself, she encountered responses suggesting that her symptoms were psychological or that nothing more could be done.

Those experiences influenced how she now approaches patients.

She recognizes that people living with chronic illness may already have spent years searching for explanations, undergoing treatments, and trying to regain their health.

Being told there are no additional options can be especially discouraging.

Dr. Goddard believes clinicians should remain curious, compassionate, and open to helping patients improve their well-being, even when a condition is not fully understood.

Her experience reinforces an important message for the Lyme disease community: A patient deserves to be heard and supported even when the answers are incomplete.

Lyme Disease in Maine: Borrelia, Bartonella, and Babesia

Rich asks Dr. Goddard about the prevalence of tick-borne diseases in Maine.

She describes tick exposure as a significant concern and recalls particularly high tick activity during the preceding spring.

Their conversation turns to three pathogen groups frequently discussed in the Lyme disease community:

Borrelia: Bacteria associated with Lyme disease and certain relapsing fever illnesses.

Bartonella: Bacteria responsible for several different infectious diseases, including cat-scratch disease.

Babesia: Tick-borne parasites that infect red blood cells and can cause babesiosis.

Rich explains that Tick Boot Camp has interviewed an increasing number of patients who report diagnoses involving multiple infections.

He asks whether this reflects changes in tick populations, greater awareness, better diagnostic testing, or improvements in clinical recognition.

Dr. Goddard believes several factors may contribute.

She also emphasizes that patients often experience multiple overlapping health challenges.

Although co-infections can occur, not every person with Lyme disease has Bartonella or Babesia, and the frequency of co-infections varies by region and exposure history.

What Is Terrain Theory, and How Does It Relate to Lyme Disease?

One of the central themes of the interview is Dr. Goddard's interest in what she calls terrain theory.

She uses the term to describe the factors that may influence a person's vulnerability to illness and capacity to recover.

Rather than focusing exclusively on an infectious organism, she encourages patients and clinicians to consider the broader conditions affecting health.

These may include:

• Sleep and recovery
• Chronic stress
• Nervous system regulation
• Environmental exposures
• Nutrition and general health
• Previous trauma
• Existing medical conditions
• Individual physiological differences

Dr. Goddard explains that some patients report becoming more symptomatic during periods of significant physical or emotional stress.

She believes that understanding these patterns can help patients identify areas where additional support may be beneficial.

This perspective does not mean that stress causes Lyme disease or that improving lifestyle factors can eliminate an established infection.

Lyme disease is caused by infection with Borrelia bacteria. Supportive care may complement appropriate diagnosis and treatment but does not replace it.

Understanding Threat, Vulnerability, and Chronic Illness

Rich introduces an analogy from retired U.S. General Stanley McChrystal's book Risk.

He describes risk as the interaction between a threat and a person's vulnerability.

Applied to tick-borne illness, the threat might involve exposure to an infected tick.

Vulnerability could involve individual health circumstances or other factors influencing the body's response.

Rich connects this framework to Dr. Goddard's discussion of terrain.

They explore how environmental changes, expanding tick activity, and wildlife populations may influence opportunities for exposure.

Dr. Goddard then shifts the conversation toward the aspects of health that people may be able to support in their everyday lives.

Her goal is to help patients recognize that while they cannot control every exposure or medical outcome, they may still have opportunities to improve their comfort, coping skills, and overall well-being.

Nervous System Dysregulation and Chronic Lyme Disease

Dr. Goddard discusses how chronic illness can affect a person's relationship with their body.

People experiencing persistent symptoms may become highly attentive to pain, fatigue, dizziness, or other physical sensations.

Over time, illness-related stress can contribute to patterns of heightened vigilance and difficulty relaxing.

Rich introduces the sympathetic and parasympathetic branches of the autonomic nervous system.

The sympathetic nervous system helps coordinate responses to stress and perceived threats.

The parasympathetic nervous system supports functions such as digestion, recovery, and aspects of rest.

Both systems are essential, and healthy regulation involves flexibility rather than remaining permanently in one state.

Dr. Goddard believes learning to recognize and respond to nervous system patterns can help some patients manage symptoms and improve their daily functioning.

However, nervous system dysregulation is not an established explanation for every symptom of Lyme disease, and nervous system exercises cannot substitute for treating an active infection.

Are We Becoming Disconnected From Our Bodies?

Dr. Goddard argues that modern life often encourages people to remain constantly busy and focused on external expectations.

Work, technology, social obligations, and everyday responsibilities can make it difficult to recognize physical and emotional needs.

She describes how people may become disconnected from their own internal experiences.

Rather than noticing fatigue and responding with appropriate rest, someone may continue pushing through demanding schedules.

Rather than recognizing stress, they may become accustomed to living in a heightened state of tension.

Dr. Goddard believes reconnecting with the body begins with developing awareness of these patterns.

She encourages people to approach their bodies with curiosity and compassion instead of frustration or fear.

Her message is not that patients have created their illnesses through their behavior.

Instead, she believes that learning to respond more supportively to the body may be valuable during recovery.

Your Body Is Not Your Enemy

One of Dr. Goddard's most memorable messages is that the body should be treated as an ally rather than an enemy.

She recognizes that people living with chronic pain or unpredictable symptoms can develop a difficult relationship with their bodies.

When symptoms repeatedly interfere with daily life, it is understandable to feel frustrated, frightened, or discouraged.

Dr. Goddard encourages a different approach.

Instead of interpreting every sensation as a battle against the body, she suggests asking what support might be helpful in that moment.

That might involve rest, medical attention, adjusting an activity, practicing a calming exercise, or recognizing a physical limitation.

She believes that developing a more compassionate relationship with the body can help reduce some of the emotional distress associated with chronic illness.

This approach does not require patients to ignore symptoms or assume that positive thinking will resolve a medical condition.

Mind-Body-Spirit Healing: Treating the Whole Person

Rich and Dr. Goddard explore the relationship between physical, emotional, mental, and spiritual well-being.

Rich questions whether dividing human experience into separate categories sometimes prevents people from understanding how closely these aspects of life interact.

Dr. Goddard agrees that health involves interconnected processes.

She emphasizes that thoughts, emotions, physical sensations, and nervous system activity influence one another.

For example, persistent pain can affect mood and sleep.

Poor sleep may worsen pain sensitivity or emotional distress.

Stress can influence breathing patterns, muscle tension, and other physiological responses.

These relationships are real, but they do not mean that every physical symptom originates in thoughts or emotions.

Dr. Goddard's broader message is that comprehensive care should recognize the whole person.

Mindfulness or Bodyfulness? Learning to Be Present

Dr. Goddard introduces an interesting alternative to conventional discussions of mindfulness.

She suggests that some people might benefit from thinking about bodyfulness.

Rather than focusing exclusively on thoughts, her approach encourages awareness of physical sensations and the experience of being present in the body.

She describes simple practices such as:

• Pausing briefly during the day
• Noticing physical sensations without immediately judging them
• Becoming aware of breathing
• Recognizing signs of tension or fatigue
• Allowing moments of physical comfort
• Responding to personal needs with patience

Dr. Goddard emphasizes that these practices do not require elaborate equipment or lengthy meditation sessions.

She believes small moments of awareness, repeated throughout daily life, can help people develop more supportive habits.

For patients with trauma histories or conditions that make body awareness uncomfortable, these practices may need to be adapted with professional guidance.

Neuroplasticity: Can We Change Our Patterns?

Rich and Dr. Goddard discuss the concept of neuroplasticity, the nervous system's capacity to change through experience and learning.

Dr. Goddard believes that repeated patterns of attention, behavior, and emotional response can influence how people experience and respond to their bodies.

She describes working with patients who have experienced panic attacks, palpitations, chronic pain, and post-traumatic stress symptoms.

According to Dr. Goddard, some patients have reported improvements after learning mind-body awareness techniques.

These are her clinical observations rather than controlled evidence that the techniques treat the underlying causes of those conditions.

Neuroplasticity is a well-established biological phenomenon, but specific brain-retraining or mind-body programs vary in their supporting evidence.

For additional perspectives, explore Tick Boot Camp's interview with Ben Ahrens about neuroplasticity.

Why Healing Is Not One-Size-Fits-All

Rich raises concerns about patients adopting identical treatment protocols simply because someone else reported success.

He describes how groups of patients sometimes begin using the same supplements or treatment approaches together.

While community support can be valuable, Rich emphasizes that people may have very different diagnoses, symptoms, medical histories, and treatment needs.

Dr. Goddard agrees.

She believes individualized care is essential because no two people have identical experiences.

An intervention that helps one person may not be appropriate for another.

This applies to medications, supplements, rehabilitation, and mind-body practices.

Their discussion encourages patients to seek personalized medical guidance rather than assuming that a treatment will work because it helped someone else.

Medical Trauma and Feeling Dismissed by Healthcare Professionals

Rich returns to Dr. Goddard's personal experience of seeking medical help.

He notes that even physicians can encounter dismissive responses when they experience poorly understood symptoms.

Dr. Goddard acknowledges how painful and frustrating those experiences can be.

They discuss the term medical gaslighting, including whether every dismissive encounter involves deliberate manipulation or whether some clinicians simply lack sufficient knowledge.

Dr. Goddard believes intent and understanding matter when evaluating these interactions.

At the same time, she recognizes that patients may experience real emotional harm regardless of a clinician's intentions.

The conversation emphasizes the importance of validating patient experiences without allowing painful encounters to define every future healthcare interaction.

Patients deserve respectful communication, appropriate investigation, and honest discussions about uncertainty.

Trauma, Stress, and the Healing Process

Dr. Goddard explains that prolonged illness can itself be traumatic.

People may experience fear, isolation, financial strain, repeated medical appointments, and uncertainty about their future.

Some also have previous traumatic experiences that influence how they respond to stress.

She believes helping patients develop greater emotional and physical awareness may support their ability to cope with these challenges.

Rich discusses how learning about nervous system responses changed his own understanding of health and personal development.

Together, they explore the importance of recognizing patterns without judging oneself for having them.

Trauma-informed care can be an important part of supporting people with chronic illness, but trauma is not a prerequisite for developing Lyme disease, and resolving trauma is not a cure for infection.

The Art & Science of Healing from Within

Dr. Goddard discusses the development of her educational course, The Art & Science of Healing from Within.

She explains that the program originally had a different title: The Art and Science of Being Human.

Her goal was to teach skills she wishes she had learned earlier in life.

These include reconnecting with the body, recognizing habitual patterns, and practicing self-awareness throughout ordinary daily activities.

She ultimately changed the title to emphasize healing and make the purpose of the course clearer.

Dr. Goddard believes that meaningful change does not always require expensive devices, complicated routines, or spending hours meditating.

Instead, she encourages people to practice brief moments of connection with themselves throughout the day.

The course reflects her educational philosophy and personal clinical experience. Its effectiveness as a treatment for Lyme disease has not been established through clinical trials.

How Osteopathic Medicine Fits Into Her Approach

As an osteopathic physician, Dr. Goddard emphasizes the relationship between the body's structure and function.

Her primary clinical focus is osteopathic manipulative treatment, a hands-on approach used by some physicians to evaluate and address musculoskeletal dysfunction.

She integrates this work with her interest in whole-person care.

Patients may seek osteopathic treatment for concerns involving pain, movement, or physical discomfort.

The effectiveness of osteopathic manipulative treatment varies by condition, and it should not be considered a substitute for antimicrobial treatment when an active bacterial infection requires it.

Dr. Goddard's approach reflects her belief that patients may benefit from attention to both their diagnosed medical conditions and their overall functioning.

How to Work With Dr. Jacey Goddard

Dr. Goddard practices at RiverTree Osteopathic Health in Topsham, Maine.

Her work focuses on osteopathic manipulative treatment, integrative medicine, and supporting patients with complex health challenges.

For more information about her medical background and philosophy, visit her official physician biography.

Patients and healthcare professionals interested in her educational approach to nervous system regulation and mind-body awareness can also explore The Art & Science of Healing from Within.

Key Takeaways

• Healing from chronic illness can involve multiple dimensions of health. Dr. Goddard emphasizes physical, emotional, and nervous system support alongside appropriate medical care.
• Dr. Goddard understands medical uncertainty firsthand. Her personal healing journey shaped her compassionate approach to patients with difficult-to-treat conditions.
• Lyme disease is a significant concern in Maine. Rich and Dr. Goddard discuss Borrelia, Bartonella, Babesia, and changing patterns of tick exposure.
• Individual vulnerability is complex. Sleep, stress, medical history, environmental exposures, and other factors can influence overall health.
• Nervous system regulation may support symptom management. Learning about autonomic responses can help some people better understand their experiences.
• The body deserves compassion. Dr. Goddard encourages patients to develop a more supportive relationship with their physical sensations and needs.
• Mind-body practices do not need to be complicated. Brief moments of awareness may be more practical than elaborate daily routines.
• Neuroplasticity offers opportunities for learning and adaptation. However, specific brain-retraining programs should not be assumed to cure infectious diseases.
• Medical trauma deserves recognition. Patients can experience emotional harm when symptoms are dismissed or poorly understood.
• Individualized treatment matters. No single supplement, protocol, or nervous system technique is appropriate for every patient.
• Healing is possible, but no method guarantees recovery. Dr. Goddard encourages hope, curiosity, and compassionate self-care.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Jacey Goddard, DO, a triple board-certified osteopathic physician practicing in Topsham, Maine.

Rich and Dr. Goddard explore the relationship between chronic Lyme disease, nervous system regulation, mind-body healing, medical trauma, neuroplasticity, and individualized healthcare.

Their discussion challenges patients and practitioners to consider how physical health, emotional experiences, and nervous system function interact—while recognizing the importance of appropriate medical diagnosis and treatment.

Discover more interviews with physicians, researchers, and patient advocates through Tick Boot Camp's LIVE from ILADS podcast series.

Read transcript

What actually happens when a tick bites you—and how can something so small manipulate the human immune system long enough to feed and potentially transmit disease?

Tick-borne disease researcher Monica Cipriani joins Rich Johannesen, co-founder of Tick Boot Camp Podcast, for an in-depth exploration of the biology of the tick bite, Lyme disease, alpha-gal syndrome, tick saliva, immune modulation, and tick-borne disease transmission.

This conversation was recorded in person at the Tick Boot Camp studio immediately after Monica led our team on a tick-dragging field day across Long Island, where we collected hundreds of ticks from a farm, public trail, and residential environment—including clusters of nearly invisible lone star tick larvae known as “tick bombs,” blacklegged ticks, and an invasive Asian longhorned tick.

See what we found while dragging for ticks on Long Island.

From Lyme Disease Caregiver to Tick-Borne Disease Researcher

Monica's work is deeply personal.

With bachelor's and master's training in microbiology, she transitioned into epidemiology to focus on research, public health, education, advocacy, and policy surrounding tick-borne diseases.

Her mother endured years of unexplained symptoms—including hives, joint pain, brain fog, and cognitive changes—before eventually receiving a Lyme disease diagnosis. Years later, Monica watched her young daughter develop concerning neurological, behavioral, sleep, and physical symptoms while living in Kentucky. After numerous medical appointments, her family traveled to New York, where her daughter was diagnosed with Lyme disease.

Those experiences helped shape Monica's determination to study why tick-borne diseases can be missed, misclassified, and misunderstood—and how research can help patients receive answers sooner.

How Does a Tick Find and Bite a Human?

Monica takes listeners inside the remarkable biology of ticks.

Ticks are arachnids, not insects, and different species can act as vectors for different pathogens. The episode explores three important species:

• Blacklegged tick ( Ixodes scapularis ) — associated with Lyme disease and other tick-borne infections
• Lone star tick ( Amblyomma americanum ) — strongly associated with alpha-gal syndrome and capable of transmitting several pathogens
• American dog tick ( Dermacentor variabilis ) — another common human-biting tick

Using a specialized sensory structure called the Haller's organ, ticks can detect environmental signals associated with potential hosts.

Some ticks wait for a host to pass close enough to grab onto, while lone star ticks can be particularly aggressive in seeking hosts.

Once aboard, ticks crawl toward locations where they can establish a successful blood meal.

Tick Saliva: An Evolutionary Tool for Feeding

One of the most fascinating parts of the conversation focuses on tick saliva.

A tick needs to remain attached long enough to complete its blood meal, but the human body has numerous defenses designed to detect an injury or foreign organism.

Monica explains how components of tick saliva can interfere with those defenses.

The discussion explores how ticks can:

• Reduce pain at the bite site
• Suppress itching and histamine-related responses
• Interfere with blood clotting
• Affect blood vessels and platelet activity
• Modulate local immune responses
• Anchor themselves using specialized mouthparts and cement-like substances
• Alter salivary molecules throughout the feeding process

Rather than simply suppressing the immune system completely, Monica describes how ticks can modulate the local immune environment in ways that help preserve viable tissue and allow feeding to continue.

That means a tick bite isn't simply a tiny wound through which a pathogen enters. The tick itself may help create the biological environment in which transmission occurs.

Why Tick-Borne Disease Is About More Than Lyme

Ticks may acquire microorganisms during earlier blood meals from wildlife and subsequently expose another host during feeding.

The conversation examines the ecological relationship among ticks, wildlife, pathogens, and humans and why understanding the vector is critical to understanding tick-borne illness.

Monica and Rich discuss Lyme disease and Borrelia, along with other tick-associated threats including:

• Ehrlichiosis
• STARI
• Powassan virus
• Bourbon virus
• Heartland virus
• Alpha-gal syndrome

The discussion also explores why the length of attachment matters while emphasizing an important point: people frequently do not know exactly when a tick attached.

Larval and nymphal ticks can be extraordinarily difficult to see. During Tick Boot Camp's Long Island field work, the team collected larvae so small that hundreds looked almost like specks of pepper.

Learn more about ticks and tick-borne disease in this University of Kentucky resource co-authored by Monica.

Alpha-Gal Syndrome and the Lone Star Tick

A major focus of Monica's current research is alpha-gal syndrome (AGS), sometimes called the red meat allergy.

Alpha-gal syndrome is associated with tick bites—particularly bites from the lone star tick in the United States—and can cause an immune reaction to alpha-gal, a sugar found in most non-primate mammals and mammal-derived products.

For some people, reactions may be relatively mild. For others, exposure can potentially result in severe allergic reactions, including anaphylaxis.

But one of the biggest scientific questions remains:

Why can two people be bitten by similar ticks and have completely different outcomes?

Monica discusses the unanswered questions surrounding individual immune responses, sensitization, demographics, environmental exposures, and the unusual way a tick bite introduces alpha-gal alongside a complex mixture of salivary molecules.

Her research aims to better understand those patterns and the patient experience surrounding this emerging condition.

Learn more about Monica Cipriani's epidemiology and alpha-gal research.

Lyme Disease, Research, and the Questions Patients Are Asking

The episode also tackles difficult questions that remain important to the Lyme community, including the possibility of congenital transmission of Lyme disease.

Monica explains why researchers must remain willing to investigate unanswered questions rather than dismiss possibilities before adequate research exists.

As both a scientist and a mother whose family has been affected by Lyme disease, she brings a rare perspective to the conversation: understanding the scientific process while also understanding what it feels like when a patient or parent believes something important is being missed.

Why Better Tick Research Matters

Monica argues that improving Lyme and tick-borne disease care requires stronger communication among researchers, public health professionals, clinicians, and patients.

Research ultimately helps create the evidence clinicians can use to recognize disease, improve diagnosis, develop treatments, and establish better standards of care.

For Monica, that work comes back to one goal: helping people feel heard while asking the scientific questions that could lead to better answers.

From the Field to the Tick Boot Camp Studio

This interview capped an extraordinary day of hands-on tick research on Long Island.

Monica, her husband Dr. Andre Ene, Tick Boot Camp co-founders Matt Sabatello and Rich Johannesen, filmmaker Reece Robinson, and the production team dragged for ticks at Malik Farms in Coram, the Rails to Trails path in Rocky Point, and a residential property and nearby groundwater recharge basin.

The team encountered hundreds of lone star tick larvae, blacklegged ticks, multiple “tick bombs,” and an invasive Asian longhorned tick identified by Monica.

The experience made the subject of this interview tangible: ticks capable of affecting human and animal health aren't only deep in the woods. They can be present where people live, work, walk, farm, exercise, and spend time with their families.

Explore the Long Island tick-dragging field day, photos, videos, species, and findings.

Tick Boot Camp Resourceshttps://www.kyerc.com/studentshttps://tickbootcamp.com/long-island-tick-drag-tick-bombs-invasive-tick/

• Tick Boot Camp Tick Bite Blueprint
• Lyme Disease Testing
• More Tick-Borne Disease Researcher Interviews

What happens when someone living with chronic Lyme disease uses their own experience to tackle one of the biggest challenges facing the Lyme community: a lack of public awareness, understanding, and compassion?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Eva Scarano, founder of LymeLnk, to discuss her personal Lyme disease journey, the creation of a patient-centered advocacy organization, and her mission to make Lyme disease education accessible to the general public.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores how Eva transformed her experiences with Lyme disease into a nonprofit organization focused on storytelling, community engagement, tick prevention, early detection, and public education.

Eva shares how she was diagnosed with Lyme disease in 2016 after developing a bull's-eye rash and flu-like symptoms, how her health deteriorated following a period of improvement, and how reaching her lowest point during graduate school inspired her to rethink her relationship with chronic illness.

Through her graduate studies at Parsons School of Design, Eva began researching the Lyme disease community and interviewing patients, advocates, and organizations to better understand where education and awareness efforts could have the greatest impact.

That research ultimately led to the creation of LymeLnk, an organization working to make basic Lyme disease knowledge as familiar to the public as other common health and safety information.

Rich and Eva discuss Lyme disease stigma, the importance of patient stories, community-centered design, tick-borne disease awareness in California, the role of climate and environmental changes, and innovative approaches to educating children and families.

Meet Eva Scarano: Founder of LymeLnk

Eva Scarano is the founder of LymeLnk, a community-focused Lyme disease education and awareness organization developed through her graduate studies at Parsons School of Design in New York City.

Before launching LymeLnk, Eva spent approximately six years working in corporate technology, including sales and product marketing.

She later pursued graduate studies in strategic design and management, a discipline that applies human-centered design principles to complex organizational and social challenges.

Eva's own experiences with Lyme disease inspired her to apply these methods to public health education and community advocacy.

Rather than building another organization focused primarily on research funding, clinical education, or legislative advocacy, she identified an opportunity to reach people who know very little about Lyme disease.

Her goal is straightforward: Help the general public understand the basics of Lyme disease so more people can recognize risks, take preventive action, and respond compassionately to those living with the illness.

A Textbook Lyme Disease Diagnosis in 2016

Eva's Lyme disease story begins in 2016 during her senior year of college in Ann Arbor, Michigan.

She developed symptoms commonly associated with early Lyme disease, including:

• A bull's-eye rash
• Flu-like symptoms
• Significant fatigue
• Cognitive difficulties

Eva visited an urgent care facility, where her symptoms were recognized and she received a Lyme disease diagnosis.

She subsequently worked with a practitioner experienced in treating Lyme disease.

Eva describes undergoing approximately three months of treatment involving antibiotics and herbal therapies.

The experience was difficult.

She recalls waking up to take an economics final exam and realizing she could not read the material.

With assistance from her university's disability services, she was able to complete her academic responsibilities.

Following treatment, Eva experienced approximately two years of significant improvement.

At the time, she believed the worst of her Lyme disease journey might be behind her.

When Symptoms Returned After Moving to San Francisco

In 2019, Eva moved into an apartment in San Francisco that she describes as having significant mold problems.

She associates that environmental exposure with a deterioration in her health.

After experiencing a period of relative stability, she began struggling with recurring symptoms and increasing health challenges.

Eva describes the following years as an unpredictable cycle of improvements and setbacks.

She continued working, traveling, and maintaining an active lifestyle while simultaneously managing her health.

Although Eva believes the mold exposure contributed to her decline, the interview does not establish a medical cause-and-effect relationship between the apartment and her subsequent symptoms.

Her experience reflects the difficulty many patients face when trying to understand which factors may be contributing to a complex illness.

Reaching Her Lowest Point During Graduate School

By 2023, Eva was attending graduate school at Parsons School of Design in New York City.

She was also teaching Pilates part-time, traveling for friends' weddings, and trying to maintain the active lifestyle she had enjoyed before becoming ill.

At the same time, she was managing multiple health conditions and ongoing symptoms.

Eva describes herself as someone who naturally enjoys staying busy.

Slowing down did not come easily.

Eventually, her health deteriorated to the point that she could no longer continue at the same pace.

She describes 2023 as the sickest period of her life.

During the interview, Eva discusses several possible contributing factors, including travel, demanding schedules, immune-related health concerns, and receiving influenza and COVID-19 vaccinations on the same day.

She explicitly acknowledges that she cannot identify a single cause of her decline.

Her experience does not establish that vaccination caused her symptoms or that receiving both vaccines together is generally unsafe. Receiving recommended influenza and COVID-19 vaccines during the same visit is considered acceptable for most eligible people, with individual medical circumstances discussed with a healthcare professional.

Eva's broader point is that complex illnesses can make it difficult to determine why symptoms worsen or improve.

Turning Pain Into Purpose Through Parsons School of Design

During her most difficult period, Eva began applying her graduate coursework to the challenges facing the Lyme disease community.

Her academic program focused on strategic design and management, including human-centered problem-solving and community research.

Rather than abandoning graduate school, she used her education to investigate how Lyme disease awareness could be improved.

Eva and her collaborators interviewed more than 100 people connected to the Lyme disease community.

These conversations helped identify common frustrations involving diagnosis, treatment, education, public awareness, and social support.

Eva concluded that many organizations were already doing valuable work in specialized areas.

However, she believed an important opportunity remained: reaching people who had never experienced Lyme disease and knew little about it.

This realization became the foundation for LymeLnk.

Why Eva Founded LymeLnk

Eva explains that the Lyme disease community includes numerous organizations addressing different parts of a complicated healthcare and public health landscape.

She highlights organizations such as:

• ILADS, which provides education and professional development for healthcare practitioners
• Center for Lyme Action, which focuses on legislative advocacy and public policy
• Global Lyme Alliance, which supports research and education
• Bay Area Lyme Foundation, which funds scientific research and advances awareness

Eva believes these organizations provide important specialized services.

Rather than duplicating their work, she wanted LymeLnk to complement it.

Her organization focuses on expanding basic Lyme disease knowledge among people outside the established patient community.

She argues that public education can help create a stronger foundation for prevention, earlier recognition, and greater compassion.

The ABCs of Lyme Disease Awareness

Eva describes LymeLnk's educational mission as helping people understand the ABCs of Lyme disease.

These include basic knowledge about:

Prevention: Understanding where ticks live, how exposure occurs, and how to reduce the risk of tick bites.

Early detection: Recognizing potential signs and symptoms and knowing when to seek medical evaluation.

Diagnosis: Understanding that Lyme disease testing has limitations and that clinical history matters.

Treatment: Knowing that early evaluation and appropriate treatment are important.

