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 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.

What happens when a healthcare professional suddenly loses the ability to walk, struggles to get answers from major medical institutions, and is told Lyme disease doesn't exist where she lives?

In this LIVE from ILADS interview, Tick Boot Camp welcomes Dr. Kristi Hellenbrand, DC, a Georgia chiropractor, Lyme disease survivor, author of Let Me Tell You a Secret…She Makes It: A Lyme Survival Story, and Global Lyme Alliance ambassador.

In the fall of 2020, Kristi experienced a devastating neurological decline. Within approximately 60 days, she could no longer walk. Migraines, tremors, memory problems, and episodes of disorientation followed.

Despite evaluations at major medical institutions, she struggled to obtain a clear explanation for her symptoms. She recalls being told she might have multiple sclerosis and hearing that Lyme disease wasn't a concern in Georgia.

Eventually, a local functional medicine physician helped her pursue a different treatment approach.

Kristi reports achieving remission in 2021.

But her journey didn't end with medical treatment.

She also had to rebuild her physical health, process the grief of losing her chiropractic practice, navigate the emotional consequences of chronic illness, and discover a new purpose through Lyme disease education and advocacy.

Her story offers a message for people who feel overwhelmed by their diagnosis:

Healing is possible, and someone else's recovery story may help you discover questions, resources, and approaches worth exploring with your own healthcare team.

When Lyme Disease Changes Everything in 60 Days

Before becoming a Lyme disease advocate, Kristi was a practicing chiropractor, mother, wife, and horse owner living south of Atlanta, Georgia.

Then, in 2020, her health rapidly deteriorated.

Within approximately two months, she lost the ability to walk.

Her neurological symptoms included:

• Severe migraines
• Tremors
• Memory lapses
• Cognitive dysfunction
• Disorientation in familiar surroundings
• Significant mobility impairment

At one point, she became lost only two miles from home.

Kristi describes the fear of watching her body and brain change while struggling to find a physician who could explain what was happening.

Her experience became particularly frustrating when she was told that Lyme disease wasn't found in Georgia.

For Kristi, the lack of answers became almost as frightening as the symptoms themselves.

When a Healthcare Professional Becomes the Patient

As a chiropractor, Kristi was already familiar with healthcare.

But that didn't make navigating her own unexplained illness easy.

She sought evaluations from major medical institutions, including Emory, Piedmont, and Mayo.

According to Kristi, those encounters did not produce a clear diagnosis or treatment plan that resolved her illness.

She ultimately connected with a local functional medicine physician who was willing to investigate Lyme disease as a possible explanation.

That experience reinforced something frequently discussed on Tick Boot Camp:

Patients with complicated symptoms need clinicians who listen, investigate, and remain curious when the first explanation doesn't fit.

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

The Treatment Journey: Double-Dose Dapsone

Kristi describes pursuing an intensive treatment approach influenced by research from Dr. Richard Horowitz, a physician known for his work with Lyme disease and other tick-borne illnesses.

She specifically discusses the double-dose dapsone protocol.

Although Kristi did not personally treat with Dr. Horowitz, she and her physician reviewed his published work and incorporated a related approach into her treatment.

Kristi recalls that the protocol was challenging and that her physician was initially apprehensive about using such an intensive strategy.

Nevertheless, Kristi reports that this period of treatment became an important turning point in her recovery.

Her experience is a personal account, not evidence that double-dose dapsone is appropriate or effective for everyone. Dapsone-based multidrug protocols can involve significant medical risks and require careful clinical oversight.

Learn more about these approaches through Tick Boot Camp's interviews with Dr. Richard Horowitz.

Why Kristi Wrote Let Me Tell You a Secret…She Makes It

Kristi's illness forced her to become a student of Lyme disease.

While bedridden, she read extensively about the infection, associated conditions, available treatments, and recovery.

She remembers needing approximately 20 books simply to begin understanding the basics.

That experience inspired an important question:

Why should every newly diagnosed patient have to do all this research alone?

Her answer was to write a book that combines a personal recovery memoir with practical Lyme disease education.

Let Me Tell You a Secret…She Makes It: A Lyme Survival Story was published in 2023.

Kristi explains that the book includes educational sections addressing topics such as:

• Understanding Lyme disease
• Tick-borne co-infections
• Treatment options
• Navigating medical care
• Financial challenges
• Finding help
• Supporting the body during recovery
• Emotional health and grief
• Family relationships
• Rebuilding life after serious illness

She began writing before she knew how her own story would end.

Originally, part of her motivation was to preserve the experience for her children.

Over time, the project became something larger: a resource for other patients and their families.

Learn more about Kristi's book and advocacy through Lyme Lives Here.

Learning the Language of Lyme Disease

Rich and Kristi discuss one of the biggest challenges facing newly diagnosed patients:

Lyme disease comes with an unfamiliar vocabulary.

Suddenly, patients may be hearing terms such as:

• Borrelia
• Bartonella
• Babesia
• Co-infections
• Neuroborreliosis
• Biofilms
• Dapsone
• Herxheimer reactions
• Nervous-system regulation
• Rehabilitation
• Remission

Understanding these terms can help patients communicate more effectively with healthcare professionals and evaluate the information they encounter.

Kristi designed her memoir to help shorten that learning curve.

Rich connects her educational approach with Tick Boot Camp's Tick Bite Blueprint, a resource developed to help people understand practical steps following a tick bite.

Putting Out the Fire vs. Rebuilding the Body

One of Kristi's central recovery concepts is distinguishing between addressing the active illness and rebuilding afterward.