Eva believes people should not have to become seriously ill before learning these fundamentals.

She wants Lyme disease awareness to become part of everyday health education.

For practical prevention guidance, explore Tick Boot Camp's Tick Bite Blueprint.

Why Patient Compassion Matters as Much as Awareness

One of the most powerful moments in the interview comes when Eva describes feedback from Lyme disease patients participating in her research.

Her team asked what successful public education would look like.

Many patients did not begin by asking for complicated policy changes or scientific breakthroughs.

They wanted something much simpler.

They wanted to be able to tell someone they had Lyme disease and receive a response demonstrating basic understanding and compassion.

Eva explains that patients often feel isolated because people around them do not understand the illness.

This lack of understanding can make it harder to discuss symptoms, ask for accommodations, or feel supported.

She believes that improving public literacy could help reduce stigma and strengthen community support.

People living with Lyme disease deserve to be heard, believed, and treated with compassion.

Storytelling as a Public Health Education Strategy

Eva believes storytelling is one of the most effective ways to reach people who are unfamiliar with Lyme disease.

Statistics and medical information are important, but personal experiences can make an unfamiliar issue feel relevant.

Her approach combines patient stories with educational campaigns tailored to specific communities.

Rather than delivering identical messages to everyone, LymeLnk aims to understand what different groups need to know.

Potential audiences include:

• Parents seeking to protect their children
• Pet owners concerned about tick exposure
• Outdoor enthusiasts and recreational groups
• People working outdoors
• Communities affected by changing tick habitats
• Environmental and public health advocates

Eva believes educational programs become more effective when they are developed with the people they are intended to serve.

What Is Community-Centered Design?

Eva introduces the concept of co-design, a method of developing programs collaboratively with the people who will use them.

Instead of creating a campaign and asking a community to accept it, LymeLnk begins by learning about the community's experiences, concerns, and existing knowledge.

The organization then works with local partners to create appropriate educational materials.

Depending on the audience, these may include:

• Public service announcements
• Social media campaigns
• Community workshops
• Hands-on tick prevention demonstrations
• Educational programs for children
• Outdoor safety events
• Storytelling initiatives featuring patient experiences

Eva explains that the organization intends to test these approaches, measure their effectiveness, and improve them before expanding.

Her goal is to develop a model that can be adapted across different communities.

Why LymeLnk Launched in San Diego

Although Eva developed the concept while attending Parsons in New York City, LymeLnk was incorporated in California.

Eva explains that the organization established a presence in both San Diego and New York.

These locations offer contrasting opportunities for Lyme disease education.

New York has a long history of public awareness because Lyme disease is well established in the Northeast.

San Diego, by comparison, offers opportunities to educate communities that may be less familiar with local tick-borne disease risks.

Eva also grew up in California and had personal connections that could help support the organization's launch.

She believes Southern California is an important place to address misconceptions about where tick-borne diseases occur.

Lyme Disease and Tick Exposure in Southern California

Eva challenges the misconception that Lyme disease and other tick-borne illnesses are exclusively East Coast problems.

She explains that California has its own tick populations and documented tick-borne disease risks.

People who spend time outdoors, travel to other regions, or interact with pets may encounter ticks.

Eva believes a lack of awareness can contribute to missed opportunities for prevention and appropriate medical evaluation.

Her organization aims to educate Southern California communities without creating unnecessary fear.

The message is not that every tick carries Lyme disease.

It is that people should understand their local risks and know how to protect themselves.

The San Diego Launch Event: Bringing the Community Together

Eva describes LymeLnk's launch event in San Diego's Little Italy neighborhood.

Approximately 150 people attended.

The event combined social connection with education and featured food options designed to accommodate different dietary needs.

Eva shared her personal Lyme disease journey and explained the mission behind LymeLnk.

The event also featured a discussion with:

Dr. Liz Horn, principal investigator of the Lyme Disease Biobank, and Dr. Sharon Wampler of the San Diego Lyme Alliance.

Together, they addressed misconceptions about tick-borne disease in California.

Eva describes the event as an opportunity to connect patients, advocates, researchers, and community members in a welcoming environment.

A Tick Encounter at a La Jolla Coffee Shop

Eva shares a memorable story from the days leading up to LymeLnk's launch.

While working at a coffee shop in La Jolla, she overheard someone discussing a tick found on her body.

The woman explained that she had begun finding ticks regularly after walking her German Shepherd.

She mentioned areas around San Diego, including Nautilus Street and Kate Sessions Park.

Having lived in the area for many years, the woman was surprised by what she perceived as an increase in tick encounters.

Eva introduced herself and explained her work with LymeLnk.

The conversation became an unexpected opportunity for public education.

Eva describes the encounter as a perfect example of why her organization exists.

People may encounter ticks in places they do not associate with Lyme disease.

A simple conversation can help someone recognize a risk and learn how to respond.

Climate Change, Habitat Changes, and Tick Populations

Eva and Rich discuss environmental factors that may influence tick distribution.

Eva raises concerns about climate change, habitat fragmentation, and changing conditions that affect tick survival and activity.

Scientific research has identified relationships between climate, habitat, wildlife populations, and the distribution of certain tick species.

However, local changes in tick encounters can have multiple causes, and an individual observation cannot establish why a particular area has more ticks.

Eva believes environmental education and Lyme disease awareness should increasingly work together.

Her approach encourages communities to understand how human activity and ecological conditions influence public health.

Measuring Whether Lyme Disease Education Works

Eva explains that LymeLnk wants to measure the effectiveness of its educational programs rather than simply count event attendance.

Following the San Diego launch, the organization surveyed participants.

Eva reports a 76% increase in an education-related measure among attendees.

The interview does not specify the survey methodology or how that percentage was calculated.

Nevertheless, Eva sees the early feedback as encouraging.

She believes that gathering information before and after educational programs can help identify which approaches are most effective.

This emphasis on measurement reflects her background in strategic design.

Bringing Tick Prevention Education Into Schools

One of LymeLnk's first proposed initiatives involves partnering with an organization that provides after-school STEM programming to children in San Diego.

Eva explains that the project was still in development at the time of the interview.

The goal is to incorporate tick-borne disease education into existing science and outdoor learning programs.

Potential topics include:

• Tick biology and ecology
• Wildlife and tick habitats
• Outdoor safety
• Tick checks and prevention
• Understanding how infectious diseases spread
• Recognizing when to seek help after a tick bite

Eva believes teaching children about ticks through familiar science concepts can make prevention education engaging and practical.

Rather than creating an entirely new curriculum, LymeLnk hopes to collaborate with established organizations and adapt existing educational resources.

Scaling Lyme Disease Education One Community at a Time

Eva explains that LymeLnk intends to begin with smaller educational programs and gradually expand.

The initial focus is San Diego.

The organization hopes to develop programs with local partners, evaluate the results, and refine its approach.

If the early programs are successful, Eva envisions expanding to additional schools, outdoor organizations, and community groups.

She mentions potential opportunities to engage outdoor enthusiasts and organizations such as the Sierra Club and REI communities.

Her long-term goal is to increase Lyme disease literacy throughout San Diego County and eventually adapt the model for other regions.

Why Collaboration Is Essential

Eva emphasizes that LymeLnk does not want to reinvent educational resources that other organizations have already developed.

Instead, she hopes to collaborate with researchers, advocacy groups, and community organizations.

These partners may provide existing educational materials, scientific expertise, and local knowledge.

LymeLnk can then help adapt that information for audiences who may otherwise never encounter it.

This approach recognizes that effective advocacy requires different organizations to contribute their unique strengths.

For more conversations with researchers, advocates, and community leaders, explore the Tick Boot Camp Podcast.

Key Takeaways

• Eva Scarano was diagnosed with Lyme disease in 2016. Her symptoms included a bull's-eye rash and flu-like illness while attending college in Michigan.
• Her health challenges continued after initial improvement. Eva describes renewed symptoms beginning in 2019 and a particularly difficult period in 2023.
• Graduate school became a turning point. She applied strategic design principles to the challenges facing the Lyme disease community.
• LymeLnk grew from community research. Eva and her collaborators interviewed more than 100 people to understand unmet educational needs.
• Public awareness is the organization's primary focus. LymeLnk aims to help people understand prevention, early detection, diagnosis, and treatment basics.
• Patient compassion is central to the mission. Eva believes greater public understanding can reduce stigma and isolation.
• Storytelling is a powerful educational tool. Personal experiences can help make Lyme disease information more relatable.
• San Diego became the organization's launch location. Approximately 150 people attended the inaugural event.
• Community partnerships will drive future programs. LymeLnk hopes to develop educational campaigns collaboratively with schools and other organizations.
• The long-term goal is scalable Lyme disease literacy. Eva envisions expanding successful educational models from one community to another.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Eva Scarano, founder of LymeLnk, discussing her personal Lyme disease journey and her mission to transform public understanding of tick-borne illness.

Rich and Eva explore the power of storytelling, patient compassion, community-centered design, Lyme disease education in California, and the importance of reaching people before they become patients.

The conversation highlights how lived experience, creativity, and collaboration can help strengthen Lyme disease advocacy.

Discover additional conversations with patient advocates, researchers, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

Could some people diagnosed with long COVID also be dealing with Lyme disease, Bartonella, Babesia, or other infections that have gone undetected?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Ben Sinclair, founder of Dr. Finlay's Private Practice in the United Kingdom, to explore the complex relationship between long COVID, Lyme disease, tick-borne infections, immune health, and chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation examines how Dr. Sinclair's own debilitating illness following COVID-19 transformed his medical career and led him to investigate Lyme disease and associated infections.

After becoming severely ill with COVID-19 while working as a medical director within the UK's National Health Service (NHS), Dr. Sinclair spent approximately three months largely confined to bed. His symptoms included profound fatigue, neurological difficulties, and a remarkable period during which he struggled to speak English but could communicate in German.

Initially believing he was experiencing long COVID, he later pursued testing for Lyme disease, Bartonella, and other infections.

His personal experience inspired a broader clinical focus on patients with persistent fatigue, neurological symptoms, and complex post-infectious illnesses.

Rich and Dr. Sinclair discuss the three Bs—Borrelia, Bartonella, and Babesia—along with tick exposure in the UK, climate change, deer populations, neurological symptoms, nervous system regulation, nutrition, and the challenges of accessing Lyme disease care through the NHS.

Throughout the conversation, Dr. Sinclair emphasizes the importance of looking at the whole patient rather than focusing exclusively on a single diagnosis.

Meet Dr. Ben Sinclair: Founder of Dr. Finlay's Private Practice

Dr. Ben Sinclair is a UK physician and founder of Dr. Finlay's Private Practice, a multidisciplinary private healthcare practice serving patients with complex chronic illnesses, including long COVID and suspected tick-borne infections.

The practice operates primarily from London, near Oxford Street, with additional clinical services in Birmingham and other parts of the United Kingdom.

Dr. Sinclair previously worked within the NHS, including serving as a regional medical director overseeing healthcare services across approximately 14 prisons.

Alongside his NHS responsibilities, he developed an interest in preventive medicine, nutrition, health optimization, and integrative approaches to chronic illness.

His practice now brings together healthcare professionals from several disciplines, including:

• Physicians with interests in functional and integrative medicine
• Clinicians experienced in evaluating Lyme disease
• Psychologists
• Nutritionists
• Breathing specialists
• Physiotherapy and rehabilitation professionals

Dr. Sinclair explains that the practice offers in-person and virtual consultations, including support for patients who are housebound or bedbound.

When a Doctor Becomes the Patient: Dr. Sinclair's Long COVID Journey

Dr. Sinclair's interest in complex post-infectious illness became deeply personal after he contracted COVID-19.

Before becoming ill, he describes himself as physically fit and health-conscious.

He grew up on an organic farm, spent time in the military, and maintained an active lifestyle.

Despite this background, his COVID-19 illness was followed by debilitating symptoms.

He recalls spending approximately three months largely confined to bed.

His symptoms included severe fatigue, cognitive difficulties, and problems with speech.

One particularly unusual experience involved temporarily struggling to speak English.

Although English is his native language, he found that he could communicate more easily in German, a language he had previously learned.

His wife spoke German, allowing them to communicate during this period.

Dr. Sinclair believes neurological inflammation may have contributed to these symptoms, although the interview does not establish the underlying neurological mechanism.

His experience gave him a new understanding of what patients face when everyday activities become overwhelming.

From Long COVID to a Lyme Disease Diagnosis

Initially, Dr. Sinclair believed his symptoms were related to long COVID.

As he began seeing patients with similar complaints, however, he noticed that some were not improving with the approaches his practice commonly used.

Many reported persistent fatigue, neurological symptoms, and difficulty returning to their previous level of functioning.

Dr. Sinclair began asking more detailed questions about potential tick exposure.

To his surprise, some patients recalled previous tick bites or activities that placed them at increased risk of exposure.

He also reconsidered his own history.

Dr. Sinclair describes spending time outdoors during military service, traveling extensively, and experiencing tick bites during childhood, including one in a Canadian forest when he was approximately eight years old.

He subsequently pursued testing for Lyme disease and other infections.

After attending an ILADS conference in Europe, he reports receiving a Lyme disease diagnosis.

He also describes laboratory findings involving Bartonella and Epstein-Barr virus.

Dr. Sinclair believes these findings helped him better understand his illness and influenced his clinical approach.

However, the presence of antibodies or other laboratory markers does not necessarily establish active infection or prove that an infection caused long COVID symptoms.

Research continues to investigate how SARS-CoV-2 infection, immune responses, and other infectious conditions may contribute to prolonged illness.

Can COVID-19 Trigger or Reactivate Other Infections?

One of the central questions in the interview is whether COVID-19 can influence previously acquired infections.

Dr. Sinclair discusses the possibility that immune changes following COVID-19 may contribute to the reactivation of certain pathogens or the emergence of symptoms associated with other illnesses.

He specifically raises questions about:

• Lyme disease and Borrelia
• Bartonella
• Babesia
• Epstein-Barr virus (EBV)
• Other possible contributors to post-infectious illness

Some research has identified associations between long COVID and evidence of Epstein-Barr virus reactivation or altered immune responses.

However, the hypothesis that COVID-19 routinely reactivates persistent Borrelia, Bartonella, or Babesia infections remains unproven.

Dr. Sinclair describes these possibilities as part of his evolving clinical perspective.

The conversation highlights the importance of investigating other potential diagnoses when patients experience persistent symptoms rather than automatically attributing every symptom to long COVID.

The Three Bs: Borrelia, Bartonella, and Babesia

Rich and Dr. Sinclair discuss three pathogen groups frequently mentioned in the Lyme disease community.

Borrelia: The Bacteria Associated With Lyme Disease

Borrelia burgdorferi and related bacteria cause Lyme disease.

Infections can produce symptoms involving the skin, joints, nervous system, and cardiovascular system.

Bartonella: A Group of Bacterial Infections

Bartonella species can cause several different human diseases.

Dr. Sinclair discusses Bartonella in relation to neurological symptoms and complex chronic illness.

He also raises questions about possible exposure through fleas, lice, and other arthropods.

Transmission pathways vary by Bartonella species, and some proposed routes remain uncertain.

Babesia: A Tick-Borne Parasite

Babesia parasites infect red blood cells and can cause babesiosis.

Symptoms may include fever, chills, fatigue, sweating, and anemia.

Severe disease can occur, particularly in people with certain underlying health conditions.

Dr. Sinclair explains that he has become increasingly interested in identifying possible Babesia infections among patients with overlapping symptoms.

Rich observes that more Tick Boot Camp guests have discussed diagnoses involving multiple pathogens in recent years.

They consider whether this reflects greater awareness, changes in testing, increased exposure, or other factors.

Importantly, not every Lyme disease patient has Bartonella or Babesia, and overlapping symptoms do not establish the presence of multiple infections.

Why Tick-Borne Diseases May Be Increasing in the UK

Dr. Sinclair discusses several environmental factors he believes may contribute to changing patterns of tick exposure in the United Kingdom.

These include:

• Climate change and milder winters
• Changes in seasonal tick activity
• Expanding or changing deer populations
• Migratory birds transporting ticks
• Greater awareness and reporting of tick-borne diseases
• Changes in land use and human exposure to tick habitats

He notes that his practice sees patients from areas associated with forests, deer populations, and known tick habitats.

He also discusses the New Forest and Bournemouth area, where tick exposure is an established concern.

Dr. Sinclair believes that environmental changes deserve more attention in public health planning.

While climate and wildlife ecology can influence tick distribution, the specific contribution of each factor varies by location and requires careful research.

Deer, Sheep, Migratory Birds, and Tick Exposure

Rich asks Dr. Sinclair about the relationship between wildlife populations and tick-borne diseases.

Dr. Sinclair describes observations from areas of England where deer populations have increased.

He recalls growing up near Knole Park, a historic deer park, and describes changes in the surrounding environment following a major storm in 1987.

He believes changes in deer movement and habitat may have influenced local tick exposure.

The conversation also turns to sheep farming and Babesia.

Dr. Sinclair notes that parts of southwestern England, including Cornwall, Devon, and Somerset, have substantial sheep populations.

He discusses possible ecological relationships involving livestock, ticks, and Babesia species.

These relationships are complex.

Different Babesia species have different animal reservoirs and transmission cycles, and the presence of deer or sheep does not automatically establish the source of human infection.

The discussion underscores the importance of understanding local ecology when investigating tick-borne disease risks.

Why Tick Prevention Matters Beyond the Woods

Dr. Sinclair and Rich emphasize that tick exposure is not limited to remote forests or wilderness areas.

People can encounter ticks while gardening, walking in parks, visiting rural properties, or spending time in areas frequented by wildlife.

Changing tick habitats make prevention education increasingly important.

Practical precautions include checking for ticks after outdoor activities, using appropriate repellents, wearing protective clothing, and removing attached ticks promptly.

For step-by-step prevention and tick bite guidance, explore Tick Boot Camp's Tick Bite Blueprint.

A Multidisciplinary Approach to Complex Chronic Illness

Dr. Sinclair explains that his private practice was designed to bring different healthcare disciplines together.

He believes that patients with complex illnesses may benefit from coordinated care addressing multiple aspects of health.

His team includes physicians, psychologists, nutrition professionals, breathing specialists, and rehabilitation providers.

The practice considers:

Medical evaluation: Investigating possible infections, post-infectious conditions, and other causes of symptoms.

Nutrition: Supporting adequate dietary intake and addressing relevant nutritional concerns.

Sleep: Identifying sleep disturbances and improving sleep routines where possible.

Psychological support: Helping patients cope with medical trauma, uncertainty, and the emotional effects of prolonged illness.

Breathing and rehabilitation: Addressing breathing-pattern difficulties, autonomic symptoms, and functional limitations.

Dr. Sinclair emphasizes that patients should not be reduced to a single symptom or laboratory result.

His approach reflects a broader philosophy of individualized, multidisciplinary care.

Medical Trauma, Stress, and the Nervous System

Rich and Dr. Sinclair discuss the psychological burden of living with an illness that is difficult to diagnose or treat.

Dr. Sinclair explains that his practice includes psychologists because patients may experience significant emotional distress after prolonged illness, repeated medical appointments, and feeling dismissed by healthcare professionals.

He also discusses how chronic stress, poor sleep, and autonomic nervous system disturbances can influence overall well-being.

The conversation recognizes that psychological support may be valuable even when a patient's primary illness is physical.

Medical trauma and emotional distress do not mean symptoms are imaginary or that patients are responsible for their illness.

Supporting mental health can be an important part of comprehensive care without replacing appropriate medical evaluation or treatment.

For a related conversation, listen to Tick Boot Camp's interview with Cathleen King about Primal Trust and nervous system regulation.

Breathwork, Dysautonomia, and Long COVID Recovery

Dr. Sinclair describes becoming interested in breathwork during his own recovery.

While largely confined to bed, he listened to podcasts discussing breathing techniques, including approaches associated with Wim Hof.

He subsequently incorporated breathing support into his practice.

His team works with patients experiencing breathing-pattern difficulties and certain autonomic symptoms.

He mentions approaches such as:

• Box breathing
• Slow, paced breathing
• Concordant breathing
• Individualized breathing exercises

Dr. Sinclair emphasizes that more intense methods, including Wim Hof-style breathing, are not appropriate for everyone.

This distinction is particularly important for people experiencing dysautonomia, post-exertional symptom exacerbation, dizziness, or other complex symptoms.

Breathing exercises may help some patients manage stress or breathing-pattern difficulties, but they are not established cures for Lyme disease or long COVID.

Patients should seek individualized guidance and avoid techniques that provoke significant symptoms.

Nutrition, Sleep, and Immune Health

Dr. Sinclair describes several lifestyle strategies he incorporated during his own recovery.

These included paying closer attention to nutrition, sleep, stress management, and daily routines.

He discusses:

• A diet emphasizing fiber and nutrient-rich foods
• Adequate sleep and consistent sleep patterns
• Natural daylight exposure to support circadian rhythms
• Meditation and relaxation
• Appropriate physical activity within individual limitations
• Breathwork and stress management

He also mentions experimenting with cold-water immersion.

However, cold-water immersion can pose risks, especially for people with cardiovascular problems or autonomic dysfunction, and it is not an established treatment for Lyme disease or long COVID.

Dr. Sinclair believes that supporting general health can complement medical treatment.

Lifestyle measures may contribute to overall well-being, but they should not be presented as substitutes for evidence-based treatment of active infections or other diagnosed conditions.

Treating Housebound and Bedbound Patients

One of the challenges Dr. Sinclair's practice addresses is access to care for people who cannot easily travel.

He explains that some patients are housebound or bedbound because of severe fatigue, neurological symptoms, or other functional limitations.

His team offers virtual consultations and, where available, home visits.

They may also work with family members and caregivers to coordinate care.

Dr. Sinclair says the practice serves patients throughout the UK and internationally, subject to professional and insurance restrictions.

At the time of the interview, he explains that the practice could not provide services to patients in the United States or Canada because of insurance limitations.

Children, Long COVID, and Complex Illness

Dr. Sinclair also discusses the growing number of children seen by his practice.

He explains that parents receiving care sometimes sought help for children experiencing persistent symptoms after COVID-19.

Drawing on his background in family medicine, he expanded the practice's work with pediatric patients.

He describes an interest in understanding whether some children with prolonged symptoms may have other medical conditions requiring investigation.

The conversation includes his clinical observations about possible infections such as Bartonella.

However, his estimates regarding the proportion of long COVID patients with co-infections are preliminary impressions from his practice, not established population-level findings.

Pediatric patients with persistent symptoms require careful, individualized assessment, and proposed infectious explanations should be evaluated using appropriate clinical evidence.

Lyme Disease Recognition and Treatment in the United Kingdom

Rich asks Dr. Sinclair whether Lyme disease awareness and medical support in the UK are improving.

Dr. Sinclair acknowledges growing recognition of tick-borne disease risks.

He also expresses concern that UK clinical guidance and healthcare systems have not evolved as quickly as he would like.

He discusses challenges involving:

• Access to specialized diagnostic testing
• Limited awareness of complex presentations
• Differences in clinical perspectives
• Financial constraints within the NHS
• The pace of research and guideline development
• Professional scrutiny surrounding controversial treatment approaches

Dr. Sinclair believes international conferences such as ILADS provide opportunities for clinicians to exchange research findings and learn from colleagues.

His comments reflect his personal assessment of the UK healthcare environment.

Established clinical guidance, emerging research, and contested treatment approaches should be distinguished when evaluating care options.

Why Dr. Sinclair Attends ILADS

Dr. Sinclair explains that ILADS provides an opportunity to connect with physicians and researchers from around the world.

He attends to learn about developments in testing, treatment, and scientific understanding of Lyme disease and associated conditions.

He values discussions with clinicians who work with patients experiencing complex symptoms.

The conference also allows him to compare his clinical experiences with those of practitioners in other countries.

Dr. Sinclair believes this international collaboration is especially valuable as research into post-infectious illness continues to evolve.

How to Work With Dr. Ben Sinclair

Dr. Sinclair is the founder of Dr. Finlay's Private Practice.

The practice provides private medical consultations focused on complex chronic illness, preventive medicine, and multidisciplinary care.

Services discussed in the interview include:

• In-person consultations in the United Kingdom
• Virtual medical consultations where permitted
• Evaluation of persistent symptoms and possible tick-borne infections
• Nutrition and lifestyle support
• Psychological support
• Breathing and rehabilitation services
• Coordination with patients' existing healthcare professionals

Dr. Sinclair explains that the practice operates on a self-pay basis and is not covered by insurance.

He emphasizes that his team cannot promise a cure but aims to provide individualized care and support.

Visit Dr. Finlay's Private Practice to learn more about services, locations, and appointment availability.

Key Takeaways

• Dr. Sinclair's own illness changed his medical career. After COVID-19, he experienced severe fatigue and neurological symptoms that left him largely bedbound for three months.
• Long COVID and other illnesses can have overlapping symptoms. A thorough evaluation may be necessary when patients experience persistent or unexplained problems.
• He later received a Lyme disease diagnosis. His personal experience influenced his interest in tick-borne and vector-borne infections.
• The three Bs are an important discussion topic. Borrelia, Bartonella, and Babesia can cause different illnesses with some overlapping symptoms.
• COVID-related immune changes remain an active research area. Proposed relationships between long COVID and persistent tick-borne infections require further investigation.
• Environmental changes may affect tick exposure. Climate, wildlife, habitat, and human activity can influence tick distribution.
• Medical trauma deserves recognition. Psychological support can help patients cope with the emotional burden of chronic illness.
• Multidisciplinary care may provide broader support. Dr. Sinclair's practice combines medical evaluation with nutrition, psychology, breathing support, and rehabilitation.
• Patients with severe limitations need accessible care. Virtual appointments and home visits may help those unable to travel.
• Hope and scientific curiosity can coexist. Dr. Sinclair encourages continued investigation while acknowledging that no treatment can guarantee recovery.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Ben Sinclair, founder of Dr. Finlay's Private Practice in the United Kingdom.

Rich and Dr. Sinclair discuss his experience with long COVID, his subsequent Lyme disease diagnosis, possible co-infections, tick-borne disease awareness in the UK, and his multidisciplinary approach to complex chronic illness.

The interview also explores the role of nutrition, sleep, nervous system support, and coordinated healthcare in helping patients manage persistent symptoms.

Discover additional conversations with international physicians, researchers, and patient advocates through Tick Boot Camp's LIVE from ILADS podcast series.

What if one blood test could detect Lyme disease, Bartonella, and Babesia at the same time—without relying on the body's antibody response?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Jennifer Miller, PhD, of Galaxy Diagnostics to discuss a new generation of direct detection tests designed to help doctors identify Lyme disease and other difficult-to-detect vector-borne infections.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why conventional Lyme disease testing can miss infections, how Borrelia may interfere with antibody development, and how digital PCR technology can search for Borrelia, Bartonella, and Babesia DNA in a single blood sample.

Dr. Miller explains how Galaxy Diagnostics developed a digital PCR assay that divides a blood sample into approximately 26,000 individual reactions, increasing the analytical ability to detect small amounts of pathogen DNA.

She also announces that the assay became commercially available in March 2025 and explains how patients can work with their healthcare providers to access testing.

For patients who have experienced years of diagnostic uncertainty, this conversation offers an encouraging look at emerging technologies that could help improve the diagnosis of Lyme disease and associated infections.

Meet Dr. Jennifer Miller, PhD

Dr. Jennifer Miller, PhD is Vice President of Clinical and Scientific Operations at Galaxy Diagnostics, a laboratory specializing in diagnostic testing for difficult-to-detect vector-borne infections.

Her work focuses on developing and validating diagnostic technologies for pathogens such as Borrelia, Bartonella, and Babesia.

Dr. Miller has extensive experience researching vector-borne pathogens and translating laboratory discoveries into clinical diagnostic tools.

During the interview, Rich mentions a previous conversation with Galaxy Diagnostics CEO Nicole Bell, who helped introduce him to the company's work.

Dr. Miller discusses returning to Galaxy Diagnostics and working with its scientific team to develop more sensitive direct detection methods.

Their shared goal is to provide clinicians with better diagnostic tools while helping patients avoid unnecessary delays, repeated testing, and prolonged uncertainty.

Why Lyme Disease Testing Can Miss Infections

Rich begins by addressing one of the most frustrating challenges facing the Lyme disease community: patients can experience significant symptoms while repeatedly receiving negative laboratory results.

He asks Dr. Miller to explain why Lyme disease testing remains difficult and what researchers are doing to improve it.

Dr. Miller begins by describing two fundamentally different approaches to infectious disease testing.

Indirect testing looks for the body's immune response to a pathogen.

Direct testing searches for material associated with the pathogen itself, such as its proteins or genetic material.

Understanding the difference is important because these tests answer different questions.

Indirect Lyme Disease Testing: Looking for Antibodies

Most commonly used Lyme disease blood tests are indirect tests.

They look for antibodies produced by the immune system after exposure to Borrelia, the bacteria responsible for Lyme disease.

Dr. Miller uses a simple analogy to explain the limitations of antibody testing.

An antibody is like a sign left behind by someone who visited a location.

The sign says:

“I was here.”

But it doesn't tell you whether that visitor is still present or whether they left months or years earlier.

Similarly, Lyme disease antibodies may remain detectable after an infection has been treated.

A positive antibody test therefore does not necessarily establish that a person currently has an active infection.

Conversely, someone with a recent infection may not yet have produced enough detectable antibodies for a test to become positive.

This creates a diagnostic window during which early Lyme disease can be missed.

For more information about testing limitations, explore Tick Boot Camp's Lyme disease testing resources.

Sensitivity, Specificity, and Cross-Reactivity

Dr. Miller explains that diagnostic tests are evaluated using two important measurements.

Sensitivity describes how effectively a test identifies people who have a particular condition.

A test with inadequate sensitivity may produce false-negative results.

Specificity describes how effectively a test identifies people who do not have that condition.

A test with inadequate specificity may produce false-positive results.

She also discusses cross-reactivity, which occurs when an antibody recognizes a target that resembles something other than the intended pathogen.

Dr. Miller compares antibody testing patterns to a barcode.

Different parts of the barcode represent responses to different proteins.

However, some proteins may be shared across related organisms or resemble proteins from other infectious agents.

This can complicate test interpretation.

She emphasizes that both the biological behavior of Borrelia and the design of the assay influence how well a test performs.

IgM vs. IgG: Understanding the Immune Response

Rich asks Dr. Miller to explain why different antibody classes matter when diagnosing Lyme disease.

IgM Antibodies

IgM antibodies are commonly associated with the early immune response.

Dr. Miller describes IgM as a broad responder that can recognize certain targets before the immune system develops a more refined response.

This broad recognition can be useful during early infection but can also contribute to cross-reactivity.

IgG Antibodies

IgG antibodies commonly develop as the immune response matures.

Through biological processes known as affinity maturation and class switching, the immune system can produce antibodies that recognize specific targets more effectively.

Dr. Miller explains that the timing and quality of these responses can affect the performance of antibody-based diagnostic tests.

However, neither IgM nor IgG results alone can reliably determine whether Borrelia remains actively present after treatment.

How Borrelia May Interfere With Antibody Development

One of the most scientifically interesting parts of the conversation explores how Borrelia may influence the immune system.

Dr. Miller discusses research suggesting that Borrelia infection can disrupt processes involving B cells, the immune cells responsible for producing antibodies.

She explains that an effective antibody response involves several steps.

First, the immune system recognizes a pathogen.

Next, B cells begin producing antibodies.

Over time, the immune response can become more refined, generating antibodies that bind more effectively to their targets.

Dr. Miller describes how Borrelia may interfere with these processes.

She uses an analogy involving rooms and doors.

Imagine that a B cell needs access to different rooms to develop and improve its antibodies.

In her analogy, Borrelia interferes with access to those rooms, disrupting the processes needed for antibody maturation.

This may help explain why some immune responses to Borrelia develop differently than expected.

Dr. Miller also discusses how these effects could influence the transition from IgM to IgG antibodies.

These mechanisms remain an active area of scientific investigation, and experimental findings do not mean that every patient with Lyme disease experiences the same immune dysfunction.

Direct Detection: Looking for the Pathogen Itself

Rich then asks Dr. Miller to explain the alternative to antibody-based testing.

Rather than measuring the immune response, direct detection methods look for evidence of the pathogen.

Dr. Miller describes two approaches being developed or offered by Galaxy Diagnostics.

Urine Antigen Testing

An antigen is a molecule associated with a pathogen, often a protein.

Dr. Miller explains that Galaxy has developed testing designed to detect certain Borrelia antigens shed into urine.

The goal is to identify pathogen-associated material without relying on antibody production.

PCR Testing

Polymerase chain reaction, or PCR, detects specific sequences of genetic material.

For Lyme disease, PCR testing attempts to identify Borrelia DNA.

However, Borrelia can be difficult to detect in blood because the organism may circulate at very low concentrations.

Dr. Miller explains that Galaxy's newer approach uses digital PCR, a technology designed to improve the detection of small amounts of genetic material.

Direct detection has important limitations as well. A negative result does not necessarily exclude infection, and detecting DNA does not automatically establish that live organisms are present.

Digital PCR: Finding the Needle in 26,000 Haystacks

One of the interview's most memorable explanations involves searching for a needle in a haystack.

Rich recalls how Nicole Bell described Galaxy's digital PCR technology.

Traditional PCR can be compared to searching for a tiny needle in a large pile of hay.

Digital PCR divides the sample into thousands of smaller sections, making it easier to identify a target when very little genetic material is present.

Dr. Miller explains that Galaxy's assay partitions a sample into approximately 26,000 individual reactions.

Each partition is analyzed for the presence or absence of specific pathogen DNA.

Rather than analyzing everything in one reaction, the technology evaluates thousands of smaller reactions.

This can improve analytical sensitivity under appropriate conditions.

However, the technology cannot detect pathogen DNA that is absent from the collected sample or present below the assay's detection threshold.

One Blood Test for Borrelia, Bartonella, and Babesia

The biggest announcement in the interview concerns Galaxy's ability to investigate three major pathogen groups using one blood sample.

Borrelia: Lyme Disease and Relapsing Fever

Borrelia includes bacteria responsible for Lyme disease and certain forms of relapsing fever.

Dr. Miller explains that Galaxy's assay is designed to recognize genetic sequences shared across different Borrelia organisms.

This includes targets associated with Lyme disease Borrelia and relapsing fever Borrelia.

Bartonella: A Difficult-to-Detect Bacterial Infection

Bartonella is a group of bacteria associated with several human illnesses.

Different Bartonella species can cause different clinical manifestations, including cat-scratch disease and certain bloodstream infections.

Dr. Miller discusses how genus-level genetic targets may help identify members of the Bartonella group without requiring a completely separate assay for every species.

Babesia: A Tick-Borne Parasite

Babesia is a group of parasites that infect red blood cells.

Babesiosis can cause fever, chills, fatigue, anemia, and potentially serious complications, particularly in vulnerable patients.

Dr. Miller explains that Galaxy's assay can investigate Babesia genetic material alongside Borrelia and Bartonella.

The ability to test for all three pathogen groups in one sample may provide additional information when clinicians suspect overlapping infections.

It does not mean every person with Lyme disease has all three infections or that every patient requires testing for all three.

What Is Genus-Level Detection?

Rich asks Dr. Miller whether Galaxy's assay can detect different species and strains within each pathogen group.

Dr. Miller explains that the test uses genetic targets shared by members of a particular genus.

She compares this to recognizing a family rather than identifying each individual cousin.

For example, different Bartonella species may share genetic sequences that allow them to be recognized as belonging to the same broader group.

By targeting those shared sequences, an assay can potentially detect multiple related organisms.

This approach may broaden detection while reducing the need for separate targets for every species.

However, genus-level detection does not necessarily identify the exact species or strain responsible for an infection.

Actual coverage depends on the assay's design and validation.

Why Testing for Multiple Infections Matters

Rich discusses how Tick Boot Camp interviews have increasingly featured patients reporting diagnoses involving multiple tick-borne or vector-borne infections.

He explains that earlier conversations often focused primarily on Borrelia.

More recently, patients have frequently discussed Bartonella and Babesia alongside Lyme disease.

Dr. Miller agrees that clinicians sometimes need to investigate more than one possible infection because symptoms can overlap.

For example, fatigue, headaches, and other nonspecific symptoms may occur with several different illnesses.

Testing for multiple pathogens may help clinicians narrow their differential diagnosis when a patient's history supports that evaluation.

She also emphasizes the financial consequences of repeatedly visiting providers and undergoing separate tests.

Better diagnostic tools could potentially help streamline this process.

However, the prevalence of co-infections varies by geographic region, exposure history, and pathogen. The experiences of podcast guests should not be interpreted as evidence that most Lyme disease patients have all three infections.

Can Direct Testing Distinguish a Past Infection From a New Infection?

Rich shares his history of numerous tick bites over several decades.

He explains that one of his concerns about antibody testing is its inability to reliably determine when an infection occurred.

Dr. Miller agrees that prior infections can complicate interpretation because antibodies may persist long after the original exposure.

She discusses how direct detection may provide different information by searching for pathogen-associated genetic material rather than antibodies.

This could be especially useful when evaluating someone with a history of previous tick-borne infections and new symptoms.

However, a positive PCR result does not always distinguish live infection from residual DNA, and a negative result cannot exclude every active infection.

Clinical history, examination findings, and other testing remain important.

Galaxy's Digital PCR Test Became Available in March 2025

Rich asks when patients will be able to access the new technology.

Dr. Miller shares that Galaxy's digital PCR assay had already completed laboratory validation and became commercially available in March 2025.

She explains that the laboratory operates under clinical laboratory quality requirements and that the scientific team had worked extensively to validate the assay.

She expresses excitement about making the technology available to healthcare professionals investigating difficult-to-detect infections.

Commercial availability and laboratory validation are important milestones, but they do not establish that the assay can detect every infection or that it outperforms all other diagnostic methods in every clinical situation.

Independent clinical performance data remain important when evaluating new testing technologies.

Can Patients Order Galaxy's Digital PCR Test Directly?

Rich asks a practical question that many listeners will have.

Can patients order the test themselves, or does a healthcare professional need to request it?

Dr. Miller explains that, at the time of the interview, the test required an order from a practitioner.

Galaxy Diagnostics provides educational resources that patients can share with their healthcare professionals.

These include information about available tests, scientific literature, frequently asked questions, and provider ordering procedures.

Patients interested in learning more can visit Galaxy Diagnostics.

Current test availability, ordering requirements, and pricing should be confirmed directly with the laboratory.

Could Better Lyme Disease Testing Reduce Healthcare Costs?

Dr. Miller discusses the financial and emotional burden of diagnostic uncertainty.

Patients may spend years visiting multiple healthcare professionals, undergoing repeated tests, and searching for explanations.

Each additional appointment can create expenses, delays, and frustration.

She hopes that improved direct detection technologies will help clinicians make more informed decisions sooner.

Rich emphasizes the importance of making diagnostic testing more accessible and efficient for patients.

The conversation reflects a shared goal: reducing the time people spend searching for answers and helping them access appropriate care.

Whether any specific new test reduces costs or improves long-term patient outcomes requires further study.

The Future of Lyme Disease Diagnostics

Dr. Miller describes Galaxy's work as part of an effort to develop the next generation of direct detection tools.

She believes technologies such as digital PCR may help address limitations associated with antibody-based testing.

The conversation also highlights the importance of scientific collaboration, continued validation, and patient-centered research.

Rich expresses hope that accurate and affordable testing will eventually become more accessible to people living in regions where tick-borne diseases are common.

For patients who have experienced diagnostic uncertainty, the development of new testing approaches offers reasons for cautious optimism.

Key Takeaways

• Conventional Lyme disease testing has limitations. Antibody tests may miss early infections and cannot reliably distinguish past exposure from current infection.
• Direct and indirect tests answer different questions. Indirect tests measure immune responses, while direct tests search for pathogen-associated material.
• Borrelia may affect antibody development. Dr. Miller discusses research into how infection can interfere with B-cell function and antibody maturation.
• Digital PCR uses thousands of reactions. Galaxy's technology partitions a sample into approximately 26,000 individual reactions.
• One sample can be tested for three pathogen groups. The assay targets Borrelia, Bartonella, and Babesia.
• Genus-level detection may identify multiple related species. The approach targets shared genetic sequences rather than every strain individually.
• Relapsing fever Borrelia is also part of the discussion. Galaxy designed its assay to investigate a broader range of Borrelia organisms.
• The assay became commercially available in March 2025. Dr. Miller describes the laboratory's validation and launch.
• Practitioner ordering was required at the time of recording. Patients can review Galaxy's resources with their healthcare providers.
• Better diagnostics could reduce uncertainty. Continued research is needed to determine how emerging tests affect patient care and outcomes.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Jennifer Miller, PhD, of Galaxy Diagnostics, discussing advances in Lyme disease and vector-borne infection testing.

Rich and Dr. Miller explore the limitations of antibody testing, the science of immune responses, urine antigen testing, digital PCR, and the ability to investigate Borrelia, Bartonella, and Babesia in a single blood sample.

Discover additional interviews with scientists, physicians, and diagnostic innovators through Tick Boot Camp's LIVE from ILADS podcast series.

After seeing approximately 22 medical practitioners, undergoing more than a dozen procedures, and facing a possible ALS diagnosis, Darlene DeBauer O'Connor finally received a Lyme disease diagnosis that changed her life. Today, she's helping other families overcome one of the biggest barriers to healing: the cost of care.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases (NELAD) Resource Foundation, to discuss her family's experience with Lyme disease, the devastating consequences of delayed diagnosis, and a new nonprofit providing financial assistance for testing and treatment.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores Lyme disease misdiagnosis, ALS-like symptoms, neurological complications, family-wide tick-borne illness, treatment costs, patient advocacy, and financial grants of up to $3,000 per person annually.

Darlene shares how her diagnosis on October 16, 2013, led to other family members seeking answers, why her brother's death strengthened her commitment to advocacy, and how years of educational outreach revealed a critical problem: Knowing where to find help means little when patients cannot afford to access it.

Her story is one of resilience, family, community, and turning personal suffering into practical support for others.

From Possible ALS to a Lyme Disease Diagnosis

In her 40s, Darlene was working as a public school teacher in Massachusetts when she began experiencing increasingly debilitating symptoms.

What started as fatigue and headaches progressed into a frightening combination of physical, neurological, and psychological problems.

Her symptoms included:

• Extreme fatigue and difficulty getting out of bed
• Severe headaches and recurring fevers
• Migrating pain throughout her body
• Muscle weakness, tripping, and falling
• Difficulty walking
• Bladder control problems
• Neurological and psychological symptoms

Darlene consulted approximately 22 medical practitioners across multiple specialties, including cardiology, neurology, and infectious disease.

She underwent more than a dozen procedures while searching for an explanation.

Eventually, clinicians began considering amyotrophic lateral sclerosis (ALS), a progressive neurological disease.

The possibility was devastating.

Darlene remembers becoming increasingly frightened as her condition worsened and her independence disappeared.

Ten Negative Lyme Tests Before Getting Answers

Despite living in a region where Lyme disease is common, Darlene reports receiving approximately 10 negative Lyme disease tests during her diagnostic journey.

On October 16, 2013, her sister brought her to a practitioner in Wilton, Connecticut.

After reviewing her symptoms and medical history, the practitioner diagnosed her clinically with Lyme disease and investigated possible additional infections.

Darlene describes that appointment as the turning point in her life.

She calls the anniversary her personal “D-Day,” meaning Diagnosis Day.

For the first time, she felt she had an explanation for the illness that had disrupted her life.

She began treatment and gradually experienced improvements, although she also recalls difficult reactions during the process.

Her experience highlights the importance of interpreting Lyme disease testing alongside clinical findings and exposure history.

Antibody tests can produce false-negative results, particularly early in infection. However, repeated negative results later in an illness require careful consideration of other possible diagnoses as well.

For more information, explore Tick Boot Camp's Lyme disease testing resources.

When One Diagnosis Leads an Entire Family to Seek Answers

Darlene's diagnosis had consequences far beyond her own health.

She is the youngest of five children in a close-knit Italian-American family.

After learning more about Lyme disease and associated infections, she began recognizing similarities between her experiences and symptoms reported by siblings, nieces, nephews, and other relatives.

Family conversations increasingly focused on tick exposure, unexplained symptoms, and the possibility of tick-borne illness.

Darlene describes a cascade of additional diagnoses among family members.

She explains that relatives were evaluated by different healthcare professionals rather than a single practitioner.

Over time, she reports that most affected family members experienced meaningful improvement.

The family's experiences strengthened her belief that education and early recognition are essential.

Importantly, similar symptoms within a family do not necessarily establish a shared infection. Tick exposure, other medical conditions, and individual diagnostic findings must be evaluated separately.

Losing Her Brother and the Questions Surrounding Lewy Body Dementia

One of the most emotional moments in the interview comes when Darlene discusses the death of her brother.

She believes complications associated with vector-borne illness contributed to his neurological decline and eventual diagnosis of Lewy body dementia.

She describes a period during which he appeared to improve, followed by worsening symptoms and rapid deterioration.

His death remains a profound loss for the family.

Darlene's experience raises questions about the relationship between infectious diseases, neurological inflammation, and neurodegenerative conditions.

However, a causal relationship between Lyme disease or other tick-borne infections and Lewy body dementia has not been established.

Her brother's story reflects the family's understanding of his illness and the grief that continues to motivate their advocacy.

Why Tick Prevention Education Matters

Before becoming ill, Darlene believed she understood tick prevention.

She had worked as an education coordinator for Mass Audubon and was familiar with outdoor safety.

However, she admits that her understanding of Lyme disease was limited.

She believed avoiding heavily wooded areas and removing visible ticks would provide adequate protection.

Her perspective changed dramatically after her diagnosis.

Darlene also recalls a tick bite involving her son at a Massachusetts hospital and wishing the tick had been saved for identification.

Rich and Darlene discuss the importance of recognizing that tick exposure can occur in ordinary environments, including residential yards, gardens, and recreational spaces.

They also reflect on how little Lyme disease education they received during their school years in the Northeast.

Their conversation emphasizes that prevention education should begin long before someone becomes ill.

For practical guidance on tick checks, tick removal, and what to do after a bite, visit Tick Boot Camp's Tick Bite Blueprint.

Turning Lyme Disease Into a Mission

As Darlene began recovering, she and her sister became involved with Central Mass Lyme, a Massachusetts organization focused on education and awareness.

Darlene served on its conference committee, while her sister participated on the organization's board.

Together with other advocates, they helped organize four educational conferences.

One conference attracted approximately 500 attendees.

Speakers included prominent Lyme disease clinicians and researchers such as:

• Dr. Stephen Phillips
• Dr. Daniel Cameron
• Dr. Neil Spector
• Dr. Bill Rawls

These events connected patients, caregivers, healthcare professionals, authors, and advocates.

Darlene also began speaking publicly about her family's experience.

Her presentations resonated with people who had spent years searching for answers.

But as more patients approached her after speaking engagements, she noticed a recurring problem.

People weren't simply asking what Lyme disease was.

They wanted to know how to find a knowledgeable practitioner and how to pay for testing and treatment.

The Missing Piece: Financial Assistance for Lyme Disease Patients

Darlene and her sister realized that education alone could not solve the challenges facing many families.

Even when patients identified a healthcare professional they wanted to see, financial barriers often prevented them from obtaining care.

Some practitioners had long waiting lists.

Others required out-of-pocket payments that families could not afford.

Testing, medical appointments, medications, and supportive therapies could create substantial financial strain.

Darlene and her sister decided to establish an organization that would combine education and emotional support with direct financial assistance.

That decision led to the creation of the Northeast Lyme and Associated Diseases Resource Foundation, commonly known as NELAD.

What Is the NELAD Resource Foundation?

The NELAD Resource Foundation is a nonprofit organization focused on helping people affected by Lyme disease and associated illnesses.

Its mission includes three interconnected areas:

Education and awareness: Helping patients, families, and communities better understand Lyme disease and associated conditions.

Emotional support: Connecting individuals and families through support groups and shared experiences.

Financial assistance: Providing grants to help eligible patients access testing and treatment.

Although NELAD is based in New England, particularly Massachusetts and Rhode Island, Darlene explains that its assistance is not limited to those states.

At the time of the interview, the foundation had already provided funding to recipients in 10 additional states, including Texas.

Darlene emphasizes that the organization focuses on families and does not impose an age limit on applicants.

NELAD Grants: Up to $3,000 Per Person Per Year

One of the most valuable parts of the interview is Darlene's explanation of NELAD's financial assistance program.

At the time of recording, the foundation offered grants of up to $3,000 per person, per year, subject to eligibility, available funding, and the organization's approval process.

Because the program supports individual family members, more than one person within a household may potentially qualify.

Darlene also explains that previously funded applicants may reapply in subsequent years.

The grants are intended to reduce financial barriers to Lyme disease-related testing and treatment.

Darlene describes assistance for conventional medical care as well as certain integrative services when supported by documentation from a practitioner.

The foundation evaluates applications and determines funding based on its own criteria.

Grant availability, covered services, and funding limits may change. Applicants should confirm current requirements directly with NELAD.

How to Apply for NELAD Financial Assistance

Darlene explains that the foundation deliberately designed its application process to be manageable for people dealing with significant illness.

Applicants can begin through the organization's website.

The process she describes includes:

• Complete a preliminary application. Applicants can submit the form online or print and mail it.
• Provide basic information. The initial form allows the foundation to review the request before collecting extensive documentation.
• Indicate willingness to provide supporting records. These may include tax documents, disability information, or a practitioner's recommendation.
• Wait for application review. The foundation evaluates requests and determines eligibility and available assistance.

Darlene emphasizes that patients do not need to gather every supporting document before beginning the preliminary process.

This approach is intended to make applying less overwhelming for people already managing difficult health circumstances.

Visit NELAD.org to learn about financial assistance and apply.

Donated Lyme Disease Testing and Additional Support

Darlene also announces that a specialty laboratory, identified in the transcript as IGeneX, committed to donating 10 Lyme disease tests annually to support the foundation's work.

She describes this partnership as an important opportunity to help patients who cannot afford certain diagnostic services.

The interview also discusses NELAD's willingness to consider different treatment-related expenses when supported by a healthcare practitioner's recommendation.

These may include medications and certain complementary approaches.

However, the foundation's willingness to fund a service should not be interpreted as evidence that the service is medically effective.

Patients should discuss the risks, benefits, and supporting evidence for any proposed treatment with qualified healthcare professionals.

Why Lyme Disease Advocacy Requires Collaboration

Darlene repeatedly emphasizes the importance of organizations working together.

Although NELAD developed from her experiences with Central Mass Lyme, she continues to value that relationship.

She believes the challenges facing the Lyme disease community are too significant for any one organization to address alone.

Education, patient support, research, financial assistance, and public policy advocacy all serve important purposes.

Rich agrees and invites Darlene and her sister to return for a longer Tick Boot Camp interview.

He wants listeners to learn more about the family's experiences and the resources available through NELAD.

Their conversation demonstrates how different advocacy organizations can complement one another while helping patients find the support they need.

Key Takeaways

• Lyme disease can be difficult to diagnose. Darlene saw approximately 22 practitioners and received numerous negative tests before her diagnosis.
• Severe symptoms deserve thorough evaluation. Her illness included neurological problems, weakness, difficulty walking, and symptoms that raised concerns about ALS.
• A diagnosis can affect an entire family. Darlene's experience prompted relatives to investigate their own unexplained symptoms.
• Loss can inspire advocacy. Her brother's death strengthened her commitment to helping others.
• Education is essential. Her work with Central Mass Lyme helped bring conferences and patient resources to the community.
• Financial barriers can prevent access to care. Darlene and her sister founded NELAD after recognizing that many patients could not afford testing and treatment.
• NELAD provides direct financial assistance. At the time of the interview, grants were available for up to $3,000 per person annually.
• Families are a priority. The foundation considers applicants of all ages and may assist multiple members of a household.
• Patients can apply online or by mail. NELAD designed its preliminary application to minimize the initial paperwork burden.
• Collaboration strengthens advocacy. Patient organizations can work together to expand education, financial assistance, and community support.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases Resource Foundation.

Rich and Darlene discuss her 2013 Lyme disease diagnosis, her family's experiences with tick-borne illnesses, the emotional impact of losing her brother, and the creation of a nonprofit dedicated to helping patients access care.

The interview provides practical information about NELAD's grant program and its efforts to support families facing the financial burden of Lyme disease.

Explore additional patient stories, advocacy organizations, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

What if the biggest obstacle to diagnosing Lyme disease isn't a lack of symptoms—but the limitations of the tests doctors rely on?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Liz Horn, PhD, Principal Investigator of the Lyme Disease Biobank, a research program of the Bay Area Lyme Foundation, to explore why Lyme disease testing remains challenging and how new diagnostic technologies could change the future of patient care.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation covers early Lyme disease testing, antibody detection, FDA-cleared diagnostics, persistent symptoms after treatment, tissue donation, and the research needed to better understand Borrelia and other tick-borne pathogens.

Dr. Horn explains how researchers are using donated blood, urine, and human tissue samples to develop more accurate tests, investigate persistent symptoms, and study what tick-borne pathogens may be doing inside the body.

She also shares encouraging developments involving IGeneX, emerging multiplex antibody tests, and a growing research network that gives patients meaningful opportunities to contribute to scientific progress.

Her message is hopeful: Better Lyme disease diagnostics are possible, and patients can play an important role in making them a reality.

Meet Dr. Liz Horn, PhD

Dr. Liz Horn is the Principal Investigator of the Lyme Disease Biobank, a research initiative of the Bay Area Lyme Foundation.