She describes the initial phase of treatment as putting out the fire.

Once she felt the immediate crisis had been addressed, she shifted her attention toward rehabilitation.

Kristi discusses working on:

• Digestive health
• Physical recovery
• Neurological symptoms
• Cognitive function
• Nutrition
• Emotional health
• Nervous-system regulation

Her perspective is that treatment and rehabilitation are related but not necessarily identical phases.

The body may need continued support even after the most severe symptoms improve.

This leads to one of the interview's most important connections with Tick Boot Camp's broader healing framework.

The Four Phases of Lyme Recovery

Rich shares Tick Boot Camp's four-phase model, developed from recurring themes in patient recovery interviews.

1. Prehabilitation

Preparing and supporting the body before intensive treatment.

2. Assist

Supporting the immune system and addressing microbial burden through an individualized medical plan.

3. Rehabilitation

Rebuilding physical, neurological, and functional capacity.

4. Maintenance

Developing sustainable habits, monitoring health, and reducing the risk of future tick-borne infections.

Kristi recognizes elements of all four phases in her own experience.

The conversation illustrates how recovery may involve much more than a single treatment protocol.

It also emphasizes that this is a framework for understanding recovery stories, not a universal medical sequence that every patient must follow.

The Grief of Losing Your Former Life

One of the most emotionally powerful parts of the conversation involves grief.

Kristi didn't simply lose physical function.

She also lost parts of her identity and independence.

She was forced to close her chiropractic practice.

She could no longer participate in many of the activities she loved.

Her horses remained in the pasture while she recovered.

Her children took on additional responsibilities.

Her husband helped shoulder the financial burden.

Kristi remembers experiencing denial, anger, sadness, loneliness, and fear.

She describes the profound isolation that can accompany serious chronic illness, especially when someone feels their life is disappearing piece by piece.

Her memoir explores these emotions openly.

It also gives family members and caregivers an opportunity to better understand what a loved one may be experiencing.

Why Caregivers Need to Hear These Stories

Kristi explains that some readers have passed her book to spouses, relatives, and other caregivers.

That has become one of its unexpected benefits.

Someone living with Lyme disease may struggle to explain the full experience of losing mobility, employment, independence, or hope.

A memoir can help communicate those experiences.

Kristi's husband initially found the book difficult to read because he had lived through the events alongside her.

For other families, however, reading her story has helped open conversations about illness and caregiving.

Chronic illness affects the entire family, even when only one person has the diagnosis.

Anger, Grief & Finding Hope

Kristi is open about the role anger played in her journey.

At one point, frustration with her declining health became a powerful motivation to pursue treatment.

But she also describes eventually moving toward a quieter emotional place.

Her experience wasn't simply about fighting harder.

It involved grieving what she had lost and discovering how to live again.

Rich connects her story with Tick Boot Camp's discussions about grief, purpose, and the emotional changes people may experience during recovery.

The message isn't that everyone must move through grief in the same way.

It's that grief deserves recognition.

People can experience sadness, anger, fear, and hope at different points—and sometimes simultaneously.

DNRS, Neuroplasticity & Nervous-System Regulation

During the fall of 2021, Kristi began exploring nervous-system regulation.

She discovered Annie Hopper's Dynamic Neural Retraining System (DNRS).

Kristi describes the program as helping her shift her identity away from being defined exclusively by illness.

She began recognizing that life could contain meaning, beauty, and possibility beyond the struggle to recover.

That emotional shift became an important part of her personal journey.

Nervous-system and neuroplasticity programs are not substitutes for appropriate medical evaluation or treatment of infection, and their benefits for persistent Lyme symptoms remain an area requiring more research.

For related Tick Boot Camp conversations, explore Cathleen King's Primal Trust interview and Lindsay Mitchell's Vital-Side interview.

From Lyme Patient to Global Lyme Alliance Ambassador

Kristi's recovery eventually led her toward advocacy.

She became involved with Global Lyme Alliance, first supporting other patients as a mentor and later serving as a Georgia ambassador.

Her advocacy focuses on improving Lyme disease awareness and helping people access information she struggled to find during her own illness.

Kristi also describes speaking with healthcare professionals in her community about Lyme disease.

She hopes that increased awareness will help more patients receive timely consideration of tick-borne illness when symptoms and exposure histories warrant it.

Her work is also connected to Lyme Lives Here, an educational initiative originally established by her daughter, Brooklynn, as a Girl Scout Gold Award project.

What began as a family's experience has grown into an effort to educate and support others.

Why Georgia Needs Lyme Disease Awareness

Kristi's experience challenges the assumption that Lyme disease should automatically be dismissed because a patient lives in the southern United States.

She recalls being told that Lyme disease wasn't a concern in Georgia.

That message contributed to her frustration during the diagnostic process.

Geographic risk varies, and not every tick bite transmits Lyme disease. Nevertheless, clinicians should evaluate a patient's symptoms, travel and exposure history, and the possibility of other locally relevant tick-borne illnesses rather than relying on an overly simplistic geographic assumption.

Kristi now uses her experience to encourage greater awareness among patients and healthcare professionals.

The Power of a Recovery Memoir

Rich explains why Tick Boot Camp values stories from people who have experienced meaningful recovery.

A recovery memoir can provide something different from a medical textbook.

It can show what one person actually experienced:

What they tried.

What helped.

What didn't.

How they handled setbacks.

What changed emotionally.

How they rebuilt their lives.