She began working on the biobank in 2013, with biological sample collection beginning in 2014.

The program was created to address a major obstacle in Lyme disease research: scientists often lack access to well-characterized patient samples needed to develop and validate diagnostic tests.

Dr. Horn explains that a survey conducted in January 2025 found that approximately 85% of participating researchers still lacked some of the samples they needed.

Through the biobank, her team collects, processes, and distributes samples to qualified researchers investigating Lyme disease and associated infections.

At the time of the interview, the program had enrolled more than 1,250 participants and supported over 115 research projects.

Why Lyme Disease Testing Remains So Difficult

Dr. Horn explains that most commonly used Lyme disease diagnostic tests do not directly detect the bacteria responsible for the infection.

Instead, they measure the body's immune response.

This distinction is especially important during early infection, when the immune system may not yet have produced detectable antibodies.

She describes two major categories of diagnostic testing.

Direct Testing: Looking for Borrelia Itself

A direct test attempts to identify the pathogen or its genetic material.

For Lyme disease, that means detecting evidence of Borrelia rather than measuring the immune system's response to it.

Dr. Horn explains that researchers still need better direct detection methods.

The development of reliable direct tests could provide new opportunities for diagnosing infection, particularly in situations where antibody testing is inconclusive.

Indirect Testing: Looking for Antibodies

Indirect tests, including commonly used Lyme disease serology tests, measure antibodies produced in response to infection.

The challenge is that antibodies take time to develop.

Dr. Horn explains that a person may have Lyme disease before their immune response becomes detectable through laboratory testing.

This creates a diagnostic window during which an infected patient may test negative.

A negative Lyme disease antibody test early after infection does not necessarily rule out Lyme disease.

For more information about testing limitations, explore Tick Boot Camp's Lyme disease testing resources.

Why Two Lyme Disease Tests Can Produce Different Results

One of the interview's most revealing discussions concerns differences between laboratory assays.

Dr. Horn explains that two FDA-cleared first-tier antibody tests may not identify exactly the same patients.

A sample that tests negative using one assay may test positive using another.

This means the specific test used by a laboratory can influence whether an infection is detected.

Dr. Horn describes how the Lyme Disease Biobank's well-characterized samples help researchers evaluate these differences.

Her work underscores why test sensitivity, specificity, timing, and clinical context all matter when interpreting Lyme disease results.

New Lyme Disease Tests: IGeneX and Multiplex Antibody Technology

Dr. Horn discusses several promising diagnostic developments supported by biobank samples.

IGeneX and FDA-Cleared Lyme Disease Testing

She highlights an IGeneX diagnostic assay that received FDA clearance with the help of clinical samples provided by the Lyme Disease Biobank.

These samples allowed researchers to evaluate how the test performed in people with documented clinical histories.

Dr. Horn emphasizes that access to carefully characterized samples is essential for developing and validating new diagnostic technologies.

FDA clearance does not mean a test is perfect or appropriate for every clinical situation, but it represents an important regulatory milestone.

Multiplex Testing: Looking at More Than One Antibody Target

Dr. Horn also describes research involving a company referred to in the interview as Embios.

Its experimental approach examines multiple Borrelia antibody targets rather than relying on a single target.

She explains that Borrelia expresses different proteins, known as antigens, that may trigger different antibody responses.

A multiplex test can examine several antibody targets simultaneously.

Dr. Horn uses a simple analogy:

Looking at one target is like taking one photograph. Looking at ten targets provides ten different snapshots.

Researchers hope this broader approach may improve the ability to detect Lyme disease at different stages of infection.

However, these approaches still require rigorous validation to establish their accuracy and clinical usefulness.

Could New Lyme Tests Detect Infection Earlier?

Dr. Horn discusses research involving two experimental single-tier serology tests.

According to the findings she describes, these approaches showed promise for identifying Lyme disease earlier than some conventional testing methods.

She references the possibility of detecting infection approximately one week after symptom onset in certain study settings.

That would represent a meaningful advance for patients who currently face uncertainty during the early stages of infection.

However, these findings do not mean that every patient can currently obtain a reliable positive test one week after infection.

Larger studies, regulatory review, and clinical validation are necessary before new diagnostic approaches can become widely adopted.

Why Some Patients Don't Develop the Expected IgG Antibody Response

Dr. Horn describes research involving patients who received treatment for early Lyme disease.

She explains that clinicians often expect an IgG antibody response to develop as time passes.

However, her research found that some treated patients did not develop the anticipated detectable IgG response.

This process, known as seroconversion, can be affected by the timing of infection and treatment.

Dr. Horn explains that antibiotic treatment may change the development of measurable antibodies.

This is particularly important when interpreting follow-up testing.

The absence of a later positive IgG test does not necessarily mean an earlier Lyme disease diagnosis was incorrect.

Likewise, antibody results alone cannot reliably establish whether an infection remains active after treatment.

One in Five Patients Still Had Symptoms Three Months Later

Dr. Horn discusses a study involving patients with early Lyme disease who were followed after treatment.

She reports that approximately 20% continued experiencing symptoms three months later, despite receiving treatment early in their illness.

These patients had been evaluated at clinical sites experienced in recognizing early Lyme disease.

The finding raises important questions about why some people experience persistent symptoms even after timely diagnosis and treatment.

Dr. Horn believes further research is needed to understand the biological mechanisms involved and develop better tools for evaluating patients who remain ill.

Persistent symptoms after Lyme disease treatment are real and deserve appropriate medical attention, but they do not by themselves establish that live Borrelia bacteria remain present.

For additional research and patient perspectives, explore Tick Boot Camp's Lyme Persists educational resources.

What Is the Lyme Disease Biobank?

Rich asks Dr. Horn to explain the biobank in practical terms for patients and caregivers.

She describes it as a collection of biological samples donated by people who participate voluntarily in research.

The program includes samples from individuals with early Lyme disease and people experiencing persistent symptoms.

Depending on the study, participants may provide:

• Blood samples
• Urine samples
• Information about symptoms and medical history
• Follow-up samples over time
• Certain tissues collected during qualifying surgical procedures

These materials are processed and made available to researchers developing diagnostic tests and investigating disease mechanisms.

Dr. Horn explains that scientists benefit from knowing the clinical background associated with each sample.

Without that information, it becomes much harder to determine whether a diagnostic test accurately identifies the patient population it is intended to serve.

The Lyme Disease Tissue Bank: Studying Borrelia and Bartonella Inside the Body

One of the most important initiatives discussed is the Lyme Disease Tissue Bank, launched in 2019.

The program collects selected tissues donated after death by people who had Lyme disease or other tick-borne infections.

At the time of the interview, Dr. Horn reports that 27 individuals had donated tissues, including brain tissue.

Additional tissue types may include:

• Heart
• Liver
• Spleen
• Bladder
• Muscle
• Peripheral nerves and other nervous system tissues

These donations allow researchers to investigate where pathogens or their components may be found and how they might relate to disease processes.

Dr. Horn emphasizes that the program is not a whole-body donation program.

Instead, it coordinates the recovery of specific tissues for scientific study.

Participants interested in postmortem donation must register in advance so arrangements can be made.

The program can coordinate donations across much of the United States.

How Tissue Donations Could Help Explain Persistent Lyme Symptoms

Dr. Horn believes studying human tissue may help answer questions that cannot be resolved through blood testing alone.

Researchers are interested in understanding whether Borrelia, Bartonella, or other pathogens—or evidence of their prior presence—can be identified in specific tissues.

The findings could help scientists investigate disease mechanisms, improve diagnostic methods, and identify future research priorities.

The tissue bank also provides an opportunity to study neurological and other organ-specific complications associated with tick-borne illnesses.

However, finding bacterial material in tissue does not automatically establish active infection or prove that the organism caused a particular symptom.

These questions require careful scientific investigation.

More Than 115 Research Projects Supported

Dr. Horn explains that the biobank has supported more than 115 research projects.

Not every project produces a successful diagnostic test.

Some experimental approaches fail to demonstrate adequate accuracy.

She emphasizes that these negative findings are still valuable.

They help researchers identify which approaches are unlikely to work and avoid repeating unsuccessful experiments.

The biobank also asks participating researchers to share performance data from their studies.

This allows the program to build knowledge about how different tests perform using its samples.

Dr. Horn believes this collaborative model accelerates research by allowing scientists to focus on developing and evaluating new technologies rather than independently recruiting every patient needed for early investigations.

How Lyme Disease Patients Can Contribute to Research

Near the end of the interview, Rich asks how Tick Boot Camp listeners can help advance Lyme disease research.

Dr. Horn explains that participation opportunities depend on the specific study and the patient's circumstances.

Donate Blood or Urine

Eligible participants in certain geographic areas, including the San Francisco Bay Area, may be able to donate biological samples through participating clinical sites.

The process typically involves informed consent, health-history questions, and sample collection.

Consider Tissue Donation

Some individuals may be eligible to contribute tissue collected during specific surgical procedures.

Dr. Horn also discusses the possibility of registering for postmortem tissue donation.

These contributions can support research into the effects of tick-borne pathogens on different organs and tissues.

Support Patient-Powered Research

Rich also highlights MyLymeData, a patient-powered research initiative that allows people affected by Lyme disease to share information about their experiences.

These opportunities provide ways for patients to contribute to research, even when their own health circumstances limit other forms of advocacy.

For current eligibility requirements and donation information, visit the Lyme Disease Biobank or contact the Bay Area Lyme Foundation.

When Will Better Lyme Disease Tests Become Available?

Rich asks Dr. Horn when patients might begin seeing significant improvements in Lyme disease diagnostics.

Speaking in 2025, she expresses optimism that better tests could begin emerging within approximately two years, with additional progress over the following five years.

She credits the availability of well-characterized samples, collaboration among research groups, and growing interest in new diagnostic technologies.

These are research expectations rather than guaranteed development or approval timelines.

Still, her message is encouraging.

The tools needed to improve Lyme disease testing are being developed, and patients are helping make that work possible.

Key Takeaways

• Current Lyme disease tests have important limitations. Antibody tests may miss infections before a detectable immune response develops.
• Direct detection remains a major research priority. Scientists need better methods for identifying Borrelia itself.
• Different FDA-cleared tests may produce different results. The choice of assay can influence detection.
• Multiplex antibody testing shows promise. Evaluating multiple Borrelia antigens may improve diagnostic performance.
• Early treatment can affect antibody development. Some treated patients may not develop the expected later IgG response.
• Persistent symptoms require more research. Dr. Horn discusses findings showing that approximately one in five early-treated patients still reported symptoms after three months.
• Patient donations are advancing science. Blood, urine, and tissue samples help researchers investigate diagnostic and biological questions.
• The Lyme Disease Biobank supports collaboration. More than 115 research projects had used its resources at the time of the interview.
• Patients can help drive progress. Voluntary research participation and advocacy can contribute to the development of better diagnostic tools.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Liz Horn, PhD, Principal Investigator of the Lyme Disease Biobank.

Rich and Dr. Horn discuss the limitations of Lyme disease testing, new diagnostic technologies, FDA-cleared assays, persistent symptoms after treatment, and how donated biological samples are helping advance scientific research.

They also explore opportunities for patients to contribute to studies that may improve the future of Lyme disease diagnosis and care.

Discover additional interviews with researchers and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

Why do so many women with chronic Lyme disease struggle to get answers—and could stress, hormones, immune function, and medical gaslighting help explain their experiences?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Anne VanCouvering, ND, a Vermont-based naturopathic doctor who treats patients with Lyme disease, tick-borne infections, mold-related concerns, and complex chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why women are so heavily represented in the chronic Lyme disease community, how prolonged stress may affect immune function, and why patients with multisystem symptoms are frequently dismissed by healthcare professionals.

Dr. VanCouvering also shares her personal journey into Lyme disease medicine, including her son's seven-year struggle with unexplained symptoms, her family's experiences with tick exposure on Long Island, and how ILADS helped shape her clinical approach.

Their discussion raises important questions about Bartonella, Babesia, neuroinflammation, autism-like symptoms, PANS/PANDAS, environmental exposures, nervous system regulation, and the limitations of conventional medical care.

Throughout the interview, Dr. VanCouvering emphasizes a principle that every patient deserves to experience: The goal isn't for a doctor to be right. The goal is to help the patient get well.

Meet Dr. Anne VanCouvering, ND

Dr. Anne VanCouvering is a naturopathic doctor based in central Vermont who provides telemedicine services to patients in Vermont, New Hampshire, and Massachusetts.

Her clinical interests include Lyme disease, tick-borne infections, mold-related illness, autism, PANS/PANDAS, and complex chronic health conditions.

Before attending naturopathic medical school, she operated a massage therapy practice in the Hamptons on Long Island.

Her interest in medicine developed partly from her desire to understand her son's health challenges.

She began attending ILADS conferences in 2014, seeking additional education about Lyme disease and associated infections.

Dr. VanCouvering describes witnessing the growth of integrative and naturopathic approaches within the ILADS community, including increasing discussions of herbal medicine and supportive therapies.

A Mother's Search for Answers: Seven Years of Unrecognized Lyme Disease

Dr. VanCouvering's journey into Lyme disease medicine began with her son.

During his teenage years, he experienced a collection of symptoms that initially appeared unrelated:

• Excessive sleeping and debilitating fatigue
• Anxiety and behavioral changes
• Knee pain
• Persistent headaches
• Cognitive difficulties and trouble completing sentences
• Purple stretch-mark-like skin changes that she later associated with Bartonella

She initially explored autism and other possible explanations for his symptoms.

Despite consulting multiple healthcare professionals, she struggled to obtain a diagnosis that explained his overall condition.

Eventually, a discussion with another physician about purple striae prompted her to reconsider his symptoms.

She began investigating tick-borne infections and concluded that Lyme disease might be contributing to his illness.

By that point, approximately seven years had passed since his symptoms began.

His condition eventually became so severe that, while attending college in Oregon, he reportedly spent three months largely confined to bed.

Dr. VanCouvering describes traveling to California for additional medical support at Gordon Medical Associates, although the financial burden made continued care difficult.

She credits a combination of medical care and lifestyle changes with helping her son improve.

Her experience highlights how difficult it can be for families to navigate complex symptoms, particularly when multiple body systems appear to be affected.

Clinical context: Purple striae are not diagnostic of Bartonella infection, and symptoms such as fatigue, anxiety, and cognitive changes have many possible causes. Lyme disease requires appropriate clinical evaluation.

From Long Island to Vermont: A Family History of Tick Exposure

Dr. VanCouvering discusses her family's extensive history on Long Island, including time spent on Shelter Island.

Her husband served as a Scoutmaster and experienced frequent tick bites over many years.

She describes how repeated exposure shaped her awareness of Lyme disease and the practical challenges of tick prevention.

Rich, also from Long Island, connects with her over the region's history of tick-borne disease research.

Their conversation highlights how Lyme disease can affect families with extensive outdoor exposure, including hikers, gardeners, hunters, park employees, and other people who spend time in wooded or grassy environments.

Repeated tick exposure increases opportunities for infection, but it does not mean everyone living in an endemic area has Lyme disease or carries Borrelia.

For practical prevention and next steps after a tick bite, explore Tick Boot Camp's Tick Bite Blueprint.

Lyme Disease, Bartonella, Babesia, and the Total Burden of Illness

Dr. VanCouvering explains that she approaches complicated patient cases by considering more than one possible contributing factor.

Her evaluations may include:

• Lyme disease and other tick-borne infections
• Bartonella and Babesia
• Environmental mold exposure
• Possible heavy metal exposure
• Chronic viral illnesses
• Stress and nervous system function
• Individual medical history and genetic factors

She uses a memorable analogy involving The Godfather and his associates.

In her metaphor, addressing one major infection may not resolve a patient's symptoms if other medical problems remain unrecognized.

She believes clinicians should evaluate contributing factors methodically rather than assuming that every symptom has a single explanation.

However, the presence of multiple symptoms does not establish multiple infections, mold toxicity, or impaired detoxification. Each suspected condition requires appropriate evaluation, and not every proposed testing or treatment approach is clinically validated.

Chronic Stress, Fight-or-Flight, and the Immune System

One of the interview's central discussions focuses on the relationship between stress and chronic illness.

Rich asks whether prolonged stress could affect the immune system in ways that influence a person's response to tick-borne infections.

Dr. VanCouvering explains the body's stress response using the familiar example of escaping a tiger.

During a perceived threat, the sympathetic nervous system prepares the body for immediate action.

Processes such as digestion and other routine functions may temporarily change as the body prioritizes responding to danger.

She believes prolonged stress may complicate recovery for some patients with chronic illness.

The conversation also explores the balance between sympathetic and parasympathetic nervous system activity.

Scientific context: Chronic stress can influence immune signaling, sleep, pain perception, and overall health. However, stress does not simply switch off the immune system, and evidence does not establish that psychological stress causes persistent Borrelia infection or Lyme disease relapse.

For a related discussion, listen to Tick Boot Camp's interview with Cathleen King about nervous system regulation and Primal Trust.

Why Are More Women Represented in the Chronic Lyme Disease Community?

Rich shares an observation from hundreds of Tick Boot Camp interviews: women make up a substantial majority of the patients and practitioners featured on the podcast.

He asks Dr. VanCouvering whether biological differences, stress, or social expectations could help explain that pattern.

She identifies several possible contributors.

Women May Carry More Caregiving and Household Responsibilities

Dr. VanCouvering discusses the additional responsibilities many women manage outside paid employment.

These may include raising children, caring for aging relatives, and organizing household responsibilities.

She believes these demands can contribute to prolonged stress and affect a person's overall well-being.

Rich also raises the possibility that social media may increase stress for some women.

Dr. VanCouvering cautions that the issue is more complicated than social media alone.

Men May Be Less Likely to Seek Medical Care

Dr. VanCouvering notes that social expectations may discourage some men from discussing symptoms or seeking help.

She treats men who spend significant time outdoors, including gardeners, hunters, and people working in wooded environments.

She estimates that her own practice serves approximately 60% women and 40% men.

This observation raises an important distinction: The demographics of patients seeking treatment do not necessarily reflect the actual distribution of Lyme disease infections.

Hormonal Changes and Medical Dismissal

Dr. VanCouvering also discusses hormonal fluctuations and their possible effects on symptoms.

She believes women may face additional challenges when reporting fatigue, pain, or other difficult-to-explain health problems.

Both Rich and Dr. VanCouvering express concern that women's physical symptoms are sometimes attributed to anxiety or depression without adequate investigation.

The discussion raises questions about how medical research, gender bias, and differences in healthcare utilization influence patient experiences.

Importantly, the interview does not establish that women are biologically more likely than men to develop persistent symptoms after Lyme disease.

Medical Gaslighting: When Patients Are Told It's All in Their Heads

Dr. VanCouvering describes patients arriving at her practice in tears after repeatedly being told that their symptoms are psychological.

She believes medical dismissal can result from limited education, insufficient appointment time, or clinicians' reluctance to acknowledge uncertainty.

Rich asks whether the problem reflects individual arrogance or broader failures within the healthcare system.

They discuss how insurance reimbursement, short appointments, demanding schedules, and fragmented specialty care can make it difficult for healthcare professionals to thoroughly evaluate complicated cases.

Dr. VanCouvering believes that when clinicians cannot explain a patient's symptoms, they should be willing to acknowledge uncertainty and help the patient find appropriate additional care.

She summarizes her philosophy with a memorable statement:

“It's not about me being right. It's about getting it right.”

Her message is that healthcare should prioritize patient outcomes over professional ego.

Why Multisystemic Illness Requires a Broader Perspective

Dr. VanCouvering argues that complex chronic illness can be difficult to understand when individual symptoms are evaluated separately.

A patient may experience neurological, gastrointestinal, musculoskeletal, cardiovascular, and psychological symptoms simultaneously.

Different specialists may focus on individual organs or systems without developing a coordinated understanding of the overall clinical picture.

She believes longer appointments, careful listening, and collaboration between practitioners can help identify overlooked medical concerns.

Rich agrees that the medical system needs better ways to recognize and investigate illnesses involving multiple body systems.

Their discussion emphasizes the importance of comprehensive medical histories, appropriate testing, and collaboration rather than assuming every unexplained symptom has the same cause.

Autism, PANS/PANDAS, and Neuroinflammation

Dr. VanCouvering explains that her original interest in naturopathic medicine involved understanding her son's developmental and behavioral symptoms.

She continues to see some patients with autism and PANS/PANDAS in addition to those with tick-borne illnesses.

The interview briefly explores the possibility that inflammatory and infectious conditions can sometimes produce neurological or behavioral symptoms.

PANS and PANDAS are clinical syndromes associated with the abrupt onset of certain neuropsychiatric symptoms, although their diagnostic evaluation and proposed mechanisms remain subjects of ongoing research.

Autism is a neurodevelopmental condition and should not be equated with Lyme disease or presumed to be caused by tick-borne infections.

For a related conversation, explore Tick Boot Camp's interview with Dr. Somer DelSignore about pediatric Lyme disease, autism, PANS/PANDAS, and neuroinflammation.

How ILADS Changed Dr. VanCouvering's Medical Career

Dr. VanCouvering first attended ILADS in 2014, when she was still learning how to evaluate Lyme disease and associated infections.

She remembers that discussions of herbal and integrative approaches initially occupied relatively small conference spaces.

By the following year, attendance at those sessions had grown substantially.

She credits ILADS with introducing her to clinicians and educational resources that influenced her approach to complex patient cases.

Rich and Dr. VanCouvering also discuss how continuing education helps practitioners remain open to new ideas.

Their conversation illustrates why clinicians need to evaluate emerging research critically while continuing to provide compassionate, evidence-informed care.

Key Takeaways

• Lyme disease can affect multiple body systems. Dr. VanCouvering's son's experience motivated her to pursue additional medical education.
• Delayed diagnosis can profoundly affect families. Her son experienced years of symptoms before she began investigating Lyme disease.
• Other conditions may complicate recovery. She discusses co-infections, environmental exposures, and stress as factors she considers in selected patients.
• Stress and immune function are connected. The relationship is complex and does not establish that stress causes persistent Lyme infection.
• Women's experiences deserve greater attention. The interview explores caregiving demands, hormonal changes, healthcare utilization, and medical dismissal.
• Men also experience Lyme disease and diagnostic challenges. Social expectations may affect when people seek care.
• Medical gaslighting can damage trust. Patients deserve clinicians who listen, investigate, and acknowledge uncertainty.
• Complex illness requires collaboration. Coordinated care can be especially important when symptoms involve multiple systems.
• Education remains essential. Dr. VanCouvering credits ILADS with helping expand her knowledge of tick-borne diseases.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Rich and Dr. Anne VanCouvering discussing Lyme disease, chronic stress, gender differences, medical gaslighting, and the challenges of treating complex chronic illness.

The interview also explores her son's health journey, the history of tick exposure on Long Island, and her evolving approach to patient care.

Rich concludes by inviting Dr. VanCouvering to return for a longer discussion about how Lyme disease should be defined and understood.

Discover more physician, researcher, and patient conversations through Tick Boot Camp's LIVE from ILADS podcast series.

Read transcript

What happens when an Emmy-winning documentary filmmaker turns his camera toward one of the fastest-changing tick problems in the Northeast?

In this episode of the Tick Boot Camp Podcast, Matt Sabatello, Tick Boot Camp Co-Founder, sits down in person with Emmy-winning filmmaker Reece Robinson, director of the upcoming documentary Ticking Point, to explore the rise of lone star ticks, Alpha-Gal Syndrome, Lyme disease, and what communities can do to fight back.

For Reece, the story is personal. His older brother experienced severe chronic Lyme disease, including Bell’s palsy, cognitive problems, significant pain, intravenous antibiotics, and a period of being bedridden. Years later, Reece watched another tick-related threat begin transforming life on Martha’s Vineyard: the rapid expansion of lone star ticks and growing concern about Alpha-Gal Syndrome.

Now he is documenting it.

From Chronic Lyme Disease to Ticking Point

Reece shares how watching his brother struggle with Lyme disease left a lasting impression on him long before he became a professional filmmaker.

His career eventually led him into character-driven documentary storytelling and work on National Geographic’s The First Wave, which documented healthcare workers and patients during the earliest months of the COVID-19 pandemic.

During the summer of 2025, Reece noticed something happening on Martha’s Vineyard that he could no longer ignore. Conversations about ticks and Alpha-Gal Syndrome seemed to be everywhere.

That experience became the foundation for Ticking Point, a feature-length, solutions-focused documentary examining how communities are responding to expanding tick populations and Alpha-Gal Syndrome.

What Is Ticking Point?

Rather than creating what Reece describes as a “doom and gloom” documentary, Ticking Point focuses on people trying to solve the problem.

The film follows residents, scientists, hunters, public health professionals, and advocates as communities confront questions surrounding:

• Lone star tick expansion
• Alpha-Gal Syndrome
• Deer populations and tick ecology
• Community-wide tick management
• Tick-bite prevention
• Emerging scientific research
• Public health policy
• Ecological interventions
• The challenges of balancing competing community priorities

Martha’s Vineyard provides a fascinating case study because it combines a significant tick problem with an engaged year-round community actively searching for solutions.

The question behind the film is much bigger than one island: If Martha’s Vineyard can find ways to meaningfully reduce its tick problem, could those lessons help other communities?

Alpha-Gal Syndrome and the Lone Star Tick

Much of the conversation focuses on growing concern surrounding Alpha-Gal Syndrome (AGS), an allergy associated in the United States primarily with bites from lone star ticks.

Reece discusses stories he has encountered while making the documentary, including people whose reactions extend far beyond simply avoiding steak or hamburgers. For some patients, mammalian-derived ingredients, dairy products, medications containing certain animal-derived ingredients, or even exposure to cooking fumes can become concerns.

The unpredictable nature of Alpha-Gal Syndrome is one reason Reece believes more research is urgently needed.

Two people can experience tick exposure and have dramatically different outcomes—and researchers are still working to understand why.

The Rise of the Lone Star Tick

Reece describes the lone star tick as a particularly formidable challenge.

Unlike the more passive questing behavior people often associate with blacklegged ticks, lone star ticks can actively move toward potential hosts. The conversation explores their behavior, expanding presence across parts of the Northeast, and what that expansion could mean for communities already dealing with Lyme disease and other tick-borne illnesses.

Alpha-Gal Syndrome is also only part of the discussion.

Matt, Rich, and Reece discuss other conditions associated with lone star ticks, including ehrlichiosis, tularemia, and Southern Tick-Associated Rash Illness (STARI).

Filming a Long Island Tick Drag with Monica Cipriani

This interview was recorded at the end of an extraordinary day in the field.

Before sitting down for the podcast, Reece joined Tick Boot Camp and researcher Monica Cipriani on Long Island to film tick-dragging footage for Ticking Point.

The results demonstrated just how significant local lone star tick populations can become. The team encountered large numbers of lone star ticks, including dense clusters of larvae commonly called “tick bombs.”

Reece filmed the fieldwork and plans to use footage from the day in his documentary.

See what we discovered during our Long Island tick drag with Monica Cipriani and Reece Robinson.

Searching for Solutions to the Tick Problem

One of the most important themes of Ticking Point is that there probably won't be one solution to the growing tick problem.

Reece is documenting approaches that address the issue from multiple directions, including:

• Deer population management
• Habitat and landscape management
• Tick-bite prevention
• Scientific research
• Public education
• Community-based interventions
• Research into the human immune response
• Potential future technologies designed to interrupt tick-borne disease transmission

The conversation also explores the social and political challenges surrounding interventions such as deer management and controlled burns.

Solutions that may appear straightforward scientifically can become much more complicated when implemented across real communities.

Can We Prevent Tick-Borne Disease Before the Bite Leads to Illness?

Reece also discusses scientists exploring entirely new approaches to tick-borne disease prevention.

That includes research involving genetically modified mice designed to interrupt the transmission cycle of Lyme disease, as well as investigations into immune responses that could someday help researchers better understand how the body responds to tick feeding.

These ideas remain areas of research rather than immediate solutions, but they illustrate a broader question driving Ticking Point:

Can we change the environment, ecology, or transmission cycle in ways that prevent people from becoming sick in the first place?

A Filmmaker With a Personal Connection to Lyme Disease

Although Reece does not identify as a tick-borne disease patient himself, his brother's experience gives him a perspective familiar to many families in the Lyme community.

He remembers his brother experiencing Bell’s palsy, severe pain, memory problems, prolonged illness, IV antibiotics, and numerous approaches to treatment.

That experience now intersects with Reece’s career as a documentary filmmaker.

His goal with Ticking Point isn't simply to show how frightening ticks can be. It is to document people trying to understand the problem, challenge it, and build solutions.

Support and Follow Ticking Point

Ticking Point is currently an independent documentary project, and Reece is looking for people affected by Alpha-Gal Syndrome, researchers, advocates, communities working on tick-control initiatives, and others with meaningful stories to share.

The project is also accepting tax-deductible financial support through its fiscal sponsor.

Learn more about Ticking Point, watch the documentary teaser, join the mailing list, or contact Reece Robinson.https://circuitarts.org/fiscalsponsorship

Learn More About Reece Robinson

Reece Robinson is an Emmy-winning documentary filmmaker whose work focuses on human stories and social issues. His credits include work as a field producer on National Geographic’s The First Wave, documenting the earliest months of the COVID-19 pandemic inside a New York hospital.

Learn more about Reece Robinson and explore his filmmaking work.

More From Tick Boot Camp

Want to continue learning about Lyme disease, Alpha-Gal Syndrome, ticks, and the people working to solve these complex problems?

Explore more Tick Boot Camp Podcast interviews with patients, doctors, researchers, and advocates.

If you've recently found a tick or experienced a tick bite, start with the Tick Boot Camp Tick Bite Blueprint.

And don't miss our behind-the-scenes look at the fieldwork featured in Reece's documentary: Long Island Tick Drag: Tick Bombs, Lone Star Ticks & an Invasive Tick.

Could Lyme disease and other tick-borne infections be overlooked contributors to arterial inflammation, heart disease, and stroke risk?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. H. Thomas “Tom” Hight, MD, a board-certified internal medicine physician and clinical lipidologist specializing in cardiovascular disease prevention and arterial health.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores a provocative question: Could certain infections contribute to cardiovascular inflammation in ways that conventional heart disease evaluations don't routinely investigate?

Dr. Hight shares observations from his Atlanta-based practice, where he monitors arterial health using serial ultrasound examinations and cardiovascular biomarkers.

He describes patients whose arterial measurements worsened despite improvements in traditional risk factors, prompting him to investigate additional possible contributors, including chronic viral infections and tick-borne illnesses.

The discussion covers Lyme disease, Bartonella, endothelial inflammation, atherosclerosis, plaque regression, heart attacks, strokes, Lyme carditis, and emerging research into vascular health and dementia.

Dr. Hight also explains why he believes cardiovascular prevention should look beyond cholesterol and blood pressure while emphasizing the importance of addressing all relevant risk factors.

His observations raise important research questions, although a direct causal relationship between persistent tick-borne infection and coronary atherosclerosis has not been established.

Meet Dr. Tom Hight, MD

Dr. H. Thomas Hight, MD is a physician specializing in cardiovascular risk reduction, arterial disease, and clinical lipidology.

Based in Atlanta, Georgia, he has spent years working with patients who have experienced heart attacks, strokes, and other serious cardiovascular events.

Dr. Hight developed an ultrasound-based approach to monitoring changes in arterial health over time.

His practice, CardioSound, focuses on identifying and addressing factors that may contribute to cardiovascular disease progression.

His growing interest in Lyme disease began after observing unexpected changes in patients whose cardiovascular risk factors appeared to be improving.

He attended an ILADS conference in Boston to learn more about tick-borne illnesses and their possible cardiovascular implications.

This interview follows his earlier appearance on Tick Boot Camp, where he first discussed the potential relationship between Lyme disease and cardiovascular risk.

Why Dr. Hight Started Investigating Lyme Disease in Heart Patients

Dr. Hight explains that his practice regularly monitors patients who have already experienced cardiovascular events.

These patients face increased risks of subsequent heart attacks, strokes, and other complications.

His approach includes repeat arterial ultrasound studies approximately every three to four months, alongside laboratory testing and comprehensive risk-factor management.

He looks for evidence that arterial disease is stabilizing or improving.

However, following the COVID-19 pandemic, he noticed an unexpected pattern.

Some patients who had previously shown improvements began experiencing worsening arterial findings.

This prompted him to reconsider whether additional inflammatory or infectious factors might be contributing to their cardiovascular risk.

He began evaluating selected patients for chronic viral illnesses and tick-borne infections.

Dr. Hight reports that some patients subsequently showed improvements in inflammatory biomarkers and arterial measurements during treatment.

These observations motivated his continued interest in the relationship between infectious disease and cardiovascular health.

Lyme Disease, Bartonella, and Endothelial Inflammation

A central theme of the conversation is the endothelium, the thin layer of cells lining the inside of blood vessels.

Endothelial cells play important roles in vascular function, blood flow, inflammation, and clotting.

Dr. Hight discusses how certain infections may affect vascular tissues and potentially contribute to inflammatory processes.

He is particularly interested in Borrelia, the bacteria responsible for Lyme disease, and Bartonella species.

Both infections have recognized cardiovascular manifestations under certain circumstances, although their mechanisms and clinical presentations differ.

Dr. Hight believes further research is needed to determine whether some tick-borne infections contribute to the progression of atherosclerosis.

Does Treating Infections Improve Arterial Health?

Dr. Hight reports observing reductions in inflammatory biomarkers followed by improvements in arterial ultrasound findings among some patients receiving treatment.

He emphasizes that infection management is only one part of his cardiovascular approach.

His patients also receive attention to cholesterol, blood pressure, metabolic health, and other established cardiovascular risk factors.

Because multiple interventions may occur together, these clinical observations cannot determine which intervention caused the improvements.

Dr. Hight acknowledges that more research is necessary to establish cause-and-effect relationships.

Understanding Atherosclerosis and Plaque Regression

Atherosclerosis develops when plaque accumulates within artery walls.

Plaque contains lipids, inflammatory cells, connective tissue, and other materials.

Over time, atherosclerosis can restrict blood flow or contribute to events such as heart attacks and strokes.

Dr. Hight explains that he uses repeated ultrasound studies to evaluate changes in arterial disease.

He discusses plaque regression, which refers to a reduction in atherosclerotic plaque burden.

He believes monitoring arterial changes over time provides valuable information about whether a patient's cardiovascular risk-management plan is working.

Although plaque regression can occur with effective treatment, interpreting ultrasound changes requires appropriate measurement techniques and clinical context.

Dr. Hight also describes strong survival outcomes in his own practice. These are self-reported clinical observations, not independently verified results from a controlled study.

Beyond Cholesterol: More Than 20 Modifiable Heart Disease Risk Factors

Dr. Hight argues that cardiovascular medicine should consider a wider range of potentially modifiable risk factors.

He explains that many routine discussions focus primarily on:

• Cholesterol
• Blood pressure
• Diabetes
• Smoking
• Obesity

These are important, well-established cardiovascular risk factors.

However, Dr. Hight believes clinicians should also investigate other contributors when patients experience unexpected disease progression.

He describes evaluating more than 20 modifiable factors in his practice.

His broader approach includes inflammatory markers and, in selected circumstances, possible infectious contributors.

The conversation emphasizes that patients who have experienced a heart attack or stroke benefit from comprehensive secondary prevention, including evidence-based medication, lifestyle management, and appropriate specialist follow-up.

Cardiovascular Biomarkers: Troponin T, NT-proBNP, and IL-6

Dr. Hight discusses several laboratory markers that helped prompt his investigation into additional inflammatory processes.

These include:

High-sensitivity troponin T: A biomarker associated with heart muscle injury. Interpretation depends on the clinical situation and the degree and pattern of elevation.

NT-proBNP: A biomarker commonly used in the evaluation of heart failure and cardiac stress.

Interleukin-6 (IL-6): An inflammatory signaling molecule involved in immune responses and multiple disease processes.

Dr. Hight reports seeing changes in certain markers alongside changes in arterial health.

He believes these measurements may provide clues when investigating patients whose cardiovascular disease is not improving as expected.

However, these biomarkers are not specific tests for Lyme disease, Bartonella infection, or infection-related atherosclerosis.

Lyme Carditis vs. Coronary Artery Disease

Rich and Dr. Hight discuss the distinction between established cardiac complications of Lyme disease and the broader possibility of infection-associated atherosclerosis.

Lyme carditis is a recognized manifestation of Lyme disease that can affect the heart's electrical conduction system, sometimes causing atrioventricular block.

Symptoms may include palpitations, dizziness, fainting, shortness of breath, and chest discomfort.

Coronary artery disease is different.

It generally involves atherosclerotic plaque buildup in arteries supplying the heart muscle.

Dr. Hight believes more research should investigate whether tick-borne infections contribute to coronary artery disease in selected patients.

However, Lyme carditis does not establish that Lyme disease is a common cause of atherosclerosis.

For a related conversation, listen to Tick Boot Camp's interview with Dr. Medeya Tsnobiladze about the neurological and cardiovascular impacts of Lyme disease.

Should Heart Attack Patients Be Tested for Lyme Disease?

Rich asks whether tick-borne disease testing should become part of routine cardiovascular evaluations.

Dr. Hight believes infectious contributors deserve more consideration, particularly when a patient's clinical history raises relevant questions.

He acknowledges that evidence establishing the relationship between Lyme disease and atherosclerosis remains incomplete.

Currently, routine Lyme disease testing for every heart attack patient is not an established standard of care.

Testing decisions should consider symptoms, possible tick exposure, geographic risk, and the likelihood that results will meaningfully guide medical management.

The discussion also addresses the financial burden of specialty testing and the importance of determining whether additional tests offer meaningful clinical value.

Do Patients Always Need Coronary Stents?

Dr. Hight discusses the role of coronary stents in treating certain forms of heart disease.

He acknowledges that stents can be lifesaving when appropriately used.

However, he questions whether some patients with stable coronary artery disease undergo procedures that may not improve their long-term outcomes.

He references two major clinical trials:

COURAGE Trial: Investigated optimal medical therapy with or without percutaneous coronary intervention in selected patients with stable coronary artery disease.

ISCHEMIA Trial: Compared an initial invasive strategy with a conservative strategy in patients with stable ischemic heart disease.

These studies helped clarify the benefits and limitations of invasive procedures in particular patient populations.

The findings do not mean stents are unnecessary for all patients without symptoms or that medical treatment can replace urgent intervention during a heart attack.

Treatment decisions depend on the patient's clinical condition, coronary anatomy, symptoms, and overall risk.

Could Vascular Inflammation Contribute to Dementia?

Near the end of the interview, Dr. Hight discusses his interest in the relationship between large-vessel disease, small-vessel disease, and cognitive health.

He explains that vascular problems can affect both the heart and brain.

Large-vessel disease can contribute to heart attacks and strokes, while cerebral small-vessel disease can contribute to cognitive impairment and vascular dementia.

Dr. Hight hopes future research will identify better biomarkers and interventions that help clinicians recognize and manage vascular disease earlier.

He raises the possibility that improved understanding of inflammatory mechanisms could benefit both cardiovascular and neurological health.

This is a research goal, not evidence that treating Lyme disease reverses dementia.

The Future: Better Biomarkers, Research, and Prevention

Dr. Hight hopes to continue studying the potential relationship between tick-borne infections and cardiovascular disease.

He expresses interest in presenting his clinical observations at a future ILADS conference.

His broader goal is to develop better tools that help healthcare professionals identify risk factors, monitor arterial health, and intervene before serious cardiovascular events occur.

Rich encourages him to share his findings with the wider medical community.

Both agree that research, collaboration, and education are essential for answering questions about the possible cardiovascular consequences of tick-borne infections.

Key Takeaways

• Lyme disease has recognized cardiac complications. Lyme carditis can affect the heart's electrical conduction system.
• The relationship between Lyme disease and atherosclerosis remains uncertain. Dr. Hight's clinical observations raise questions that require controlled research.
• Endothelial health matters. The inner lining of blood vessels plays a central role in vascular function and inflammation.
• Heart disease prevention involves multiple risk factors. Cholesterol, blood pressure, diabetes, smoking, and other established risks remain essential treatment targets.
• Serial arterial imaging may help monitor selected patients. Dr. Hight uses ultrasound to evaluate changes in arterial disease over time.
• Biomarkers can provide important clinical information. Troponin T, NT-proBNP, and IL-6 have different uses and limitations.
• Coronary stents have an important but specific role. Their benefits depend on the clinical situation.
• Vascular health and cognitive health are connected. Research into cerebral small-vessel disease may improve understanding of vascular dementia.
• Further research is needed. Dr. Hight hopes to investigate whether selected tick-borne infections contribute to cardiovascular disease progression.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this interview reunites Rich with Dr. Tom Hight for an update on his clinical observations and cardiovascular research interests.

The conversation explores Lyme disease, Bartonella, arterial inflammation, atherosclerosis, heart attack prevention, plaque regression, and the possibility of improved vascular health through comprehensive risk-factor management.

Explore additional interviews with healthcare professionals and researchers through Tick Boot Camp's LIVE from ILADS podcast series.

For seven years, Anne Desjardins struggled with unexplained symptoms, medical dismissal, depression, and thoughts of suicide before finally receiving a Lyme disease diagnosis. Today, she's helping others find the hope she once desperately needed.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Anne Desjardins, a Pennsylvania Lyme disease advocate, Ayurvedic practitioner, support group leader, and host of The Silver Lyming podcast.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores delayed Lyme disease diagnosis, neurological symptoms, medical gaslighting, mental health, integrative healing, financial hardship, and the power of sharing patient recovery stories.

Anne opens up about losing her independence, struggling to remember people's names, and reaching a point where she no longer wanted to live. She also shares how her diagnosis, treatment, lifestyle changes, and supportive community helped her rebuild her life and discover a new purpose.

Her story is a reminder that a difficult chapter doesn't have to be the final chapter—and that hearing someone else's recovery story can help make hope feel possible again.

Seven Years of Symptoms Before a Lyme Disease Diagnosis

Anne believes she contracted Lyme disease in Pennsylvania, one of the states most heavily affected by tick-borne illness.

She began noticing symptoms around age 30, but her initial attempts to find medical answers were unsuccessful.

Healthcare professionals repeatedly attributed her symptoms to stress, depression, or being overly emotional.

Anne remembers trying to explain that she was becoming depressed because she felt physically ill every day—not the other way around.

Over time, her symptoms became increasingly disruptive:

• Hearing loss in her left ear
• Heart palpitations and episodes of fluttering
• Severe dizziness, particularly when turning her head
• Memory loss, confusion, and difficulty concentrating
• Speech problems, including stuttering
• Overwhelming fatigue and reduced ability to perform daily activities
• Depression, social withdrawal, and suicidal thoughts

She eventually became concerned that she might have a brain tumor.

After years of unsuccessful medical appointments, a physician finally suspected Lyme disease and ordered testing.

When the result came back positive, Anne felt an overwhelming sense of relief.

She finally had a diagnosis that could help guide her next steps.

Medical Gaslighting, Depression, and the Mental Health Impact of Chronic Illness

Anne describes how repeated dismissal affected her confidence, relationships, and emotional well-being.

When doctors told her nothing was wrong, she began questioning herself.

She became embarrassed by her cognitive symptoms and increasingly avoided social situations.

At one event, she introduced herself to the same person twice within minutes because she couldn't remember their first interaction.

Daily activities such as showering, doing laundry, cleaning, or visiting friends became difficult.

Anne also discusses using alcohol to cope with years of physical and emotional suffering.

Eventually, she experienced suicidal thoughts and wondered whether she would ever regain her life.

Rich asks whether those thoughts were driven by the illness itself, the prolonged diagnostic journey, or the hopelessness that developed along the way.

Anne believes multiple factors contributed. She describes feeling disconnected from herself and eventually learning to recognize that distressing thoughts did not define her identity.

Her experience highlights why mental health support and compassionate medical care are important for people living with disabling chronic symptoms.

If you're struggling with thoughts of suicide, you deserve immediate support. In the United States, call or text 988 to reach the Suicide & Crisis Lifeline.

For additional conversations about the psychological impact of Lyme disease, explore Tick Boot Camp's mental health and Lyme disease interview with therapist Christina Kantzavelos.

Lyme Disease Treatment and Anne's Personal Healing Journey

After receiving her diagnosis, Anne began antibiotic treatment through her family physician.

She initially experienced significant improvement, describing the experience as finally feeling human again.

However, some neurological and cognitive symptoms returned during treatment.

She received additional antibiotics and eventually began working with a clinician experienced in treating Lyme disease.

Anne describes approximately two and a half additional years of antibiotic treatment, alongside herbal supplements and other supportive approaches.

One influential resource was Unlocking Lyme by Dr. Bill Rawls, MD.

Unable to comfortably read at the time because of her cognitive symptoms, Anne listened to the audiobook and found encouragement in Dr. Rawls' recovery story.

She gradually incorporated additional changes into her daily routine, including:

• Dietary adjustments and avoiding foods she personally felt worsened her symptoms
• Eliminating alcohol and caffeine
• Herbal approaches discussed with her healthcare provider
• Hot yoga and regular movement
• Mindfulness, spirituality, and self-reflection
• Exploring Ayurveda and holistic wellness practices

Anne credits these combined changes with helping her regain function and improve her quality of life.

She emphasizes that her transformation happened gradually over several years.

Her experiences reflect an individualized recovery journey rather than a treatment protocol proven to work for everyone. In particular, hot yoga, restrictive diets, and herbal products have not been established as cures for Lyme disease, and prolonged heat exposure can pose risks for some patients.

Discovering Ayurveda and a New Perspective on Health

As Anne's health improved, she became increasingly interested in Ayurveda, a traditional system of medicine originating in India.

She was drawn to its emphasis on daily routines, seasonal changes, nutrition, and the relationship between physical and emotional well-being.

Anne eventually pursued formal education to become an Ayurvedic practitioner.

She describes this experience as part of a broader personal transformation.

Rather than viewing recovery solely as the absence of symptoms, she began exploring how her experience had changed her priorities, relationships, and understanding of herself.

Anne acknowledges that she would never have chosen the suffering she experienced, but she now values the perspective and sense of purpose that emerged from it.

Turning Pain Into Purpose Through Pennsylvania Lyme Advocacy

As Anne regained her health, she became determined to help others avoid the isolation and confusion she had experienced.

She began leading a support group through the PA Lyme Resource Network, a volunteer-driven nonprofit focused on tick-borne disease education, prevention, patient support, and advocacy.

Anne is associated with the organization's Berks County region and has participated in community outreach and prevention education.

She also discusses becoming involved in Pennsylvania's public education efforts connected to Act 83, the state's Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act.

Her advocacy focuses on helping people recognize potential tick-borne disease symptoms, understand prevention strategies, and find supportive resources.

The Financial Burden of Lyme Disease

Anne speaks candidly about the financial challenges many patients face.

Her own treatment journey was expensive, and she describes hearing from people who struggle to afford testing, appointments, treatment, housing, or basic necessities.

She also raises concerns about insurance coverage and access to knowledgeable healthcare professionals.

Rich and Anne agree that patients should not have to face financial devastation while searching for answers.

For Pennsylvania residents seeking community support or practitioner referrals, the PA Lyme Resource Network's patient resources provide a starting point.

The Silver Lyming: A Podcast Dedicated to Hope and Healing

Anne eventually transformed her advocacy into a podcast called The Silver Lyming.

The title reflects her belief that meaningful growth, connection, and purpose can sometimes emerge from extremely difficult experiences.

At the time of this interview, Anne had recently released her 75th episode.

Her podcast features people who share their experiences with Lyme disease, tick-borne infections, chronic illness, and recovery.

Rather than focusing exclusively on symptoms and suffering, Anne seeks out stories that demonstrate different paths toward improved health and renewed purpose.

She believes hearing from people who have made progress can help listeners feel less isolated and more hopeful about their own futures.

Anne also discovered that podcasting benefits the guests themselves.

Several have told her that sharing their experiences publicly helped them process what they had endured.

For Anne, the podcast has become a place where people can speak openly, feel heard, and connect with others who understand.

Listen to The Silver Lyming with Anne Desjardins on Apple Podcasts.

Why Positive Lyme Disease Communities Matter

Rich and Anne discuss the importance of finding supportive spaces during chronic illness.

Both recognize that patients need opportunities to express frustration, grief, anger, and disappointment.

However, Anne explains that when she was seriously ill, she actively searched for stories of people who had improved.

She found those stories encouraging at a time when her future felt uncertain.

Rich emphasizes the value of multiple patient-led podcasts and advocacy platforms.

Different hosts bring different perspectives, ask different questions, and connect with different audiences.

He explains that Tick Boot Camp wants people to discover whatever resources best meet their needs, even when those resources come from another podcast.

Their conversation reinforces an important principle: Community should make people feel seen, supported, and empowered—not pressured to follow someone else's healing journey.

Being surrounded by illness-related discussions does not cause someone to remain sick, but choosing supportive communities can improve emotional well-being.

Finding Purpose After Chronic Illness

Near the end of the interview, Anne and Rich reflect on the relationship between suffering, identity, and purpose.

Anne explains that Lyme disease changed nearly every aspect of her life.

She lost years to debilitating symptoms, but she also developed new relationships, pursued education, became an advocate, and created a platform to support others.

One of her favorite questions to ask podcast guests is what positive change, if any, emerged from their experience with Lyme disease.

The answers vary.

Some people would never choose to experience the illness again. Others recognize meaningful personal growth alongside the suffering.

Anne believes both perspectives deserve space.

Her story demonstrates that finding purpose after illness does not require being grateful for the illness itself.

People can acknowledge profound losses while still discovering new possibilities for their future.

Key Takeaways

• Delayed Lyme disease diagnosis can have far-reaching consequences. Anne experienced years of neurological, cognitive, physical, and emotional symptoms before receiving answers.
• Medical dismissal can deepen isolation. Being told symptoms are caused by stress or depression may leave patients feeling unheard.
• Mental health deserves attention. Anne openly discusses suicidal thoughts, depression, and the emotional toll of prolonged illness.
• Recovery experiences vary. Her journey involved medical treatment, lifestyle changes, integrative practices, and community support.
• Financial barriers remain a major concern. Testing, treatment, and lost income can create serious hardship for patients and families.
• Patient advocacy creates connection. Anne's work with PA Lyme Resource Network helps people access education and support.
• Stories of improvement can inspire hope. Through The Silver Lyming, Anne helps others see that progress and meaningful life changes are possible.

About This LIVE from ILADS Interview

Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation introduces Anne Desjardins to the Tick Boot Camp community.

Rich and Anne discuss her seven-year diagnostic journey, Lyme disease treatment experiences, mental health struggles, Pennsylvania advocacy work, and the creation of The Silver Lyming podcast.

They also discuss collaborating on future long-form interviews to explore Anne's healing journey in greater depth.

Discover more patient, physician, researcher, and advocate conversations through Tick Boot Camp's LIVE from ILADS podcast series.

What happens when Lyme disease patients develop seizures, neurological symptoms, or serious complications—and the treatments they're receiving aren't working?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. Pamela Cipriano, DNP, APRN, a Connecticut nurse practitioner specializing in Lyme disease, tick-borne infections, and complex chronic illness.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores neurological Lyme disease, persistent seizures, suspected autoimmune encephalitis, Bartonella, Babesia, chronic urinary tract infections, and the challenges of caring for patients with complicated medical histories.

Dr. Cipriano shares two neurological case studies involving a 25-year-old man and a 14-year-old girl, discusses why some healthcare professionals hesitate to consider alternative diagnoses, and explains her efforts to improve Lyme disease education.

She also reflects on her personal journey into tick-borne disease medicine, her son's illness, her training with Dr. Richard Horowitz, and her candidacy for the ILADS Board of Directors.

Throughout the conversation, one message stands out: Patients with persistent, unexplained symptoms deserve continued investigation, compassionate care, and healthcare professionals willing to collaborate.

Meet Dr. Pamela Cipriano, DNP, APRN

Dr. Pamela Cipriano is a Connecticut-based advanced practice registered nurse with a Doctor of Nursing Practice degree.

Her professional background includes hospital medicine, critical care, pharmaceutical sales, and the evaluation of patients with Lyme disease and other complex health conditions.

She joined ILADS in 2018 and has attended nearly every annual conference since becoming a member.

Dr. Cipriano explains that ILADS conferences expose her to research and clinical discussions involving tick-borne pathogens, immune function, environmental exposures, and different treatment approaches.

She emphasizes her interest in integrative medicine and individualized patient care.

Her decision to enter the field was deeply personal.

After her son developed significant health problems, including chronic bladder symptoms, she began investigating Lyme disease and associated infections.

That experience ultimately helped shape her professional focus.

Neurological Lyme Disease: Two Patients With Persistent Seizures

One of the most important parts of the interview focuses on two patients featured in Dr. Cipriano's ILADS poster presentation.

The cases involve a 25-year-old man and a 14-year-old girl experiencing serious neurological complications.

Dr. Cipriano describes both patients as having neuroborreliosis-related concerns.

She explains that the patients developed seizures after beginning antibiotic treatment for Lyme disease.

The cases became particularly challenging because the patients continued experiencing neurological symptoms despite receiving anticonvulsant medications.

The 25-year-old patient, she reports, was taking three seizure medications and still experiencing seizures.

Dr. Cipriano began questioning whether an inflammatory or autoimmune neurological process might be contributing to his symptoms.

She discusses researching autoimmune encephalitis and sharing relevant literature with the patients' neurologists.

Could Autoimmune Encephalitis Be Overlooked?

Autoimmune encephalitis occurs when the immune system attacks components of the brain, potentially causing seizures, behavioral changes, memory problems, and other neurological symptoms.