And what they learned along the way.

But Rich also makes an important distinction:

Someone else's recovery model doesn't have to become your recovery model.

A treatment or approach that helped one person may not work for another.

That doesn't mean the patient has failed.

It may simply mean they need a different approach, additional investigation, or another member of their healthcare team.

Recovery stories can offer ideas and hope without becoming rigid instructions.

From Survival to Purpose

Kristi's story comes full circle at ILADS.

The chiropractor who once struggled to walk is now attending a major Lyme disease conference, meeting clinicians, discussing her book, and helping other patients.

She has transformed some of the knowledge gained during her illness into education and advocacy.

Her recovery hasn't erased the fear she experienced or the possibility of future health challenges.

But she no longer describes her life as being dominated by the severe symptoms she experienced in 2020.

And she has found a new purpose.

For someone currently bedridden, newly diagnosed, frightened, or struggling to understand what comes next, her story offers a reminder:

Your life can change again. Your future doesn't have to look exactly like your present. And you don't have to navigate the journey alone.

About Dr. Kristi Hellenbrand, DC

Dr. Kristi Hellenbrand is a chiropractor, author, Lyme disease survivor, and Georgia ambassador for Global Lyme Alliance.

After experiencing a severe neurological illness beginning in 2020, Kristi pursued treatment for Lyme disease and reports achieving remission in 2021.

Her experience inspired her book, Let Me Tell You a Secret…She Makes It: A Lyme Survival Story, which combines memoir, patient education, and reflections on chronic illness, grief, family, and recovery.

She also supports Lyme disease awareness through public speaking, education, patient mentorship, and the Lyme Lives Here initiative.

Learn more about Global Lyme Alliance's patient support resources.

Key Topics in This Episode

Lyme disease recovery, Kristi Hellenbrand, Lyme disease remission, neurological Lyme disease, neuroborreliosis, Lyme disease in Georgia, chronic Lyme disease, Lyme disease misdiagnosis, wheelchair-bound Lyme patient, double-dose dapsone, Dr. Richard Horowitz, Horowitz protocol, Lyme disease memoir, Let Me Tell You a Secret She Makes It, Lyme disease treatment, Lyme disease rehabilitation, DNRS, Dynamic Neural Retraining System, neuroplasticity, nervous-system regulation, Lyme disease grief, chronic illness and family, Lyme disease caregivers, Global Lyme Alliance, Lyme Lives Here, Lyme disease advocacy, Tick Boot Camp, ILADS, and healing from Lyme disease.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich and Kristi discuss her personal recovery, her book, and how her experiences relate to Tick Boot Camp's four-phase healing framework.

They also discuss the possibility of bringing Kristi back for a longer conversation with Tick Boot Camp co-founder Matt Sabatello.

These LIVE from ILADS interviews are short-form conversations recorded on location, offering focused discussions with patients, advocates, clinicians, researchers, and innovators working to improve understanding of Lyme disease.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Explore the Tick Bite Blueprint for education about what to do after a tick bite.

Listen to interviews with Dr. Richard Horowitz to learn about his research and approaches to complex Lyme disease treatment.

Visit the Tick Boot Camp Podcast for more patient recovery stories, physician interviews, research conversations, and resources for the Lyme disease community.

This episode shares one patient's experience for educational purposes. It is not medical advice, and no individual treatment or recovery approach is guaranteed to work for everyone.

Could supporting the lymphatic system help people living with Lyme disease feel better, sleep more comfortably, and improve their overall well-being?

In this LIVE from ILADS interview, Tick Boot Camp welcomes back Freddie Kimmel, Lyme disease and metastatic cancer survivor, wellness technology educator, host of the Beautifully Broken Podcast, and representative of Flowpresso, for a fascinating conversation about lymphatic drainage, nervous system regulation, infrared heat, compression therapy, and emerging technologies being explored for recovery and wellness.

Rich reconnects with Freddie at the 2025 ILADS Conference nearly five years after their original Tick Boot Camp interview.

This time, Freddie introduces a technology that has become an important part of his professional work: Flowpresso, a full-body system combining sequential compression, heat, and deep-pressure stimulation.

Rich also shares his firsthand experience after trying the device at the conference.

He describes feeling deeply relaxed during the session, struggling to stay awake because of how comfortable he felt, and experiencing an unusually restful night of sleep afterward.

For patients navigating Lyme disease, persistent fatigue, limited mobility, sleep disturbances, and other complex symptoms, the conversation raises important questions about the role supportive wellness technologies might play alongside individualized medical care.

The central question: Can supporting circulation, relaxation, and lymphatic function become another useful part of a comprehensive Lyme disease recovery plan?

Freddie Kimmel Returns to Tick Boot Camp

Freddie Kimmel is no stranger to the Lyme disease community.

A survivor of Lyme disease, metastatic cancer, and mold-related health challenges, Freddie has spent years exploring the intersection of chronic illness, functional health, emerging technology, and personal transformation.

His original Tick Boot Camp appearance introduced listeners to his remarkable journey through serious illness and recovery.

Listen to Episode 162: The Lyme Polymath – An Interview with Freddie Kimmel to hear his personal story.

Since that conversation, Freddie has relocated from New York to Austin, Texas, where he has developed a wellness-focused community and continues exploring technologies intended to support health and recovery.

During this interview, he explains that his mission is to help people become healthier versions of themselves by combining information, technology, and practical knowledge.

One of the technologies that captured his attention is Flowpresso.

What Is Flowpresso?

Flowpresso is a full-body therapeutic system developed by New Zealand lymphatic specialist and entrepreneur Desiree De Spong.

The system combines three primary components:

• Sequential compression: Inflatable chambers apply pressure to different parts of the body in a coordinated sequence.
• Thermotherapy: Integrated heating elements provide warmth during treatment.
• Deep-pressure stimulation: The full-body garment creates a gentle, enveloping pressure sensation intended to promote comfort and relaxation.

Freddie describes the experience as being wrapped in a warm, comforting hug.

Unlike smaller compression devices that primarily target the legs, Flowpresso uses multiple garment sections covering the feet, legs, abdomen, arms, and portions of the upper body.

A typical session lasts approximately 40 minutes.

Flowpresso is marketed as an FDA-cleared Class II medical device intended for use under licensed healthcare practitioner supervision and within its cleared indications.

FDA clearance does not establish that Flowpresso treats Lyme disease, eliminates infections, or cures chronic illness.

Meet Flowpresso Founder Desiree De Spong

Freddie explains that his involvement with Flowpresso began after meeting Desiree De Spong through a mutual connection.

Desiree is a New Zealand-based lymphatic specialist, educator, and founder of Flowpresso.

Her background includes extensive experience in lymphatic health and therapeutic approaches involving compression and manual lymphatic techniques.

Freddie recalls their first conversation lasting approximately an hour.

He describes an immediate connection based on their shared interest in wellness, technology, and helping people navigate difficult health challenges.

That relationship eventually developed into a professional collaboration.

Today, Freddie helps introduce Flowpresso to practitioners, clinics, and wellness communities.

Learn more about the Flowpresso team and its founder.

Understanding the Lymphatic System

One of the most educational parts of this conversation focuses on a body system that often receives less attention than the heart, brain, or digestive tract.

The lymphatic system is a network of vessels, lymph nodes, and organs that helps maintain fluid balance, transport certain fats, and support immune function.

It collects excess fluid from tissues and returns that fluid to the bloodstream.

It also plays an important role in immune surveillance.

Lymph nodes contain immune cells that help recognize and respond to potentially harmful substances and infectious organisms.

Freddie compares the lymphatic system to a waste-management network that helps the body process material moving through tissues.

Although this analogy is useful for understanding some lymphatic functions, the lymphatic system is not a general-purpose detoxification machine, and increasing lymph flow has not been shown to eliminate Lyme bacteria or other infections.

Why Movement Matters for Lymphatic Flow

Unlike the cardiovascular system, which relies on the heart to circulate blood, the lymphatic system does not have one central pump.

Lymph movement is supported by several mechanisms, including:

• Skeletal muscle contractions
• Breathing-related pressure changes
• Contractions within lymphatic vessels
• One-way valves that help direct fluid movement
• Normal physical activity

Freddie explains that walking, standing, squatting, and other movements can contribute to lymph circulation.

This becomes especially relevant when discussing patients with severe fatigue or limited mobility.

Some people living with Lyme disease or other chronic illnesses may spend extended periods resting or may be unable to tolerate ordinary exercise.

The discussion explores whether supportive therapies could offer additional options for certain patients.

However, activity must be adapted to each person's medical condition and physical capacity. Patients with significant exercise intolerance, post-exertional symptom exacerbation, or other limitations may need specialized guidance rather than simply increasing movement.

Can Lymphatic Support Help Bedridden Lyme Patients?

Rich asks Freddie an important question:

What options might exist for people who are too sick to walk or exercise regularly?

Freddie explains that Flowpresso provides externally applied sequential compression while the person remains reclined.

Rather than requiring the patient to actively contract muscles throughout the session, the device applies pressure through inflatable garment sections.

This may be of interest to clinicians evaluating appropriate supportive care for people with mobility limitations.

However, there is currently insufficient evidence to conclude that Flowpresso improves Lyme disease outcomes, treats persistent infection, or accelerates recovery from Lyme disease.

Compression therapy also has medical contraindications and may be inappropriate for some patients.

Anyone considering this technology should consult a qualified healthcare professional, particularly if they have cardiovascular disease, blood-clotting concerns, significant swelling, neuropathy, or other complex medical conditions.

How Flowpresso's Sequential Compression Works

Freddie describes the Flowpresso system as a series of connected garment sections and inflatable chambers.

The chambers are positioned around different areas of the body.

During a session, they inflate and release in a coordinated pattern.

Freddie compares the process to gently squeezing a tube of toothpaste from one end toward the other.

The device uses overlapping compression chambers designed to create a progressive pressure wave.

According to Freddie, this wave moves through the system repeatedly during treatment.

The intent is to encourage fluid movement and provide a rhythmic, soothing sensation.

Sequential pneumatic compression is an established technology used in certain medical settings, including management of selected circulation and swelling conditions.

Whether a particular device is appropriate depends on its cleared indications, the patient's condition, and the clinician's assessment.

Infrared Heat and Thermotherapy

Another feature of Flowpresso is integrated heat.

Freddie explains that the device uses warming elements within the garment sections.

Unlike a traditional sauna, Flowpresso is not designed primarily to produce intense sweating.

Instead, the system provides warmth while the compression chambers operate.

Freddie believes this combination may help promote relaxation and complement the mechanical compression experience.

Heat can influence local circulation and comfort, but claims that infrared heat directly removes toxins, kills Lyme bacteria, or reverses chronic illness require stronger scientific evidence.

For patients with heat intolerance, autonomic dysfunction, impaired temperature sensation, or certain cardiovascular conditions, heat exposure may also present additional considerations.