Dr. Cipriano raises concerns that clinicians may sometimes focus on controlling seizures without sufficiently investigating their underlying causes.

She discusses corticosteroids as one possible treatment used for certain inflammatory neurological disorders.

However, persistent seizures do not automatically indicate autoimmune encephalitis or neurological Lyme disease. Both conditions require careful diagnostic evaluation, and corticosteroids are not appropriate for every seizure disorder or infection.

New seizures, prolonged seizures, or repeated seizures without recovery are medical emergencies. Patients should receive prompt neurological evaluation and appropriate treatment.

When Patients and Families Find Support Through Shared Experiences

Dr. Cipriano explains that the two neurological patients eventually met through their treatment schedules.

Although they had not previously known one another, their families began connecting during appointments.

They shared experiences, asked about each other's progress, and developed a sense of understanding.

For families navigating severe neurological illness, these connections can provide meaningful emotional support.

Their experiences also illustrate why community matters when patients face prolonged diagnostic uncertainty.

Knowing another family understands the challenges can reduce isolation, even when their medical situations are different.

Why Some Doctors Hesitate to Explore Unfamiliar Diagnoses

Rich asks Dr. Cipriano why healthcare professionals sometimes resist investigating conditions outside their established areas of expertise.

She believes medical training, professional expectations, and concerns about colleagues' opinions may influence clinical decisions.

Dr. Cipriano reflects on her previous work as a hospitalist and explains that she has always been willing to question established approaches when patients are not improving.

She believes clinicians should remain open to additional evidence and consultation when a treatment plan is unsuccessful.

Rich also discusses the professional and regulatory pressures faced by physicians who treat complicated tick-borne disease cases.

They reference the history of Dr. Joseph Burrascano, whose work in Lyme disease has been influential within the ILADS community.

Their discussion highlights the importance of balancing professional responsibility, patient safety, scientific evidence, and clinical judgment.

A Lyme Disease Education Survey With Only 26 Responses

Dr. Cipriano describes an effort to understand how much local healthcare professionals know about Lyme disease.

She distributed 300 surveys to physicians, nurse practitioners, physician assistants, chiropractors, and naturopathic practitioners.

Only 26 responses were returned.

That represents a response rate of approximately 8.7%.

Dr. Cipriano found the limited participation discouraging.

She also shares that a former colleague contacted her privately to express support for her educational efforts.

The experience reinforced her belief that healthcare professionals need more opportunities to discuss Lyme disease openly and constructively.

Although the response rate does not establish what clinicians know or believe about Lyme disease, it illustrates the challenges Dr. Cipriano encountered while trying to encourage professional engagement.

Why Dr. Cipriano Ran for the ILADS Board of Directors

During the interview, Dr. Cipriano announces that she is running for the ILADS Board of Directors.

Her motivation is to expand membership, improve communication, and encourage more healthcare professionals to participate in Lyme disease education.

She believes her previous career in pharmaceutical sales provides skills that could help.

Before focusing on tick-borne disease care, Dr. Cipriano spent approximately 14 years in pharmaceutical sales and marketing.

She describes working with hospitals and medical decision-makers to explain treatment options and develop professional relationships.

One of the medications she represented was ceftriaxone, commonly known by the brand name Rocephin.

Ceftriaxone is an antibiotic used for certain serious bacterial infections, including selected neurological and cardiac manifestations of Lyme disease.

Dr. Cipriano believes her communication experience could help ILADS reach healthcare professionals who are unfamiliar with its work.

Her goal is to build relationships rather than create confrontation.

She wants clinicians to better understand the experiences of patients with complex tick-borne illnesses and the research being discussed within the ILADS community.

From Her Son's Illness to Lyme Disease Practitioner

Dr. Cipriano explains that she began treating Lyme disease around 2017.

Her son's illness played a major role in that transition.

Initially, she focused on Lyme disease after his testing identified Borrelia.

When his symptoms did not improve as expected, she began considering other possible infections.

She later pursued additional education through ILADS and trained with Dr. Richard Horowitz, MD.

Dr. Cipriano credits that training with helping her develop a broader approach to evaluating patients with complicated symptoms.

She also discusses her son's reported improvement after treatment that addressed suspected additional infections.

His experience remains a personal clinical account and does not establish that every patient with persistent Lyme disease symptoms has Bartonella or Babesia.

The Three Bs and Four Bs of Tick-Borne Illness

Rich and Dr. Cipriano discuss how the Lyme disease community increasingly talks about multiple infections rather than Borrelia alone.

They reference the three Bs:

• Borrelia: The bacteria responsible for Lyme disease
• Bartonella: A group of bacteria associated with several human infections
• Babesia: Parasites that infect red blood cells and cause babesiosis

Dr. Cipriano also mentions a fourth category involving other Borrelia species associated with tick-borne relapsing fever.

She reports encountering more patients with laboratory findings suggesting multiple infections.

Rich asks whether this reflects improvements in testing, increased clinical awareness, or changes in tick-borne pathogen exposure.

Dr. Cipriano believes several factors may be involved.

However, the presence of multiple microorganisms in ticks does not mean every organism can infect humans or that every tick bite transmits multiple diseases.

Appropriate testing should be guided by symptoms, exposure history, geography, and validated diagnostic methods.

Parasites, Specialty Laboratories, and Diagnostic Challenges

Dr. Cipriano describes patients who have presented with suspected parasitic infections.

She discusses the challenges of identifying organisms through laboratory testing and her experience seeking additional evaluations when initial results were inconclusive.

She also raises concerns about the cost of specialty testing, particularly when patients must pay out of pocket.

Her examples include suspected intestinal parasites and other organisms that require identification by qualified laboratories.

During the conversation, Dr. Cipriano expresses her belief that some of these infections may be associated with tick exposure.

Identifying a suspected parasite requires appropriate clinical evaluation and laboratory confirmation. Visual appearance alone may not establish a diagnosis.

The discussion illustrates the frustration patients and clinicians can experience when trying to understand unusual or difficult-to-identify findings.

Mold, Heavy Metals, and Environmental Testing

Dr. Cipriano also discusses evaluating patients for possible environmental exposures.

She mentions mold-related concerns, mycotoxins, and heavy metals as areas she considers in selected cases.

She explains that different laboratories use different testing methods and that she sometimes turns to specialty laboratories when investigating complicated presentations.

However, the accuracy and clinical usefulness of tests vary.

Urine mycotoxin testing is not established as a reliable method for diagnosing illness caused by indoor mold exposure, and heavy metal testing should be selected according to credible exposure history and validated medical standards.

The interview underscores the importance of interpreting laboratory findings carefully rather than assuming every positive result identifies the cause of a patient's symptoms.

Caring for Patients Other Practitioners Consider Too Complicated

Dr. Cipriano shares that some patients arrive after being turned away by other healthcare professionals.

She recalls a mother who contacted numerous Lyme disease practitioners before finding someone willing to evaluate her adult child's complicated case.

Dr. Cipriano explains that her background in critical care has made her comfortable working with medically complex patients.

She also acknowledges the significant time commitment involved.

Her patients may require extensive follow-up, ongoing reassessment, and coordination with other specialists.

She describes working long days and frequently thinking about difficult cases outside normal office hours.

Her commitment reflects a central theme of the conversation: patients with complicated illnesses need clinicians who are willing to investigate, communicate, and continue reassessing their care.

Looking Ahead: Better Education and More Hope for Patients

Near the end of the interview, Rich asks Dr. Cipriano what she hopes will change over the following year.

She expects to encounter more patients with complex illnesses and hopes to continue expanding her educational outreach.

Most importantly, she wants fewer patients to hear that their symptoms are simply imagined.

She encourages healthcare professionals to remain curious, seek additional education, and acknowledge when a condition falls outside their expertise.

Dr. Cipriano also discusses sharing information through her website, social media, and YouTube channel.

She clarifies that she does not currently host her own podcast but participates in interviews with other organizations.

Rich encourages her to continue sharing her perspective because patients benefit from hearing different voices within the medical community.

Their conversation ends with a shared hope for greater understanding, collaboration, and improved access to knowledgeable care.

Key Takeaways

• Neurological symptoms deserve careful evaluation. Dr. Cipriano discusses two patients with persistent seizures and suspected inflammatory neurological complications.
• Autoimmune encephalitis is an important differential diagnosis. Certain patients with unexplained seizures may require investigation beyond routine epilepsy management.
• Professional education remains a challenge. Her Lyme disease survey received 26 responses from 300 invitations.
• ILADS plays an important role in her career. She has been a member since 2018 and was running for its Board of Directors at the time of the interview.
• Her son's illness influenced her medical career. Personal experience led her to pursue additional training in Lyme disease and associated infections.
• Tick-borne illnesses extend beyond Borrelia. The discussion includes Bartonella, Babesia, and tick-borne relapsing fever.
• Unusual laboratory findings require careful interpretation. Specialty testing can be useful in selected situations, but accuracy and clinical validation matter.
• Patients with complex symptoms deserve compassionate care. Dr. Cipriano emphasizes persistence, communication, and continued investigation when appropriate.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich welcomes Dr. Pamela Cipriano back to Tick Boot Camp for a discussion about neurological Lyme disease, persistent seizures, suspected autoimmune encephalitis, tick-borne co-infections, diagnostic challenges, and medical advocacy.

The interview also explores the professional pressures facing Lyme disease practitioners and Dr. Cipriano's efforts to expand education through ILADS.

Explore more interviews with healthcare professionals, researchers, and advocates through Tick Boot Camp's LIVE from ILADS podcast series.

Could overlooked environmental bacteria, immune dysfunction, and mitochondrial health help explain why some Lyme disease patients remain sick despite years of treatment?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes back Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC, a nurse practitioner at Amen Clinics in Northern Virginia, to explore the complex relationship between Lyme disease, tick-borne co-infections, environmental exposures, inflammation, and persistent symptoms.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why some patients struggle to improve after seeing numerous healthcare professionals—and why listening, comprehensive evaluation, and patient-centered care are so important.

Jacki discusses medical gaslighting, the growing recognition of Anaplasma and Ehrlichia infections, cardiovascular complications of tick-borne diseases, and an often-overlooked environmental concern: actinomycetes, a group of bacteria that can be found in indoor environments.

She also previews her work on mitochondrial medicine, including cellular energy production, NAD metabolism, inflammation, and the possible relationship between mitochondrial dysfunction and chronic fatigue.

Throughout the interview, Jacki emphasizes a principle that resonates deeply with the Lyme disease community: Patients deserve to be heard, believed, and thoroughly evaluated—even when their symptoms remain unexplained.

Meet Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC

Jacquelyn “Jacki” Meinhardt is a doctorally prepared, board-certified family nurse practitioner whose clinical interests include neuroinflammation, immune dysfunction, tick-borne infections, environmental illness, and complex chronic health conditions.

At the time of this interview, she had worked at Amen Clinics in Northern Virginia, outside Washington, D.C., for approximately four years.

Jacki also teaches at Georgetown University, bringing her clinical and academic experience to discussions about medical education and emerging research.

During the interview, she shares that she had been nominated for the ILADS Board of Directors.

Since this conversation was recorded, Jacki has joined the ILADS Board, becoming its first nurse practitioner board member.

Her involvement reflects her interest in expanding interdisciplinary collaboration, improving education, and helping healthcare professionals better understand patients with complex chronic illnesses.

Learn more about her work through her Amen Clinics professional profile.

Why Some Patients Remain Sick After Seeing 20 Doctors

Jacki explains that many patients arrive at Amen Clinics after extensive medical journeys.

Some have consulted as many as 20 healthcare professionals, including functional medicine practitioners, without achieving meaningful improvement.

They may have undergone numerous laboratory tests, received multiple diagnoses, and tried different treatment plans.

Rather than immediately recommending another intervention, Jacki begins by asking questions.

She reviews previous testing, medical history, symptoms, treatment responses, and possible environmental exposures.

Her goal is to identify what may have been overlooked.

She also emphasizes the importance of treatment sequencing.

Sometimes patients have received several reasonable recommendations, but Jacki believes the order in which interventions are introduced may affect how well they tolerate or respond to care.

Her approach focuses on understanding the individual patient's circumstances rather than automatically adding more treatments.

Medical Gaslighting, Medical Trauma, and the Power of Being Believed

One of the most meaningful moments in the interview occurs when Jacki discusses the emotional consequences of prolonged diagnostic uncertainty.

She describes patients who have repeatedly been told that their test results are normal or that nothing is medically wrong.

After years of symptoms and unsuccessful treatments, some become fearful that another healthcare professional will dismiss their concerns.

Jacki describes this experience as a form of medical trauma.

She explains that one of the first things she tells patients is:

“I believe you.”

That reassurance can help patients feel safe enough to share their experiences and participate in a productive medical conversation.

Rich asks whether medical gaslighting always involves intentional dismissal or whether some situations reflect limitations in medical education and diagnostic tools.

Jacki emphasizes education rather than assigning blame.

She believes healthcare professionals can improve patient care by communicating more effectively, remaining curious, and recognizing the limitations of their knowledge.

The discussion reinforces an important message: Unexplained symptoms are still real symptoms, and patients deserve compassionate medical attention.

Immune Dysfunction: Finding Common Ground Across Medical Specialties

Jacki explains that she frequently uses the term immune dysfunction when communicating with clinicians who may be unfamiliar with some of the terminology used in Lyme disease and environmental medicine.

Rather than beginning with a discussion of Borrelia, Bartonella, Babesia, mold, or other specific organisms, she focuses on how the immune system may be functioning.

She believes this approach creates opportunities for collaboration across medical specialties.

Jacki also discusses how the COVID-19 pandemic increased public awareness of immune responses, inflammation, and cytokines.

She views the resulting research and medical conversations as opportunities to improve understanding of other complex illnesses.

However, immune dysfunction is a broad concept, not a single diagnosis. Specific immune disorders require appropriate clinical evaluation, and not every chronic symptom is caused by an abnormal immune response.

Lyme Disease Co-Infections: Beyond Borrelia, Bartonella, and Babesia

Rich asks Jacki whether she is seeing changes in the types of infections identified among patients with Lyme disease.

He describes Tick Boot Camp's observations of patients reporting combinations of Borrelia, Bartonella, and Babesia.

Jacki explains that she has considered multiple tick-borne infections in her clinical evaluations for many years.

She also discusses other pathogens that may be relevant depending on a patient's symptoms and exposure history.

These include:

• Borrelia: Bacteria responsible for Lyme disease and certain relapsing fever illnesses
• Babesia: Parasites that infect red blood cells and cause babesiosis
• Bartonella: Bacteria associated with several human diseases
• Anaplasma: Bacteria responsible for anaplasmosis
• Ehrlichia: Bacteria responsible for ehrlichiosis
• Rickettsia: Bacteria associated with spotted fever illnesses, including Rocky Mountain spotted fever

Jacki reports encountering more Anaplasma and Ehrlichia in her practice over the preceding two years.

She acknowledges that she cannot determine whether this reflects changing infection patterns, improved diagnostic testing, or increased clinical awareness.

Her experience highlights the importance of considering other tick-borne infections when a patient's history and symptoms warrant investigation.

It does not mean that every person with Lyme disease has multiple infections.

Cardiovascular Symptoms and Tick-Borne Disease

Jacki discusses her interest in cardiovascular and circulatory health.

She explains that when evaluating patients with certain cardiac abnormalities, she considers whether an infectious disease could be contributing to their symptoms.

The conversation includes heart block, atrial fibrillation, and tick-borne infections that may require further investigation.

Lyme carditis is a recognized complication of Lyme disease that can disrupt electrical signaling in the heart.

Other tick-borne infections may also produce serious systemic complications.

Jacki emphasizes reviewing which infections have already been investigated and whether additional testing is appropriate.

New chest pain, fainting, significant palpitations, or suspected heart block require prompt medical attention.

For another discussion of Lyme disease's neurological and cardiovascular effects, explore Tick Boot Camp's interview with Dr. Medeya Tsnobiladze.

Environmental Actinomycetes: Could There Be More Than Mold in Water-Damaged Buildings?

One of the most distinctive parts of this interview focuses on environmental actinomycetes.

Jacki explains that patients investigating building-related health concerns frequently focus on mold.

However, she believes certain bacteria present in indoor environments deserve additional attention.

Actinomycetes are a diverse group of bacteria found in soil, water, and other environments. Some are also normal members of the human microbiome.

Jacki discusses how these organisms can enter buildings through shoes, clothing, pets, and ordinary outdoor exposure.

She explains that moisture and environmental conditions may influence microbial growth.

Her clinical interest includes evaluating possible environmental exposures in patients with persistent symptoms and complex medical histories.

Actinomycetes, Biofilms, and Indoor Environments

Jacki describes actinomycetes as organisms capable of contributing to biofilm formation under certain conditions.

She discusses how investigating bacterial contamination may differ from evaluating fungal contamination.

She also references research she reports publishing with Dr. Ritchie Shoemaker in 2019 concerning environmental organisms and chronic inflammatory illness.

According to Jacki, understanding these exposures may help clinicians investigate cases where patients continue experiencing symptoms after addressing suspected mold problems.

She also describes considering culture results from different body sites when evaluating selected patients.

Scientific context: The presence of actinomycetes in a building or clinical sample does not automatically establish that they are causing illness. Their proposed role in chronic inflammatory conditions remains under investigation, and laboratory findings require careful interpretation.

Mold, Environmental Testing, and Chemical Sensitivities

Jacki explains that she considers the patient's broader environment when reviewing complicated cases.

Homes, schools, and workplaces can have different environmental conditions, including moisture problems, microbial contamination, and other potential exposures.

Some patients arrive with previous environmental testing results that may need further interpretation.

Jacki believes clinicians should review these findings alongside medical history and symptoms rather than assuming a single exposure explains every health problem.

She also discusses how certain patients report sensitivity to fragrances or cleaning products.

For these individuals, she emphasizes considering cleaning methods and product tolerability when developing practical recommendations.

The conversation illustrates the importance of investigating documented environmental problems without assuming that every detected organism represents a health hazard.

Mitochondrial Medicine: Understanding Energy Production and Chronic Fatigue

Near the end of the interview, Jacki reveals that she is preparing to present on mitochondrial medicine at ILADS.

Mitochondria are cellular structures responsible for producing much of the energy used by the body.

Jacki is interested in how energy metabolism may relate to inflammation, vascular health, and persistent symptoms.

Her presentation explores:

• Mitochondrial function and cellular energy production
• The Krebs cycle
• Pyruvate and lactate metabolism
• NAD and its role in cellular processes
• Endothelial function and blood vessel health
• Inflammatory signaling and metabolic changes

Rich connects this discussion to the profound fatigue frequently reported by people living with Lyme disease.

Jacki believes research into cellular energy pathways may help clinicians better understand some aspects of complex chronic illness.

However, fatigue has many possible causes. It cannot automatically be attributed to mitochondrial dysfunction, and research into energy metabolism does not establish that NAD supplementation or other mitochondrial therapies treat Lyme disease.

Why Medical Education Must Evolve Faster

Jacki expresses frustration that new research findings can take years to reach everyday clinical practice.

She believes physicians, nurse practitioners, physician assistants, and other healthcare professionals need opportunities to learn about emerging evidence more quickly.

Her involvement with ILADS reflects that commitment to continuing education.

Rich agrees that greater collaboration between clinicians, researchers, and advocates can improve awareness and patient care.

Their conversation emphasizes the importance of evaluating new research carefully while helping healthcare professionals remain informed about developments relevant to complex chronic illness.

Key Takeaways

• Patients deserve validation. Jacki emphasizes listening carefully to people who have experienced years of medical dismissal.
• Complex cases require comprehensive evaluation. Reviewing medical history, previous testing, and environmental exposures may reveal overlooked information.
• Immune dysfunction is an important area of investigation. Understanding specific immune abnormalities requires appropriate medical assessment.
• Tick-borne infections extend beyond Lyme disease. Jacki discusses Babesia, Bartonella, Anaplasma, Ehrlichia, and other infections.
• Cardiovascular symptoms warrant careful attention. Certain tick-borne infections can cause serious cardiac complications.
• Environmental actinomycetes are an emerging research topic. Their proposed relationship with chronic inflammatory illness requires further validation.
• Mitochondrial health may provide insights into persistent fatigue. Research into cellular energy metabolism continues to evolve.
• Medical education can help improve care. Jacki advocates for collaboration, research awareness, and better communication across specialties.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich welcomes Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC, back to Tick Boot Camp to discuss Lyme disease, immune dysfunction, environmental actinomycetes, and mitochondrial medicine.

During the interview, Jacki discusses her nomination to the ILADS Board of Directors. She has since joined the board, becoming its first nurse practitioner member.

Explore more conversations with physicians, researchers, and advocates through Tick Boot Camp's LIVE from ILADS interview series.

What if treating Lyme disease is only part of the recovery process—and the next frontier is helping the body repair the damage left behind?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Todd Maderis, ND, founder of Marin Natural Medicine Clinic in Northern California, to explore what he calls “Lyme 3.0”—an evolving approach to complex chronic illness that looks beyond infections to consider immune function, environmental exposures, cellular repair, and long-term recovery.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why some patients continue experiencing fatigue, brain fog, and neurological symptoms even after receiving treatment for Lyme disease and associated infections.

Dr. Maderis discusses the challenges of diagnosing multiple tick-borne infections, the possible roles of mold exposure and heavy metals, the relationship between long COVID and viral reactivation, and how his approach to treating complex chronic illness has evolved since 2012.

The interview also examines emerging diagnostic technologies, including testing from IGeneX, T-Lab, and Galaxy Diagnostics, along with Babesia, Bartonella, alpha-gal syndrome, and practical strategies for preventing tick bites.

His central message: Recovery may require more than identifying and treating infections. For some patients, understanding the factors contributing to persistent symptoms and supporting rehabilitation may be equally important.

Meet Dr. Todd Maderis, ND

Dr. Todd Maderis, ND is the founder and medical director of Marin Natural Medicine Clinic in Marin County, California, just north of San Francisco.

He began focusing on Lyme disease and tick-borne infections in 2012.

Over time, his practice expanded to include patients with complicated medical histories involving several overlapping health conditions.

His areas of clinical interest include:

• Lyme disease, Babesia, Bartonella, and other tick-borne infections
• Mold-related illness and environmental exposures
• Mast cell activation syndrome (MCAS)
• Chronic viral infections, including Epstein-Barr virus (EBV)
• Long COVID
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Autoimmune conditions
• Persistent fatigue, pain, and cognitive symptoms

Dr. Maderis explains that his approach has evolved as he has encountered patients with increasingly complicated combinations of symptoms and diagnoses.

He also shares research and educational information through social media to help patients better understand emerging developments in complex chronic illness.

What Is Lyme 3.0?

One of the most compelling parts of this conversation is Dr. Maderis's explanation of how Lyme disease treatment has evolved.

He describes three stages in the development of his clinical thinking.

Lyme 1.0: Focusing on the Infection

Early treatment approaches primarily emphasized identifying and treating the infectious organisms responsible for Lyme disease and associated conditions.

Dr. Maderis explains that clinicians initially focused heavily on reducing the infectious burden.

Antimicrobial treatment remains essential when a patient has an active infection requiring treatment.

However, he began questioning whether infection-focused interventions alone could explain every patient's ongoing symptoms.

Lyme 2.0: Recognizing Additional Health Conditions

As his practice evolved, Dr. Maderis increasingly evaluated patients for other medical problems occurring alongside tick-borne infections.

These included mold-related concerns, mast cell activation syndrome, chronic viral infections, and autoimmune conditions.

He describes learning about mold-related illness at an ILADS conference around 2013 as a turning point in his clinical career.

That presentation encouraged him to consider environmental exposures in patients whose symptoms were not fully explained by their existing diagnoses.

Lyme 3.0: Recovery, Repair, and Rehabilitation

Dr. Maderis believes the next stage involves understanding what patients may need after appropriate treatment of infections and other identified medical conditions.

He points to people who continue experiencing symptoms such as:

• Persistent fatigue
• Brain fog and cognitive difficulties
• Reduced physical endurance
• Neurological complaints
• Difficulty returning to previous activities

He discusses cellular and mitochondrial health as areas of interest when considering why some patients struggle to regain their previous level of functioning.

His concept of Lyme 3.0 emphasizes the importance of rehabilitation and recovery rather than viewing treatment exclusively as an effort to eliminate pathogens.

This is Dr. Maderis's framework, not an established medical classification or a validated treatment protocol. Persistent symptoms after Lyme disease treatment can have multiple causes and require individualized medical evaluation.

Why Some Lyme Patients Have Multiple Contributing Health Problems

Rich asks Dr. Maderis why clinicians appear to be identifying more complicated cases involving several infections or overlapping medical conditions.

Dr. Maderis believes several developments may be contributing to this observation.

Diagnostic technologies have evolved, clinicians have become more aware of tick-borne co-infections, and geographic patterns of tick exposure continue to change.

He also discusses environmental exposures and the possible effects of other illnesses on immune function.

Dr. Maderis groups the factors he considers into three broad categories:

Infectious factors: Tick-borne infections and other clinically relevant infectious diseases.

Environmental factors: Mold exposure, toxic metals, and other exposures that may warrant investigation.

Traumatic factors: Physical injuries, including head trauma, and psychological stress or trauma that may affect health and recovery.

He explains that some patients arrive with several potential contributing conditions rather than one straightforward diagnosis.

His challenge is determining which findings are clinically significant and which require treatment.

The conversation highlights why complex cases benefit from careful differential diagnosis rather than assuming every symptom has the same underlying cause.

Lyme Disease, Long COVID, and Epstein-Barr Virus Reactivation

Rich and Dr. Maderis discuss whether COVID-19 can influence previously controlled infections.

Dr. Maderis references research investigating the relationship between SARS-CoV-2 infection, immune changes, and Epstein-Barr virus reactivation.

Some studies have identified associations between EBV reactivation markers and long COVID.

He raises the possibility that changes in immune function following COVID-19 could also affect other infections.

However, the extent to which SARS-CoV-2 may cause reactivation of Borrelia infection remains uncertain.

The discussion illustrates an important research question: How do multiple infections and immune responses interact in patients experiencing prolonged symptoms?

Dr. Maderis believes clinicians should remain aware of emerging findings while recognizing that the science continues to develop.

Why a Positive Lyme Antibody Test Doesn't Always Mean Active Infection

Rich and Dr. Maderis discuss the distinction between detecting an infection and detecting evidence of a previous immune response.

Antibody tests measure the immune system's response to an organism rather than directly identifying whether that organism is currently present.

Antibodies against Borrelia can remain detectable for months or years after successful treatment.

This means a positive antibody test does not necessarily establish an active infection.

Conversely, testing early in an infection can produce negative results before detectable antibodies have developed.

Dr. Maderis believes clinicians must interpret results alongside symptoms, medical history, exposure risk, and other clinical findings.

This distinction is particularly important for patients who undergo repeated testing while trying to understand persistent symptoms.

Advanced Lyme Disease and Co-Infection Testing

Dr. Maderis explains that he uses several specialty laboratories when evaluating patients for Lyme disease and associated infections.

He discusses how different testing methods may provide different types of information.

IGeneX: Lyme Disease and Co-Infection Panels

Dr. Maderis describes IGeneX as one of the foundational laboratories he uses when evaluating patients for tick-borne infections.

The laboratory offers testing for Lyme disease and several associated infections.

He explains that he frequently orders comprehensive panels during initial evaluations when the patient's history supports investigation for multiple tick-borne pathogens.

T-Lab: Direct Detection Methods

Dr. Maderis also discusses T-Lab, which uses specialized microscopy and molecular methods intended to detect organisms more directly.

He contrasts these methods with antibody-based testing.

The potential advantage of direct detection is that it attempts to identify evidence of the organism rather than relying solely on the patient's antibody response.

However, the diagnostic accuracy, clinical validation, and appropriate use of individual specialty tests must be evaluated carefully.

Galaxy Diagnostics: Bartonella Testing

Dr. Maderis identifies Galaxy Diagnostics as another laboratory he uses, particularly when investigating Bartonella infection.

He discusses the laboratory's expanded Bartonella testing methods and describes a patient whose infection was detected after earlier testing through other laboratories had been negative.

This experience reinforced his belief that different testing methods may sometimes produce different findings.

For a deeper exploration of Bartonella diagnostics, Tick Boot Camp previously interviewed Nicole Bell of Galaxy Diagnostics about the challenges of detecting tick-borne infections.

No single test can definitively diagnose or exclude every tick-borne disease. Patients should work with qualified clinicians to determine which tests are appropriate and how results should be interpreted.

Mold Exposure, Mycotoxins, and Chronic Illness

Dr. Maderis explains that environmental medicine became an increasingly important part of his practice after attending an ILADS presentation on mold-related illness.

He now considers environmental exposures when evaluating selected patients with complicated symptoms.

The interview distinguishes between investigating a patient's environment and assessing possible exposures within the body.

Testing the Home for Mold

When a patient's history suggests possible mold exposure, Dr. Maderis may recommend an initial home screening.

Depending on the findings, he may suggest a more thorough evaluation by a qualified environmental professional.

The conversation emphasizes identifying possible sources of exposure rather than relying exclusively on medical testing.

Urine Mycotoxin Testing

Dr. Maderis explains that he uses urine mycotoxin testing in his practice.

Mycotoxins are substances produced by certain molds, and exposure can occur through different environmental and dietary sources.

However, the clinical usefulness of urine mycotoxin testing for diagnosing mold-related illness remains uncertain. Such tests are not established as reliable diagnostic tools for determining whether a person's symptoms are caused by indoor mold exposure.

A comprehensive assessment should consider exposure history, environmental conditions, symptoms, and established medical diagnoses.

Heavy Metals, Immune Function, and Environmental Testing

Dr. Maderis also discusses exposure to toxic metals, particularly lead and mercury.

He explains that certain metals can remain in the body long after an exposure has ended.

Lead and mercury can produce significant health effects, including neurological and other systemic complications.

Dr. Maderis considers these exposures when a patient's history or symptoms suggest they may be relevant.

He also acknowledges an important limitation: clinicians cannot routinely test for every chemical encountered in the environment.

The discussion reinforces the importance of selecting tests based on credible exposure history and established clinical indications.

Suspected toxic metal exposure should be evaluated using validated testing methods. Unnecessary testing or unproven detoxification treatments can create additional risks.

Babesia on the East Coast and West Coast

Rich asks Dr. Maderis whether he has noticed changes in Babesia infections among his California patients.

Dr. Maderis explains that clinicians historically associated Babesia microti more strongly with the eastern United States and Babesia duncani with the West Coast.

However, he believes geographic assumptions can be misleading.

He reports encountering different Babesia species in his practice and mentions growing clinical interest in Babesia odocoilei.

Rich shares that he has also observed more Babesia-related concerns in the Lyme disease community on Long Island.

Their discussion highlights the importance of considering geography, travel history, tick exposure, and appropriate diagnostic methods.

Babesiosis is a potentially serious tick-borne disease, particularly for older adults and people with weakened immune systems.

The geographic distribution and human disease significance of individual Babesia species vary, and emerging laboratory findings should not be confused with established population-level prevalence data.

Alpha-Gal Syndrome and the Lone Star Tick

The conversation shifts to alpha-gal syndrome, a potentially serious allergic condition associated with sensitization to a sugar molecule called alpha-gal.

In the United States, alpha-gal syndrome is strongly associated with bites from lone star ticks.

Affected individuals may experience delayed allergic reactions after consuming certain mammalian meat products or encountering other alpha-gal-containing substances.

Dr. Maderis explains that he had not encountered a confirmed case in his California practice at the time of the interview.

Rich contrasts that experience with the prevalence of lone star ticks on Long Island and in other parts of the eastern United States.

They also discuss reports of alpha-gal syndrome on Martha's Vineyard and the possibility of changing tick distributions.

Because alpha-gal syndrome can cause severe allergic reactions, suspected cases should be evaluated by an appropriately qualified healthcare professional.

Could Genetically Modified Mice Help Prevent Lyme Disease?

Rich asks Dr. Maderis about a proposed strategy involving genetically modified mice on Martha's Vineyard.

The idea involves altering the relationship between mice, ticks, and Borrelia bacteria to potentially reduce the transmission of Lyme disease.

Mice are important reservoir hosts for certain tick-borne pathogens, making them a focus of disease-prevention research.

Dr. Maderis expresses concern about introducing genetically modified animals into the environment.

He favors emphasizing established prevention strategies and public education.

This exchange illustrates the broader debate surrounding emerging environmental approaches to reducing tick-borne disease risk.

Potential ecological interventions require careful scientific evaluation, environmental oversight, and community engagement.

How to Perform a Thorough Tick Check

The interview concludes with one of its most practical discussions: preventing tick bites.

Dr. Maderis and Rich agree that regular tick checks are an important part of reducing exposure to tick-borne diseases.

Rich explains that he checks himself twice daily and emphasizes the importance of using both sight and touch.

Dr. Maderis recommends examining the entire body after outdoor activities, particularly when spending time in wooded, grassy, or other tick-prone environments.

Important areas to inspect include:

• Behind the knees
• Under the arms
• Around the waist and groin
• Behind and inside the ears
• Along the scalp and hairline
• Around the back and other hard-to-see areas

Children may need help from a parent or caregiver, while adults can benefit from a partner checking areas they cannot easily inspect.

A shower after outdoor exposure can help remove unattached ticks and provides an opportunity for a thorough examination.

Rich also describes using his fingertips to feel for small attached ticks that might be difficult to see.

If you find an attached tick, remove it promptly with fine-tipped tweezers, grasping it close to the skin and pulling upward with steady pressure.

For a step-by-step guide to prevention, removal, and what to do after a bite, explore the Tick Boot Camp Tick Bite Blueprint.

Key Takeaways

• Lyme 3.0 emphasizes recovery and repair. Dr. Maderis believes some patients need additional evaluation and rehabilitation after treatment of identified infections.
• Complex chronic illness may involve overlapping conditions. Tick-borne infections, environmental exposures, and other diagnosed medical problems can complicate evaluation.
• Long COVID and viral reactivation remain important research topics. Their relationship with persistent symptoms continues to be investigated.
• Testing methods have different strengths and limitations. Dr. Maderis discusses antibody-based testing, direct detection, and specialty laboratories.
• Mold and toxic metal exposures warrant evidence-based assessment. Testing should be guided by medical history and validated methods.
• Babesia and alpha-gal syndrome deserve greater awareness. Tick-borne health risks vary by geography and exposure.
• Persistent symptoms deserve careful evaluation. Continued fatigue or cognitive difficulties do not automatically establish ongoing infection.
• Prevention remains essential. Regular tick checks and prompt tick removal can reduce the risk of tick-borne illness.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich interviews Dr. Todd Maderis about his evolving approach to Lyme disease and complex chronic illness, including infection-focused treatment, environmental medicine, diagnostic testing, and rehabilitation.

The discussion also explores the changing landscape of tick-borne infections and the importance of public education.

Discover more interviews with physicians, researchers, and advocates through Tick Boot Camp's LIVE from ILADS podcast series.

What happens when a Lyme disease doctor realizes she can only help so many patients in her office—but millions of people need better information, more treatment options, and access to knowledgeable healthcare professionals?

For Dr. Myriah Hinchey, ND, the answer has been to build something bigger than her medical practice.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. Hinchey to discuss how she is expanding Lyme disease education and patient support through her Connecticut naturopathic practice, LymeCore Botanicals, the LymeBytes Symposium, and a new educational course.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores herbal medicine for Lyme disease and co-infections, integrative approaches to complex chronic illness, the importance of continuing medical education, and the challenges of making specialized healthcare accessible.

Dr. Hinchey also shares why she created her own botanical medicine company, how her conference connects patients with nonprofit organizations and healthcare professionals, and why she believes education can reach people who may never be able to schedule an appointment with her.

The conversation raises an important question: How can one healthcare professional help thousands of people without personally treating every patient?

Meet Dr. Myriah Hinchey, ND

Dr. Myriah Hinchey is a Connecticut-licensed naturopathic physician specializing in Lyme disease, tick-borne infections, and complex chronic illness.

She is the medical director of TAO: Center for Vitality, Longevity & Optimal Health in Hebron, Connecticut.

Her clinical work focuses on patients experiencing complicated, often infection-associated health problems.

During the interview, Dr. Hinchey explains that her multidisciplinary practice includes:

• Naturopathic medicine
• Lyme-informed psychotherapy
• Acupuncture
• Massage therapy
• Support for patients with complex chronic illness

She works alongside fellow naturopathic physician Dr. Marisa Hauser, who also focuses on Lyme disease, co-infections, and related health concerns.

Beyond her clinical practice, Dr. Hinchey is the founder of LymeCore Botanicals and LymeBytes, an educational platform that brings together healthcare professionals, patients, researchers, and advocacy organizations.

Her professional work reflects a philosophy of combining individualized patient care with broader educational initiatives intended to reach the Lyme disease community.

Why Dr. Hinchey Continues Attending ILADS

Rich begins by asking why Dr. Hinchey regularly participates in ILADS conferences.

Her answer centers on the importance of continuous learning.

Even though her clinical approach may differ from those of other practitioners, she believes healthcare professionals need to understand emerging research and the treatments their colleagues are using.

She explains that patients frequently arrive having already tried different protocols or therapies.

Understanding those approaches allows clinicians to evaluate previous treatments, identify potential problems, and make more informed recommendations.

Dr. Hinchey also believes no practitioner has every answer.

Even after years of clinical experience, she says she regularly learns something new from educational presentations that helps her reconsider a difficult patient case.

For her, attending conferences is not simply about learning new protocols. It is about expanding the clinical knowledge available to patients who have complicated medical histories.

Why She Created LymeCore Botanicals

One of the most interesting parts of this interview is the origin of LymeCore Botanicals, the herbal medicine company Dr. Hinchey co-founded.

She explains that the business began more than a decade before this interview because she was frustrated by inconsistent access to the medicinal herbs she used in her practice.

Her primary concern was supply reliability.

When a clinician develops an individualized treatment plan using botanical products, inconsistent availability can make it difficult to maintain that plan.

Dr. Hinchey wanted greater confidence in the sourcing, purity, potency, and consistency of the herbs available to her patients.

Over time, the project expanded into developing formulations based on her clinical experience and treatment philosophy.

What began as a practical solution for her own patients eventually grew into a resource used by other healthcare professionals.

The Role of Herbal Medicine in Her Clinical Approach

Dr. Hinchey discusses botanical medicine as one component of her integrative approach to Lyme disease and co-infections.

She believes herbal formulations may play a role in addressing different aspects of complex chronic illness, including infection-related concerns and broader physiological dysfunction.

Her approach emphasizes considering the patient's overall condition rather than focusing exclusively on antimicrobial treatment.

However, herbal products vary considerably in their ingredients, quality, evidence, and potential risks.

Some botanical compounds have demonstrated antimicrobial activity in laboratory studies, but these findings do not establish that herbal protocols can cure Lyme disease in humans.

Patients should review supplements with qualified healthcare professionals, particularly when taking prescription medications or managing complicated medical conditions.

The LymeBytes Symposium: Bringing the Lyme Community Together

Dr. Hinchey explains that she created LymeBytes after discovering that nonprofit organizations were helping patients pay for treatment, yet many people—including experienced clinicians—did not know those resources existed.

She wanted to create an event that would connect several important parts of the Lyme disease community.

Her vision included three major goals.

1. Connect patients with nonprofit resources

Dr. Hinchey wanted organizations providing financial assistance, education, and other support to become more visible to people who might benefit from their services.

She also wanted to create opportunities to raise money for these organizations.

2. Provide practical medical education

Rather than focusing exclusively on research presentations, she wanted clinicians to leave with information they could apply in practice.

Her goal was to bring together experienced speakers who could discuss clinical approaches, patient management, and emerging treatment considerations.

3. Introduce patients and practitioners to additional resources

The symposium includes companies and organizations involved in diagnostic testing, nutritional supplements, and complementary interventions.

Dr. Hinchey mentions hyperbaric oxygen therapy, red light therapy, far-infrared saunas, and other supportive modalities as examples of topics represented at the event.

These therapies have varying levels of scientific support and should not be assumed to be effective treatments for Lyme disease.

From a Lyme Conference to a Broader Chronic Illness Symposium

Dr. Hinchey explains that LymeBytes initially focused on Lyme disease and associated tick-borne infections.

Over time, she expanded its educational scope to address other complex health conditions and overlapping symptom presentations.

These include:

• Long COVID
• Mold-related illness
• PANS and PANDAS
• Immune system dysfunction
• Complex chronic infection-associated conditions
• Neurological and inflammatory symptoms

She believes clinicians benefit from examining these conditions together because some patients experience overlapping symptoms or multiple diagnoses.

The symposium is designed for healthcare professionals as well as patients who want to become more informed participants in their medical care.

2026 event update: The next LymeBytes Symposium is scheduled for November 13–14, 2026, in the Fort Lauderdale/Pompano Beach area of Florida, with in-person and virtual attendance options.

Why Education Matters When Doctors Have Long Waiting Lists

Rich raises a challenge that affects many patients seeking specialized Lyme disease care: limited access to experienced practitioners.

Dr. Hinchey shares that her practice once had a waiting list approximately 18 months long.

She recalls receiving angry messages from people frustrated that they could not schedule an appointment sooner.

While she understood their desperation, she also recognized that she could not personally treat everyone who needed help.

She has a family and responsibilities outside her medical practice.

Even working longer hours would not solve the broader problem of limited specialist availability.

Rich uses her experience to explore how healthcare professionals can serve people beyond traditional appointments.

Instead of relying exclusively on one-on-one care, clinicians can share knowledge through conferences, podcasts, educational courses, books, and other resources.

These formats allow information to reach people who live far away, cannot afford specialized consultations, or face lengthy appointment delays.

Although educational resources cannot replace individualized medical care, they can help patients prepare questions, understand available options, and seek appropriate evaluations.

Reaching Patients Through Podcasts and Online Summits

Dr. Hinchey explains that she participates in podcasts and educational events because she wants to reach people who are still searching for explanations for their symptoms.

She describes her involvement in two Healing Lyme Summit events through DrTalks.

At the time, she already had more demand for appointments than her practice could accommodate.

Her motivation for participating was not to attract additional patients.

Instead, she hoped someone listening might recognize a relevant symptom pattern or learn about an avenue of medical evaluation they had not previously considered.

She believes accessible education can encourage patients to ask better questions and seek appropriate clinical assessments.

The conversation also addresses the limitations of relying on a single laboratory result when evaluating complex symptoms.

Lyme disease testing must be interpreted according to the timing of infection, exposure history, clinical presentation, and the characteristics of the test being used.

Educational programs can help patients understand these considerations, but they cannot establish a diagnosis or replace qualified medical assessment.

Treating the Whole Patient: Beyond Antimicrobial Protocols

Dr. Hinchey describes her approach as rooted in functional and naturopathic medicine.

She believes complex chronic illness requires attention to more than the presence of an infectious organism.

During the conversation, she discusses the importance of understanding physiological processes that may influence a patient's symptoms and response to treatment.

These include immune function, inflammation, and other factors affecting overall health.

She also discusses how her conference has evolved to explore possible interactions among tick-borne infections, environmental exposures, and other chronic health concerns.

Her perspective is that clinicians should consider the broader medical picture rather than assuming every patient needs the same intervention.

While comprehensive evaluation can be valuable, proposed mechanisms and treatment strategies should be assessed according to available scientific evidence.

Established Lyme disease treatment recommendations remain important, and complementary interventions should not replace appropriate antimicrobial therapy when indicated.

Why Medical Professionals Need to Keep Learning

A central theme of this conversation is professional humility.

Dr. Hinchey explains that even when she has heard a speaker present many times, she may learn something that changes how she thinks about a difficult case.

She personally selects speakers for LymeBytes based on the topics she believes clinicians and patients need to understand.

Her goal is to identify knowledgeable presenters who can share clinically relevant information.

She also recognizes that medical knowledge continues to evolve.

New research, diagnostic tools, and treatment approaches create opportunities for clinicians to reassess established practices.

Rich agrees but adds another dimension: healthcare professionals should also learn how to communicate their knowledge effectively.

He argues that sharing expertise through education can help more people than relying exclusively on direct clinical services.

Their discussion highlights an opportunity for medical professionals to extend the reach of their experience while continuing to prioritize patient care.

Building an Educational Model That Reaches More People

Rich introduces the concept of a value ladder to explain how professionals can serve people at different levels of engagement.

He describes three approaches:

• Self-directed learning: People use educational resources to build their understanding independently.
• Guided learning: Patients or professionals participate in courses, conferences, or structured educational programs.
• Individualized services: Patients receive direct care from a healthcare professional.

Rich believes Dr. Hinchey has developed a model that incorporates all three.

Her medical practice provides individualized services, LymeBytes offers structured education, and her podcasts and other resources allow people to learn without becoming patients.

He encourages other healthcare professionals to consider similar approaches.

The conversation also addresses a gap in professional training.

Dr. Hinchey recalls graduating from naturopathic medical school without knowing how to handle important business responsibilities, including insurance billing.

Rich observes that physicians, lawyers, and other professionals often receive extensive technical education without comparable training in business operations or public communication.

Both believe these skills can help professionals expand the impact of their work.

A New Lyme Disease Educational Course

Near the end of the interview, Dr. Hinchey reveals another project.

She had been developing an educational course for approximately two and a half years.

The course is intended for both clinicians and members of the public.

Her goal is to organize complex information into a more accessible learning experience for people who cannot attend conferences or receive care at her Connecticut practice.

She explains that her attention to detail and desire to create a comprehensive resource had contributed to delays in completing the project.

Rich encourages her to prioritize making the information available rather than waiting for perfection.

He challenges her to release the course by Christmas 2025.

Dr. Hinchey accepts the challenge with some humor, recognizing that the proposed deadline leaves her only about 10 weeks.

The course was still in development at the time of this interview. Its current availability should be confirmed through Dr. Hinchey's official channels.

Rich and Dr. Hinchey discuss the possibility of another Tick Boot Camp interview dedicated to the course and its educational goals.

Key Takeaways

• Dr. Myriah Hinchey practices in Hebron, Connecticut, where her multidisciplinary clinic focuses on Lyme disease, co-infections, and complex chronic illness.
• LymeCore Botanicals began as a solution to inconsistent herbal supply, eventually expanding into a company serving other healthcare professionals.
• LymeBytes connects patients, clinicians, nonprofits, and educational resources through an annual symposium.
• Her approach emphasizes integrative care, including consideration of infection-related concerns and broader health factors.
• Medical education should continue throughout a clinician's career, particularly as research and treatment approaches evolve.
• Specialist shortages create barriers to care, making accessible educational resources increasingly important.
• Podcasts, summits, and courses can extend a clinician's reach without requiring every person to become a patient.
• Dr. Hinchey is developing additional educational resources intended to help clinicians and patients navigate complex chronic illness.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich reconnects with Dr. Myriah Hinchey to explore her clinical practice, herbal medicine company, educational conference, and broader mission to improve access to Lyme disease information.

The interview emphasizes innovation, continuing education, patient empowerment, and the importance of sharing clinical knowledge beyond the walls of a medical office.

For another in-depth conversation with Dr. Hinchey, listen to Episode 524: From Lyme Patient to Pioneer – an interview with Myriah Hincheyhttps://tickbootcamp.com/episode-541-dr-myriah-hinchey-inside-the-lymebytes-symposium-2025-fast-tracking-healing-for-lyme-and-chronic-illness/.

Explore more physician interviews, research discussions, and advocacy conversations through Tick Boot Camp's LIVE from ILADS series.

What happens when a child spends 10 years searching for a diagnosis, sees 21 doctors, and continues getting sicker while medical tests come back negative?

For author and Lyme disease advocate Terri McCormick, this isn't a hypothetical question. It's part of her family's story—and the experience that inspired her to help others navigate the devastating consequences of delayed and missed diagnoses.

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Terri to discuss her book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, which shares 12 real-life stories of people whose illnesses were initially attributed to other medical conditions.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores the limitations of Lyme disease testing, the emotional toll of medical dismissal, neurological and psychiatric symptoms, and the importance of finding knowledgeable healthcare professionals.

Terri also shares her experiences advocating for two seriously ill daughters, the challenges of navigating multiple medical specialists, and why families need to understand that a negative test doesn't always provide a complete answer.

At the heart of this conversation is a message for patients and caregivers who feel unheard: Your symptoms deserve to be taken seriously, and you are not alone in searching for answers.

Meet Terri McCormick: Mother, Author, and Lyme Disease Advocate

Terri McCormick is an author, speaker, patient advocate, and ILADS Ambassador whose work focuses on improving awareness of Lyme disease and other tick-borne illnesses.

Her advocacy began when her own children developed serious health problems that remained unexplained for years.

Terri describes navigating countless appointments, researching possible explanations, and struggling to find physicians who could connect her daughters' seemingly unrelated symptoms.

What began as a mother's determination to help her children eventually became a broader mission to support families facing similar challenges.

Today, Terri helps people find educational resources and connect with healthcare professionals experienced in tick-borne diseases.

She also serves as an Illinois State Co-Leader for the Center for Lyme Action and contributes to http://LymeDisease.org.

Her experiences inspired her to write Being Misdiagnosed, a collection of patient stories intended to raise awareness about diagnostic delays and the human consequences of medical uncertainty.

A Mother's 10-Year Search for Answers

One of the most emotional parts of this interview is Terri's account of her daughters' illnesses.

Her older daughter developed increasingly debilitating symptoms, including:

• Severe, recurring migraines
• Extreme fatigue and prolonged periods in bed
• Difficulty walking and dragging her legs
• Unusual rashes on her hands
• Significant swelling in her hands
• Symptoms that fluctuated unpredictably

Terri explains that repeated Lyme disease tests came back negative.

Despite her daughter's worsening condition, the family struggled to find a clear explanation.

Some physicians recommended psychiatric evaluations, leaving Terri frustrated that her daughter's physical symptoms were not being adequately addressed.

Her younger daughter experienced a different combination of symptoms, including cardiac concerns, skin problems, and similar hand rashes.

Her illness eventually became so debilitating that she missed approximately 60% of a school year.

Determined to continue her education, she listened to classroom lectures remotely from bed.

Terri recalls consulting numerous medical specialists, including neurologists and rheumatologists.

She describes seeing 21 doctors during the family's search for answers.

Eventually, the family connected with a practitioner who ordered testing through IGeneX, which Terri says helped establish a Lyme disease diagnosis for one of her daughters.

Their experience illustrates how difficult it can be for families when symptoms cross multiple medical specialties and no single clinician has a complete picture.

Why Can Lyme Disease Be Difficult to Diagnose?

Rich and Terri spend considerable time discussing one of the Lyme community's most persistent concerns: diagnostic uncertainty.

Many commonly used Lyme disease tests measure antibodies produced by the immune system in response to infection.

These tests can be useful, but their accuracy depends on several factors, particularly the timing of testing.

Early in infection, a person may not yet have developed detectable antibodies.

This means a negative test does not always exclude Lyme disease, especially when symptoms and exposure history strongly suggest an early infection.

Terri describes her frustration when negative test results became the primary reason clinicians dismissed Lyme disease as a possibility.

She believes doctors should evaluate the full clinical picture, including symptoms, medical history, possible tick exposure, and appropriate laboratory findings.

The interview also highlights the challenges associated with interpreting specialized testing and evaluating patients who have been ill for extended periods.

For additional information about available testing methods and their limitations, explore Tick Boot Camp's Lyme Disease Testing Guide.

When a Negative Test Becomes a Barrier to Care

One of Rich's central observations is that negative test results can influence more than medical decisions.

They can also affect whether patients are believed.

When a person continues experiencing serious symptoms despite inconclusive testing, they may encounter skepticism from healthcare professionals, family members, employers, or friends.

Terri explains that this can be especially difficult for people whose symptoms fluctuate.

Someone may feel well enough to participate in an activity one day but be unable to get out of bed the next.

Without understanding that symptoms can change over time, others may mistakenly question the severity of the illness.

Rich and Terri discuss how this dynamic can leave patients feeling isolated, discouraged, and uncertain about their own experiences.

Their message is that persistent symptoms deserve thoughtful evaluation, even when the initial medical investigation does not produce a clear answer.

A negative Lyme test does not prove that someone is healthy, but it also does not establish that Lyme disease is the cause of their symptoms. A comprehensive evaluation should consider both tick-borne infections and other possible explanations.

Being Misdiagnosed: 12 Stories That Reveal the Hidden Epidemic of Lyme Disease

Terri's book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, brings together 12 real-life accounts of people who experienced prolonged diagnostic journeys.

The book explores how symptoms associated with tick-borne illness may overlap with those of other medical conditions.

Among the diagnoses discussed are:

• Amyotrophic lateral sclerosis (ALS)
• Multiple sclerosis (MS)
• Alzheimer's disease
• Chronic fatigue syndrome
• Sleep disorders
• Psychiatric illnesses, including schizophrenia
• Other neurological and complex chronic conditions

Terri hopes the stories will encourage patients, caregivers, and medical professionals to ask additional questions when an illness remains unexplained or a diagnosis does not fully account for someone's symptoms.

The book also addresses the emotional and social consequences of prolonged illness, including family relationships, medical uncertainty, and the importance of advocacy.

Publication update: Although Terri discussed a planned January 2026 release during this October 2025 interview, Being Misdiagnosed has since been published and is available through her official website.

The Story of David: Decades Without Answers

Terri shares the story of David, one of the individuals featured in her book.

According to Terri, David began experiencing serious health problems around age 10, when he received a diagnosis of spondylitis.

As he grew older, his condition continued to deteriorate.

He underwent repeated medical evaluations, yet his symptoms progressed.