Nervous System Regulation and the Parasympathetic Response

Freddie and Rich discuss the relationship between chronic illness, stress, sleep, and the autonomic nervous system.

The autonomic nervous system helps regulate functions such as heart rate, breathing, digestion, and vascular activity.

Its sympathetic and parasympathetic branches participate in the body's responses to activity, stress, and rest.

Freddie believes the combination of warmth, rhythmic compression, and deep-pressure stimulation may help some people feel calmer and more relaxed.

He describes Flowpresso as creating a sensation of comfort and security.

For patients experiencing persistent stress, poor sleep, or difficulty relaxing, that experience may be meaningful.

However, subjective relaxation does not necessarily demonstrate correction of autonomic dysfunction or improvement in the underlying causes of Lyme disease symptoms.

Rich Tries Flowpresso at ILADS

One of the most memorable moments in the interview is Rich's description of personally trying Flowpresso.

He explains that getting into the full-body garment initially felt unusual.

The device reminded him of being secured inside a spacesuit.

But once the session began, his experience changed.

Rich describes the rhythmic compression and warmth as extremely comfortable.

He felt so relaxed that staying awake became difficult.

Afterward, he reported feeling refreshed.

Most notably, Rich says he slept better that night than he had in a long time.

He had been traveling, adjusting to a different time zone, and experiencing disrupted sleep before the session.

Although he personally credits Flowpresso for helping him rest, a single experience cannot establish that the device caused the improvement.

Nevertheless, his reaction provides an interesting firsthand perspective on what a Flowpresso session feels like.

Could Flowpresso Improve Sleep?

Sleep becomes a major theme during the conversation.

Freddie describes research conducted in New Zealand involving first responders who participated in a series of Flowpresso sessions.

He reports that participants experienced substantial improvements in sleep-related outcomes.

The company has promoted findings involving improved sleep quality following repeated sessions.

These are company-reported results, and the specific study design, measurements, comparison groups, and peer-reviewed evidence should be evaluated before drawing conclusions about clinical effectiveness.

Rich's own experience raises an interesting question about whether relaxation-oriented technologies might help some patients sleep more comfortably.

Sleep is essential for cognitive function, emotional regulation, immune health, and overall recovery.

But better sleep after a wellness session does not demonstrate treatment of Lyme disease or removal of infectious organisms.

The Lymphatic System, Immune Function, and Chronic Illness

Freddie also discusses how lymphatic function relates to the immune system.

Lymph nodes help filter lymph and provide sites where immune cells encounter antigens and coordinate immune responses.

This relationship makes the lymphatic system an important part of normal immune function.

Freddie raises the possibility that chronic illness, reduced mobility, and other physiological stressors may influence lymphatic health.

He also introduces the concept of the exposome, which broadly refers to environmental exposures experienced throughout life.

The discussion touches on mold, infections, environmental substances, and other factors that may influence health.

These topics are complex and should not be reduced to a single explanation involving toxin accumulation or impaired lymphatic drainage.

Walking, Breathing, and Everyday Lymphatic Health

Beyond technology, Freddie emphasizes simple practices that can support normal physiology.

He highlights three areas:

Movement: Walking and appropriate physical activity engage muscles that help move lymphatic fluid.

Breathing: Changes in pressure during breathing contribute to fluid movement through the body.

Rest and relaxation: Adequate sleep and stress management support overall well-being.

Rich also references a previous conversation with Dr. Bill Rawls about the role walking played in his personal recovery journey.

The takeaway is not that every patient should follow the same exercise routine.

Rather, movement and other supportive practices should be individualized according to symptoms, physical capacity, and medical guidance.

Dry Brushing, Rebounding, and At-Home Wellness Practices

Rich and Freddie briefly discuss several practices commonly promoted in wellness communities.

These include dry brushing, rebounding, walking, breathing exercises, and massage-oriented techniques.

Some patients find these activities relaxing or enjoyable.

However, the scientific evidence supporting specific claims about detoxification or treatment of chronic infections varies considerably.

Dry brushing, for example, has not been established as a treatment for Lyme disease or as a reliable method of increasing deep lymphatic drainage.

Freddie emphasizes that no single device or technique should replace broader attention to everyday health habits.

Flowpresso for Recovery and Rehabilitation

Freddie explains that Flowpresso has attracted interest beyond the Lyme disease community.

He discusses potential applications in:

• Wellness and relaxation
• Physical recovery
• Selected rehabilitation settings
• Postoperative care
• Sports recovery
• Clinical environments where compression therapy may be appropriate

He describes introducing the technology to professional sports organizations and practitioners interested in recovery-oriented equipment.

The interview also references its use in settings involving breast implant removal and postoperative recovery.

These examples reflect the applications discussed by Freddie, not proof that the device produces superior surgical outcomes or replaces standard postoperative care.

Decisions about compression, drainage, and postoperative management should remain with qualified treating clinicians.

Freddie's Personal Connection to Lymphatic Health

Freddie's interest in lymphatic function is deeply personal.

During his experience with metastatic cancer, he underwent extensive surgery involving lymph nodes in his abdomen.

He describes a retroperitoneal lymph node dissection and numerous surgical clips remaining from that procedure.

Those experiences influenced his curiosity about the lymphatic system and the potential role of compression-based therapies.

He explains that he did not fully appreciate the system's complexity during his earlier health challenges.

Now, lymphatic education has become a central part of his work.