By age 42, Terri explains, David had accumulated an extensive list of diagnoses and was living with significant chronic illness.

She wonders whether earlier recognition of an underlying tick-borne infection could have changed the course of his medical journey.

David's experience raises an important question: What happens when physicians treat individual symptoms and diagnoses without reconsidering whether a broader explanation may be missing?

His story reflects the book's emphasis on persistence, reevaluation, and the importance of listening to patients whose health continues to decline.

When Lyme Disease Symptoms Resemble ALS or Other Neurological Conditions

Another story Terri highlights involves a woman who received an ALS diagnosis.

According to Terri, the woman was evaluated by neurologists, including specialists at Mayo Clinic, and was given a limited life expectancy.

Her daughter subsequently researched other possibilities and helped her pursue an evaluation for Lyme disease.

Terri reports that the woman received a positive Lyme test and underwent treatment.

She describes substantial improvement, explaining that the woman later returned to working approximately 50 hours per week.

Terri presents this experience as an example of why patients facing serious diagnoses may benefit from a careful review of their medical histories and potential alternative or coexisting conditions.

Importantly, this individual story does not establish that Lyme disease causes ALS or that Lyme treatment reverses confirmed ALS. Neurological symptoms can overlap across conditions, and accurate diagnosis requires appropriate specialist evaluation.

The story illustrates the importance of investigating potentially treatable conditions without assuming that every neurological illness is caused by infection.

Neuropsychiatric Lyme Disease and Mental Health Symptoms

Terri also discusses the neurological and psychiatric manifestations that may occur in some people with Lyme disease and other infections.

While Lyme disease is commonly associated with fatigue, joint pain, and other physical symptoms, certain neurological complications can affect cognition, mood, and nervous system function.

Terri explains that two stories in her book involve prominent neuropsychiatric symptoms.

One particularly difficult chapter describes a young man who experienced rapidly worsening psychiatric problems and multiple psychiatric hospitalizations.

Terri believes the possibility of an underlying infectious illness was not adequately investigated early enough.

The story is especially painful because it does not have the hopeful outcome described in many of the other chapters.

Rich connects the discussion to Tick Boot Camp's previous conversations with neuropsychologist Dr. Leo Shea III, whose work includes the cognitive, emotional, and behavioral effects of Lyme disease.

The interview raises questions about the relationship between infection, inflammation, neurological function, and psychiatric symptoms.

Certain infections can cause neuropsychiatric complications, but conditions such as schizophrenia, bipolar disorder, and other mental illnesses have multiple possible causes. They should not automatically be attributed to Lyme disease.

People experiencing new or severe neurological or psychiatric symptoms deserve timely, comprehensive medical evaluation.

Why Family Support Matters During a Diagnostic Journey

Rich suggests that one of the most important audiences for Terri's book may be the families of people living with unexplained chronic illness.

When medical testing is inconclusive, loved ones may struggle to understand why someone remains sick.

Parents may question a child's symptoms.

Spouses may become frustrated by unpredictable limitations.

Friends may withdraw because they do not understand why someone repeatedly cancels plans.

Terri explains that these experiences can intensify the isolation already associated with chronic illness.

She hopes her book will help families recognize the emotional burden of searching for answers and encourage them to respond with greater understanding.

For caregivers, the message is particularly important.

You do not need to have every medical answer to believe that someone is suffering and deserves support.

The Power of Community and Lyme Disease Support Groups

Terri shares that she previously helped run Lyme disease support groups and continues to speak with people searching for information and encouragement.

She describes how meaningful it can be when someone finally encounters another person who understands their experience.

For people who have spent years explaining symptoms to skeptical listeners, hearing someone acknowledge what they are going through can provide tremendous relief.

Terri explains that she regularly receives messages from people asking for guidance.

Her advocacy often begins by listening.

The conversation reinforces the importance of patient communities, peer support, and opportunities to connect with people who have navigated similar challenges.

Support groups cannot replace medical care, but they can help reduce isolation and provide emotional encouragement.

Why Lyme Disease Is Called the Great Imitator

Rich and Terri discuss Lyme disease's reputation as the great imitator.

The phrase reflects the fact that Lyme disease can produce symptoms that overlap with those of other medical conditions.

These may include neurological, musculoskeletal, constitutional, and, in certain cases, cardiac manifestations.

The diagnostic challenge becomes greater when symptoms fluctuate, evolve, or affect several body systems.

Terri's book uses patient experiences to illustrate how complicated these presentations can become.

Rich also shares a memorable phrase from LymeLight Foundation founder Phyllis Bedford, who described Lyme as the "supermarket disease."

Her observation was that people sometimes receive more recognition of their symptoms from others in their community than they do during medical appointments.

The phrase captures a painful reality for some patients: they may feel more understood by people with lived experience than by the professionals they turn to for help.

Terri connects with this perspective because she has witnessed the value of patient-to-patient education throughout her advocacy work.

Helping Patients Find Knowledgeable Lyme Disease Doctors

As an ILADS Ambassador, Terri helps direct people toward educational resources and healthcare professionals with experience in Lyme disease and other tick-borne infections.

She explains that finding an appropriately trained clinician can be difficult, particularly in areas with limited specialist availability.

Even when knowledgeable practitioners are nearby, long waiting lists may delay appointments.

Terri believes medical education is essential to improving this situation.

She discusses the role of ILADS conferences in bringing together clinicians, researchers, and advocates who want to improve the recognition and treatment of tick-borne illnesses.

Patients seeking care can explore the ILADS website for educational resources and information about finding healthcare professionals.

When choosing a clinician, patients should consider professional credentials, diagnostic methods, treatment recommendations, and whether the provider offers an evidence-informed approach that respects patient concerns.

Why Terri Believes Awareness Is Creating Hope

Despite the difficult experiences described throughout the interview, Terri and Rich conclude on an optimistic note.

Rich reflects on changes he has witnessed during years of interviewing Lyme disease patients, physicians, researchers, and advocates.

He explains that he now encounters more people actively working to improve awareness, education, testing, and treatment.

Terri shares his optimism.

She believes patient advocacy, public education, and storytelling can help families recognize when further medical evaluation may be necessary.

Her book is part of that effort.

By sharing the experiences of people who struggled for years before receiving additional answers, she hopes to encourage more informed conversations between patients, families, and healthcare professionals.

The message is not that every unexplained illness is Lyme disease.

It is that patients deserve careful investigation, compassion, and the opportunity to pursue answers when their symptoms remain unexplained.

Key Takeaways

• Delayed diagnosis can have serious consequences. Terri's family spent years searching for explanations while her daughters experienced worsening symptoms.
• Lyme disease testing has limitations. Test results must be interpreted in the context of symptoms, exposure history, timing, and other clinical information.
• Medical dismissal can deepen suffering. Patients may experience isolation and loss of support when their symptoms are questioned.
• Lyme disease can affect multiple body systems. Some manifestations overlap with neurological, rheumatological, and other conditions.
• Families play an important role. Understanding and believing that a loved one's symptoms are real can make a meaningful difference.
• Patient stories can encourage further investigation. Terri's book highlights the importance of considering additional explanations when a diagnosis remains uncertain.
• Community provides validation. Support groups and patient advocates can help people feel less alone.
• Education and advocacy create opportunities for change. Terri hopes her work will improve awareness and encourage earlier recognition of tick-borne illnesses.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

Rich interviews Terri McCormick about her family's diagnostic journey, her work as an ILADS Ambassador, and the experiences that inspired Being Misdiagnosed.

The interview explores the challenges of Lyme disease testing, medical dismissal, neurological symptoms, caregiver support, and the importance of patient advocacy.

It also highlights the role of community and storytelling in helping people navigate complicated medical experiences.

Explore more conversations with physicians, researchers, advocates, and patients in Tick Boot Camp's LIVE from ILADS podcast series.

For more than four decades, Dr. Richard Horowitz has challenged conventional thinking about chronic illness. His work treating more than 13,000 chronically ill patients has led to one of the most influential clinical frameworks in Lyme disease medicine: MSIDS® (Multiple Systemic Infectious Disease Syndrome).

Now, in his groundbreaking new book, Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease, Dr. Horowitz expands that framework far beyond Lyme disease. He presents a bold new model suggesting that many of today's most common chronic illnesses—including Alzheimer's disease, Long COVID, autoimmune disorders, chronic fatigue syndrome, cardiovascular disease, autism spectrum disorders, psychiatric illness, and cancer—share common inflammatory pathways and root causes that can be identified and addressed.

In this exclusive Tick Boot Camp interview, Matt Sabatello and Rich Johannesen spend more than two hours taking a deep dive into Dr. Horowitz's latest work, exploring the science behind chronic inflammation, the evolution of his MSIDS model, his precision medicine approach to healing, and why he believes medicine must shift from treating symptoms to identifying the multiple factors keeping patients sick.

Whether you're living with Lyme disease, another chronic illness, or simply want to understand the future of personalized medicine, this conversation offers one of the most comprehensive discussions Dr. Horowitz has ever shared.

You can purchase Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease on Amazon

Meet Dr. Richard Horowitz

Dr. Richard Horowitz is a board-certified internist, internationally recognized Lyme disease specialist, researcher, educator, and New York Times bestselling author. After beginning his medical career as a traditional internist, he found himself practicing in one of the country's earliest Lyme disease epicenters in New York's Hudson Valley.

Over the past 40+ years, Dr. Horowitz has become one of the world's leading clinicians treating chronic Lyme disease and complex chronic illness. His clinical experience treating more than 13,000 patients led him to develop the MSIDS model, a comprehensive framework that looks beyond a single diagnosis to identify multiple overlapping factors driving persistent illness.

His previous books, Why Can't I Get Better? and How Can I Get Better?, transformed how many physicians and patients approach chronic Lyme disease. His newest book expands that framework to virtually every major chronic disease.

In This Episode, You'll Learn:

Why Dr. Horowitz Believes Chronic Disease Needs a New Model

Rather than viewing illnesses as isolated diagnoses, Dr. Horowitz argues that chronic diseases often share common inflammatory drivers.

He explains why treating a diagnosis alone frequently fails while identifying multiple underlying causes can dramatically improve outcomes.

Understanding the MSIDS Model

The conversation explores the evolution of MSIDS (Multiple Systemic Infectious Disease Syndrome), which identifies sixteen overlapping contributors to chronic illness.

The six primary "drivers of inflammation" include:

• Chronic infections
• Environmental toxins
• Microbiome dysfunction
• Leaky gut and food sensitivities
• Vitamin and mineral deficiencies
• Sleep disorders

Dr. Horowitz explains how these root causes create widespread inflammation that then produces additional downstream effects throughout the body.

The Three I's: Infection, Inflammation, and Immunity

One of the interview's central themes is Dr. Horowitz's "Three I's" framework.

He explains how:

• Persistent infections trigger inflammation
• Chronic inflammation damages immune function
• Impaired immunity allows additional infections to thrive

Breaking this cycle, he argues, is essential for long-term recovery.

Chronic Inflammation: The Common Thread

A major focus of the discussion is inflammation.

Dr. Horowitz explains why inflammation—not simply infection—may be the underlying mechanism connecting:

• Lyme disease
• Long COVID
• Alzheimer's disease
• Autoimmune disorders
• Mood disorders
• Chronic fatigue syndrome
• Cardiovascular disease
• Cancer
• Autism spectrum disorders

The 16 Inflammatory Pathways

Building upon the MSIDS model, Dr. Horowitz discusses sixteen major inflammatory pathways that regulate immune function and chronic disease.

He explains how pathways such as NF-κB, NRF2, the NLRP3 inflammasome, and prostaglandin signaling interact to sustain inflammation and why targeting these pathways may improve outcomes across numerous diseases.

Precision Medicine Instead of One-Size-Fits-All Care

Rather than treating everyone identically, Dr. Horowitz advocates for personalized medicine.

Every patient presents a unique combination of infections, environmental exposures, immune dysfunction, nutritional deficiencies, hormone imbalances, mitochondrial dysfunction, and other contributing factors.

The goal is to identify each person's unique inflammatory burden and systematically remove the factors preventing recovery.

Dapsone Combination Therapy

Dr. Horowitz explains how years of clinical experience led to the development of his Dapsone Combination Therapy protocols.

The discussion covers:

• Persister bacteria and biofilms
• Combination antibiotic strategies
• Reducing Herxheimer reactions
• Supporting detoxification
• Managing treatment side effects
• The importance of antioxidants, probiotics, methylfolate, glutathione, and other supportive therapies

He emphasizes that successful treatment involves much more than simply prescribing Dapsone.

Lyme Disease, Alzheimer's Disease, and Neuroinflammation

The interview also explores Dr. Horowitz's recent work investigating Lyme disease and Alzheimer's disease.

He discusses how chronic infections, environmental toxins, and neuroinflammation may contribute to cognitive decline and why reducing inflammation may become an important future direction for neurodegenerative disease research.

Emotional Trauma and Chronic Illness

Drawing from Chapter 3 of his new book, Dr. Horowitz discusses the biological impact of trauma and chronic stress.

He explains why unresolved trauma, limbic system dysfunction, and chronic stress physiology can perpetuate inflammation and why healing often requires addressing both physical and emotional health.

Environmental Toxicity

Chapter 4 of the book examines the growing role of environmental toxins.

Dr. Horowitz discusses:

• Mold exposure
• Heavy metals
• Air pollution
• Plastics and endocrine disruptors
• Pesticides
• Water quality

He argues that modern environmental exposures contribute significantly to chronic inflammation and should be evaluated as part of any comprehensive treatment plan.

Prevention Matters

Although much of the discussion centers on treating chronic illness, Dr. Horowitz emphasizes prevention.

He shares many of the lifestyle practices he personally follows, including:

• Anti-inflammatory nutrition
• Exercise
• Sleep optimization
• Stress reduction
• Detoxification support
• Targeted supplementation
• Reducing environmental toxin exposure

His message is simple: protecting health before illness develops may be just as important as treating disease after it appears.

Key Takeaways

• Chronic illness often results from multiple overlapping causes rather than a single diagnosis
• Inflammation may be the common biological mechanism connecting many seemingly unrelated diseases.
• The MSIDS model provides a practical framework for identifying and treating these underlying contributors
• Personalized precision medicine may offer better outcomes than symptom-focused treatment alone
• Addressing infections, toxins, gut health, nutrition, sleep, immune dysfunction, and emotional health together may dramatically improve recovery
• Prevention through lifestyle and inflammation reduction should become a central focus of modern medicine.

Why This Episode Matters

For decades, Dr. Richard Horowitz has challenged traditional assumptions about chronic disease.

In Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease, he brings together thousands of patient experiences, years of clinical research, and an evolving understanding of inflammation into one comprehensive roadmap for patients and physicians alike.

Whether you agree with every conclusion or simply want to better understand one of today's most influential voices in integrative medicine, this conversation offers an extraordinary look at how the future of chronic illness care may evolve.

If you or someone you love is navigating Lyme disease, Long COVID, autoimmune illness, chronic fatigue, persistent inflammation, or another complex chronic condition, this is an episode you won't want to miss.

Can a multidisciplinary approach to Lyme disease treatment help patients better understand their illness, develop individualized treatment plans, and build a foundation for long-term recovery?

In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Francisco Ulloa, MD of Sanoviv Medical Institute in Mexico to explore the clinic's approach to integrative Lyme disease treatment, functional medicine, precision-oriented care, and patient education.

Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation offers an inside look at how Sanoviv brings together physicians, nutritionists, psychologists, and other specialists to evaluate patients and develop coordinated treatment strategies.

With approximately 17 years of experience at Sanoviv, Dr. Ulloa explains why he believes treating complex chronic illness requires understanding the individual patient, not simply following a standardized protocol.

Rich and Dr. Ulloa also discuss the emotional challenges of chronic illness, the relationship between conventional and functional medicine, and why the habits patients develop during treatment may be important after returning home.

For people researching Lyme disease treatment options in Mexico, this interview provides insight into Sanoviv's clinical philosophy, patient evaluation process, and residential care experience.

About Dr. Francisco Ulloa, MD

Originally from Mexico, Dr. Francisco Ulloa studied and worked in Guadalajara before joining Sanoviv Medical Institute.

He first learned about the facility approximately 20 years before this interview through a professional relationship between Sanoviv and the university where he worked.

During his initial visit, he was impressed by the environment and its approach to healthcare. He hoped to eventually become part of the medical team.

Approximately two years later, he received an invitation to join the institute.

By the time of this interview, Dr. Ulloa had spent approximately 17 years working at Sanoviv.

His clinical philosophy emphasizes multidisciplinary collaboration, functional medicine, individualized medical planning, and helping patients understand their health.

He believes one of the institute's greatest strengths is bringing healthcare professionals from different disciplines together to evaluate complex cases and coordinate patient care.

What Makes Sanoviv's Approach to Lyme Disease Different?

Located in Rosarito Beach, Baja California, Mexico, Sanoviv Medical Institute offers residential integrative medical programs for patients with a variety of health concerns, including Lyme disease and associated conditions.

Dr. Ulloa describes Sanoviv as a functional medicine clinic built around collaboration among multiple healthcare disciplines.

Rather than having patients visit specialists independently and attempt to coordinate recommendations themselves, the institute brings those professionals together within one facility.

Its team includes medical doctors, nutritionists, psychologists, chiropractors, kinesiologists, fitness professionals, and biological dentistry specialists.

Dr. Ulloa explains that the clinic's physicians have training associated with the Institute for Functional Medicine (IFM).

Patients typically spend several weeks at the facility, although some extend their stays depending on medical needs, personal goals, and financial circumstances.

During that time, the team works to understand each patient's medical history, evaluate current health concerns, and develop a coordinated plan.

How the Multidisciplinary Evaluation Process Works

One of the most revealing parts of the interview is Dr. Ulloa's description of Sanoviv's medical meetings.

When patients arrive, different members of the clinical team evaluate their cases from their respective professional perspectives.

The team then meets to discuss findings, compare observations, and determine treatment priorities.

Dr. Ulloa explains that the most important issue to address first may not always be the symptom the patient finds most troubling.

This is where collaboration becomes particularly valuable.

Instead of making decisions based on one professional's perspective, the team considers the patient's broader medical circumstances.

Rich describes this as a precision-oriented approach to medicine, where the treatment strategy is developed around the individual rather than applying the same protocol to everyone.

Why Lyme Disease Treatment May Need to Be Individualized

Dr. Ulloa emphasizes that people with Lyme disease can have very different medical histories, symptoms, and treatment needs.

He discusses several factors that may influence the clinical picture, including immune system function, genetics, underlying health conditions, previous treatments, and individual susceptibility.

His philosophy is that clinicians should evaluate these differences when developing a treatment strategy.

For some patients, this may mean addressing sleep disturbances, nutritional concerns, physical limitations, or other diagnosed medical conditions alongside appropriate treatment for Lyme disease.

Dr. Ulloa believes the goal should be to understand the patient as a whole rather than focusing exclusively on one symptom.

This approach is especially relevant to people experiencing complex or persistent symptoms who may benefit from coordinated evaluation across multiple medical specialties.

Importantly, Lyme disease is caused by infection with Borrelia bacteria. Individualized supportive care does not replace evidence-based diagnosis or appropriate antibiotic treatment.

The Power of Helping Patients Understand Their Medical History

Dr. Ulloa identifies patient education as one of the most meaningful aspects of the Sanoviv experience.

People living with complicated chronic illnesses may arrive after years of searching for explanations.

Some have consulted numerous healthcare professionals, undergone extensive testing, or tried multiple treatments without achieving the improvement they hoped for.

Dr. Ulloa explains that the medical team works to review each patient's history and communicate its findings in a way the patient can understand.

During the first weeks of treatment, patients may interact frequently with physicians and other specialists.

These conversations provide opportunities to understand treatment recommendations, discuss priorities, and ask questions.

Dr. Ulloa describes how meaningful it can be when a medical team helps patients make sense of their health history.

For people who have struggled to feel heard or understood, having their experiences carefully evaluated can provide validation and a clearer path forward.

Emotional Support, Hope, and Chronic Illness

Rich asks Dr. Ulloa about the relationship between emotional well-being and the treatment experience.

Chronic illness can affect much more than physical health.

Patients may face uncertainty about their future, changes in employment, financial pressure, disrupted relationships, and the emotional exhaustion of navigating ongoing symptoms.

Dr. Ulloa explains that psychological support is an important part of Sanoviv's multidisciplinary approach.

He believes clinicians should recognize the emotional challenges associated with illness while helping patients understand their treatment options.

The conversation also explores the importance of hope.

When patients have experienced years of setbacks, a coordinated medical plan and supportive clinical environment may help them feel more confident about the future.

However, emotional outlook does not determine whether someone will recover from Lyme disease. Patients should never be blamed for persistent symptoms or made to feel that they have failed because improvement has been difficult.

Hope is most meaningful when accompanied by appropriate medical care, honest communication, and realistic expectations.

Why Lifestyle Education Is Central to the Sanoviv Experience

A major theme of this interview is what happens after a patient leaves a residential treatment program.

Rich raises the concern that some people may expect an intensive medical experience to resolve their health challenges without requiring any changes to their everyday routines.

Dr. Ulloa explains that Sanoviv emphasizes lifestyle education because the institute wants patients to continue applying what they learn after returning home.

The discussion includes nutrition, sleep, physical activity, emotional well-being, and maintaining appropriate health practices.

Dr. Ulloa believes these factors can influence general health and a patient's ability to manage certain medical conditions.

He also acknowledges that not every patient is equally interested in a lifestyle-oriented approach.

Some people seek a quick intervention, while others are willing to participate in a more comprehensive program.

His goal is to help patients understand the reasoning behind recommendations so they can make informed decisions about their ongoing care.

Lifestyle changes may support overall wellness and symptom management, but Lyme disease is an infectious illness—not a consequence of unhealthy habits—and these measures are not substitutes for appropriate medical treatment.

Can Conventional Medicine and Functional Medicine Work Together?

Dr. Ulloa challenges the idea that patients must choose exclusively between pharmaceutical medicine and complementary approaches.

He describes encountering people with strongly held beliefs about different types of treatment.

Some prefer to avoid prescription medications, while others are skeptical of nutritional or lifestyle-based interventions.

His approach is to consider the available options according to the patient's clinical needs.

He provides an example involving someone with longstanding sleep difficulties who may benefit from carefully selected short-term medication while other aspects of care are addressed.

Dr. Ulloa describes medication in this situation as a temporary support that may help the patient transition toward a broader management plan.

The conversation illustrates his belief that treatment should not be limited by rigid philosophical boundaries.

Medication decisions must still account for evidence, safety, potential interactions, and the individual patient's condition. Some medications are appropriate for short-term use, while others may be necessary for long-term treatment.

Moving Beyond the Expectation of a Quick Cure

Rich and Dr. Ulloa discuss the expectations patients may bring to an intensive medical program.

Dr. Ulloa believes some people approach treatment hoping for one intervention that will resolve every symptom.

He explains that complex health conditions may require a more comprehensive approach and ongoing medical attention.

Their discussion includes the distinction between cure and remission.

Dr. Ulloa expresses a preference for discussing remission in certain chronic medical situations because he believes it encourages more realistic conversations about sustained improvement.

The meaning of these terms varies by disease.

For Lyme disease, appropriate antibiotic treatment cures the infection in most patients, although some individuals experience persistent symptoms after treatment.

Those symptoms deserve careful evaluation and compassionate medical attention.

The broader message of the conversation is that patients benefit from understanding what a treatment program can realistically offer and what additional care may be needed afterward.

The Importance of Trust and Shared Decision-Making

Dr. Ulloa encourages patients to approach treatment with openness, particularly when recommendations challenge their previous assumptions.

He describes the value of allowing medical professionals to explain their approach before rejecting an intervention based on personal beliefs.

This part of the conversation raises an important principle: effective healthcare depends on trust and collaboration.

Patients should feel comfortable asking questions, discussing concerns, reviewing potential risks, and understanding why a treatment is being recommended.

Clinicians, in turn, should respect patients' experiences, preferences, and right to make informed decisions.

A strong patient-provider relationship combines professional expertise with the patient's knowledge of their own symptoms and medical history.

Exploring Sanoviv's Lyme Disease Treatment Program

This interview focuses primarily on the philosophy and medical coordination behind Sanoviv's care.

For listeners interested in the specific treatments offered at the facility, Tick Boot Camp previously interviewed Bill Mansell about the institute's residential Lyme disease program.

Episode 499: Comprehensive Lyme Disease Treatment at Sanoviv Medical Institute – Bill Mansell explores the program's approach to diagnostic evaluation, antibiotics, whole-body hyperthermia, nutritional support, and aftercare.

That conversation provides additional context about the treatments and services discussed by Sanoviv representatives.

Some integrative interventions, including whole-body hyperthermia for Lyme disease, are not established standard treatments and may involve significant medical risks. Patients should independently evaluate the evidence and safety of specific procedures.

Together, these two interviews offer different perspectives: Bill Mansell discusses the treatment program, while Dr. Ulloa explains the medical philosophy, team collaboration, and patient experience.

How to Become a Patient at Sanoviv

At the end of the interview, Rich asks Dr. Ulloa how prospective patients can contact the institute.

Dr. Ulloa explains that the admissions process begins through Sanoviv's official website.

Prospective patients can complete a contact form and communicate with an admissions representative.

The admissions team may request medical history, laboratory results, and other relevant documentation.

A physician then reviews the available information to help determine which services or programs may be appropriate.

Dr. Ulloa explains that Sanoviv receives inquiries from patients in the United States, Canada, Europe, Asia, and other regions.

Anyone considering a residential medical program should ask about the proposed treatment plan, supporting evidence, medical risks, total costs, and arrangements for follow-up care before making a decision.

Key Takeaways from Dr. Francisco Ulloa

• Multidisciplinary care: Sanoviv brings together professionals from different healthcare disciplines to evaluate patients and coordinate treatment.
• Personalized planning: Dr. Ulloa believes complex medical conditions require attention to each patient's individual circumstances.
• Patient education: Helping patients understand their medical history and treatment recommendations is a major part of the institute's philosophy.
• Emotional support: Psychological well-being is addressed alongside physical health concerns.
• Integrative medicine: Dr. Ulloa advocates considering appropriate conventional and supportive interventions rather than relying on one rigid philosophy.
• Long-term wellness: The clinic emphasizes helping patients develop health practices they can continue after leaving the facility.
• Shared decision-making: Effective care requires communication, trust, and informed participation.
• Realistic expectations: Intensive medical programs should be viewed as one possible component of a broader healthcare plan rather than a guaranteed cure.

About This LIVE from ILADS Interview

This conversation was recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas.

The conference brings together healthcare professionals, researchers, and advocates to discuss Lyme disease, associated tick-borne infections, and emerging approaches to patient care.

Rich and Dr. Ulloa conclude by discussing the possibility of a future, longer-form Tick Boot Camp interview exploring Sanoviv's work in greater detail.

Discover additional conversations with physicians, researchers, and advocates in Tick Boot Camp's LIVE from ILADS interview series.