His experiences provide valuable context for understanding his enthusiasm, while his personal results and observations should be distinguished from controlled clinical evidence.

Is Flowpresso Available for Home Use?

Freddie explains that Flowpresso is primarily a practitioner-oriented system.

He discusses how clinics may offer sessions and how some patients with mobility limitations may explore home-based access under appropriate professional supervision.

Availability varies by location.

The company maintains a directory of participating providers.

Find a Flowpresso provider near you.

Healthcare professionals interested in learning more can visit the official Flowpresso website.

Because the device is intended for supervised use, patients should discuss suitability, contraindications, and realistic expectations with a qualified healthcare professional.

What Research Is Still Needed?

While the interview highlights enthusiasm about Flowpresso, important questions remain.

For Lyme disease patients specifically, research would need to investigate whether this technology produces measurable benefits beyond relaxation or general comfort.

Potential research questions include:

• Does Flowpresso improve validated measures of sleep quality?
• Can it help selected patients experiencing clinically significant swelling?
• Does it improve quality of life in people with limited mobility?
• How do outcomes compare with established compression therapies?
• Which patients are most likely to benefit?
• What adverse effects or contraindications should clinicians consider?
• Are any benefits sustained after treatment sessions end?

Controlled clinical trials would be needed to determine whether Flowpresso offers disease-specific benefits for Lyme disease or persistent symptoms following treatment.

About Freddie Kimmel

Freddie Kimmel is a wellness technology educator, speaker, podcaster, and survivor of metastatic cancer, Lyme disease, and mold-related health challenges.

He hosts the Beautifully Broken Podcast, where he explores health, recovery, wellness technology, and personal transformation.

Before entering the wellness field, Freddie worked professionally in musical theater, including performances in major theatrical productions.

His personal health experiences inspired him to explore functional health, emerging technologies, and approaches intended to support overall well-being.

Freddie currently works with Flowpresso, helping educate practitioners and consumers about lymphatic health and compression-based wellness technology.

Hear his original Tick Boot Camp interview: Episode 162: The Lyme Polymath – Freddie Kimmel.

Key Takeaways

• The lymphatic system plays important roles in fluid balance and immune function.
• Movement, breathing, and contractions within lymphatic vessels contribute to normal lymph circulation.
• Flowpresso combines sequential compression, heat, and deep-pressure stimulation.
• Rich personally experienced substantial relaxation and reported improved sleep after trying the device.
• Freddie believes supportive wellness technologies may have a role in individualized recovery plans.
• Flowpresso is not an established treatment for Lyme disease or persistent Lyme-related symptoms.
• Patients should evaluate potential benefits, risks, and contraindications with qualified healthcare professionals.
• More independent clinical research is needed to determine the device's effectiveness for specific health conditions.

Key Topics in This Episode

Freddie Kimmel, Flowpresso, Lyme disease lymphatic drainage, lymphatic system, chronic Lyme disease, lymphatic health, Lyme disease recovery, infrared therapy, sequential compression therapy, pneumatic compression, lymphatic drainage suit, thermotherapy, nervous system regulation, parasympathetic nervous system, Lyme disease fatigue, Lyme disease sleep problems, chronic illness recovery, wellness technology, Desiree De Spong, Beautifully Broken Podcast, metastatic cancer survivor, Lyme disease rehabilitation, sleep quality, physical recovery, functional health, ILADS, and Tick Boot Camp.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich reconnects with Freddie Kimmel nearly five years after their original Tick Boot Camp interview.

They explore Freddie's latest work with Flowpresso, the fundamentals of lymphatic function, compression therapy, infrared heat, and the relationship between relaxation and sleep.

Rich also shares his firsthand experience trying Flowpresso at the conference.

The two discuss the possibility of a future long-form conversation examining lymphatic health, lifestyle practices, and the technology in greater detail.

Explore all Tick Boot Camp LIVE from ILADS interviews.

Resources Mentioned

Flowpresso Official Website

Learn about the technology, its intended uses, and the company behind it.

Find a Flowpresso Provider

Explore the company's provider directory to identify participating locations.

Desiree De Spong

Learn more about the founder of Flowpresso and her work in lymphatic education.

Freddie Kimmel – Beautifully Broken Podcast

Explore Freddie's podcast and wellness education resources.

More from Tick Boot Camp

Episode 162: The Lyme Polymath – An Interview with Freddie Kimmel

Discover Freddie's personal story of surviving metastatic cancer, Lyme disease, and mold-related health challenges.

Dr. Bill Rawls, MD – Lyme Disease and Natural Healing

Explore Dr. Rawls' perspective on Lyme disease recovery, lifestyle practices, herbal medicine, and supporting overall health.

Tick Boot Camp LIVE from ILADS

Watch and listen to interviews with doctors, researchers, advocates, and innovators discussing Lyme disease and tick-borne illness.

Tick Boot Camp Podcast

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What happens when seven years of undiagnosed Lyme disease, debilitating symptoms, and medical dismissal push someone to the point of losing hope—and that person eventually becomes a voice of hope for others?

In this LIVE from ILADS interview, Tick Boot Camp welcomes Tanya, host of Lyme and Beyond with Tanya, for an emotional and inspiring conversation about Lyme disease recovery, medical gaslighting, mental health, suicidal thoughts, patient advocacy, and the power of sharing stories of healing.

After spending years searching for answers, Tanya experienced severe physical and cognitive symptoms that disrupted her independence and quality of life. Repeatedly told that her symptoms were caused by stress or psychological problems, she reached a point where she struggled to imagine continuing her life without answers.

But Tanya's story didn't end there.

Her recovery journey eventually inspired her to become a Lyme disease advocate and podcast host, creating a platform dedicated to sharing stories of people who have experienced meaningful healing.

Today, her mission is to remind people living with Lyme disease and other tick-borne illnesses that they are seen, heard, understood, and not alone.

This episode explores why finding the right community, hearing recovery stories, and discovering a personal reason to keep moving forward can make such a meaningful difference during chronic illness.

Meet Tanya: Host of Lyme and Beyond with Tanya

Tanya brings a unique perspective to the Lyme disease community.

She describes approximately 13 years of personal experience navigating Lyme disease and many additional years supporting and advocating for patients.

Her podcasting journey began when her former Lyme disease physician suggested they start a podcast together.

At the time, Tanya barely knew what a podcast was.

Nevertheless, she agreed to try something completely outside her comfort zone.

After approximately three and a half years of podcasting with her former physician, she launched her independent show, Lyme and Beyond with Tanya.

Her mission has remained consistent throughout that journey:

Give hope and inspiration to people living with Lyme disease.

Unlike podcasts that primarily focus on emerging treatments, medical research, or ongoing patient struggles, Tanya emphasizes interviews with people who have experienced meaningful recovery.

She wants listeners to hear from individuals who were once bedridden, wheelchair-bound, or severely debilitated but eventually regained their independence and quality of life.

These stories help demonstrate that illness does not necessarily define someone's future.

Seven Years of Medical Gaslighting

Tanya describes spending approximately seven years without receiving an explanation that adequately accounted for her symptoms.

During that time, she repeatedly heard suggestions that she was simply working too much, experiencing excessive stress, or dealing with psychological problems.

She recalls being told she needed therapy rather than additional medical investigation.

Meanwhile, her physical and cognitive symptoms continued.

She experienced significant pain and memory problems that interfered with everyday activities.

At times, she became disoriented while driving.

She describes returning from the grocery store and forgetting that she had groceries in her vehicle.

These experiences were frightening, frustrating, and increasingly isolating.

For Tanya, the absence of a clear diagnosis made it difficult to know what she was fighting or how to move forward.

Her story highlights why patients with persistent, unexplained symptoms need thoughtful medical evaluation, compassion, and a willingness to investigate possible causes.

When Chronic Illness Leads to Suicidal Thoughts

One of the most important moments in this conversation occurs when Tanya openly discusses experiencing suicidal thoughts during her illness.

She explains that years of physical suffering, uncertainty, and feeling dismissed by healthcare professionals gradually eroded her hope.

She had previously felt ashamed of this part of her story.

Today, she shares it because she wants other patients experiencing similar emotional distress to understand that they are not alone and that support is available.

Tanya also reflects on the loss of her brother, who died from a health condition at age 22.

She was only 19 at the time.

During her darkest moments, she struggled with thoughts about how her family would respond to another loss.

Eventually, her niece and nephew became especially important sources of connection and motivation.

They helped her reconnect with reasons to keep seeking help and working toward recovery.

Suicidal thoughts are a serious health concern, not a personal failure or something patients should have to overcome through determination alone. Anyone experiencing these thoughts deserves compassionate, immediate support from qualified professionals and trusted people.

In the United States, the 988 Suicide & Crisis Lifeline is available by calling or texting 988.

Finding Your Why During Lyme Disease Recovery

Tanya emphasizes the importance of finding a personal reason to continue moving forward.

For her, that reason was her niece and nephew.

Other patients may find meaning in relationships, creative interests, future goals, faith, community, or the possibility of rebuilding a life they value.

Tanya describes how reconnecting with the people she loved helped her move through a particularly difficult period.

Her experience illustrates the importance of emotional support alongside appropriate medical care.

A person's reasons for living can provide meaningful motivation, but they are not a substitute for professional mental health treatment when needed.

Why Lyme Recovery Stories Matter

Rich and Tanya discuss the value of hearing stories from people who have experienced significant improvement after Lyme disease.

For someone who has been sick for months or years, it can be difficult to imagine a different future.

Symptoms may change unpredictably.

Treatment may involve setbacks.

Financial pressures can become overwhelming.

Relationships and careers may be affected.

Hearing from someone who once faced similar challenges and eventually experienced meaningful recovery can help restore a sense of possibility.

This is the foundation of Tanya's podcast.

She intentionally features guests who can share what life looked like during their illness, what changed during recovery, and what their lives look like now.

Her goal isn't to suggest that every patient will follow the same path.

It's to offer examples of what may be possible.

Different Lyme Podcasts, Different Perspectives

One of the central themes of this interview is collaboration within the Lyme disease podcasting community.

Rich explains that Tick Boot Camp does not view other Lyme disease podcasts as competitors.

Instead, different platforms can serve different needs.

Two podcasters might interview the same guest and uncover entirely different parts of that person's experience.

A patient's perspective may also change depending on where they are in their journey.

Someone newly diagnosed may need basic education and guidance.

Someone undergoing treatment may be looking for discussions about symptoms, treatment decisions, or navigating setbacks.

Someone rebuilding their life may benefit from conversations about rehabilitation, relationships, emotional recovery, and purpose.

Tanya's podcast adds another valuable voice to this broader educational community.

She also shares that her listeners regularly recommend guests they have discovered through Tick Boot Camp.

The exchange of stories and resources helps both communities.

The goal isn't to build competing audiences. It's to help patients find the information, encouragement, and community they need.

Why Women's Perspectives Matter in Lyme Disease

Rich and Tanya also discuss the importance of bringing different lived experiences into Lyme disease conversations.

Women may face concerns related to fertility, pregnancy, breastfeeding, family planning, caregiving, and other aspects of health that deserve thoughtful attention.

Tanya acknowledges that she cannot personally speak to every experience.

She shares that she was unable to have children and that certain topics, including mold-related illness, were not central to her own journey.

Rather than attempting to provide answers about experiences she hasn't lived, she welcomes guests who can offer those perspectives.

Her approach emphasizes curiosity, humility, and continued learning.

The conversation reinforces why Lyme disease education benefits from a diversity of patient voices and qualified medical experts.

The Emotional Isolation of Lyme Disease

Tanya describes Lyme disease as an intensely isolating experience.

Even though she had supportive family members and friends, she often felt alone.

That distinction is important.

Someone can be surrounded by people who care about them and still feel misunderstood.

Family members may struggle to understand symptoms they cannot see.

Friends may not recognize how much energy ordinary activities require.

Patients may find it exhausting to repeatedly explain their experiences.

Connecting with others who have lived through similar challenges can provide a different kind of support.

Tanya believes that shared understanding is one of the most valuable aspects of the Lyme disease community.

Faith, Grief & Finding Purpose

Faith is another important part of Tanya's personal story.

She openly discusses experiencing a complicated relationship with God during her illness.

At times, she questioned why she was suffering and struggled to reconcile her experience with her beliefs.

Over time, her faith became an important source of meaning and comfort.

She now views her advocacy as part of the purpose she discovered through her recovery journey.

Tanya is grateful for the friendships, relationships, and opportunities that emerged from her experiences.

She also acknowledges how painful and financially difficult the journey was.

Her story shows that gratitude and grief can coexist.

A person can find meaning after illness without minimizing what they endured.

And patients who do not find a larger purpose in their illness deserve the same compassion, dignity, and support.

Choosing Healthy Lyme Disease Support Communities

Toward the end of the interview, Rich and Tanya discuss the influence of online Lyme disease support groups.

Both recognize how valuable these communities can be.

They connect people who might otherwise feel isolated and provide opportunities to exchange experiences, resources, and encouragement.

However, Tanya also cautions that not every group will be helpful for every person.

She raises concerns about medical misinformation, unsupported treatment recommendations, and interactions that leave patients feeling more frightened or discouraged.

Her advice is to be selective.

Rather than joining every available group, consider participating in a few communities and evaluating how they affect your well-being.

Ask yourself:

• Do I feel heard and respected?
• Are different patient experiences welcomed?
• Are medical claims presented responsibly?
• Does the community encourage appropriate professional care?
• Can people share difficult emotions without being judged?
• Do I leave feeling supported rather than overwhelmed?

Tanya encourages patients to seek communities that provide validation, accurate information, and constructive support.

Positivity Without Dismissing Pain

Tanya emphasizes positivity throughout the interview, but her own story makes clear that recovery can involve profound suffering.

She knows what it means to experience fear, isolation, depression, and uncertainty.

Her message is not that patients must feel positive every day.

She acknowledges that difficult days are part of the experience.

Instead, she encourages people to look for sources of encouragement when they can and to remember that a difficult day does not necessarily determine what comes next.

It's also important to recognize that symptom flares do not automatically indicate healing, and patients should discuss new or worsening symptoms with their healthcare professionals.

Hope is most meaningful when it leaves room for honesty.

How Podcasts Can Become Virtual Mentors

Rich explains that Tick Boot Camp frequently encourages people to learn from recovery stories.

A patient may not have access to a personal mentor who has navigated Lyme disease.

But listening to someone describe their experiences can provide a form of virtual mentorship.

Patients can learn about questions to ask, resources to investigate, and approaches to discuss with their clinicians.

They may also discover people whose experiences resemble their own.

Tanya's podcast is designed to provide that kind of connection.

By sharing recovery stories, she hopes to offer listeners both emotional validation and examples of people who have rebuilt their lives.

Why the Lyme Community Is Stronger Together

Rich and Tanya close their conversation by emphasizing cooperation rather than competition.

No single podcast, advocacy organization, support group, or medical professional can meet every patient's needs.

The Lyme disease community benefits when people share resources, amplify one another's work, and introduce patients to new perspectives.

For Tanya, meeting fellow advocates and podcasters at ILADS is especially meaningful.

Many of these relationships began online.

Now she has opportunities to meet those people face-to-face, exchange ideas, and strengthen the community.

What began as an unexpected invitation to start podcasting has become an important part of her life.

About Tanya and Lyme and Beyond with Tanya

Tanya is a Lyme disease survivor, patient advocate, and host of Lyme and Beyond with Tanya, a podcast dedicated to sharing stories of recovery, hope, and inspiration.

After years of unexplained symptoms and medical dismissal, Tanya began advocating for people affected by Lyme disease and other tick-borne illnesses.

Her podcasting career began through a collaboration with her former Lyme disease physician.

She later launched her own show to focus on individuals who have experienced meaningful recovery and reclaimed their lives after illness.

Her work emphasizes patient validation, community support, mental health awareness, and the belief that healing is possible.

Listen to Lyme and Beyond with Tanya on Apple Podcasts or Spotify.

Key Takeaways

• Medical dismissal and prolonged diagnostic uncertainty can have serious physical and emotional consequences.
• Mental health challenges, including suicidal thoughts, deserve compassionate attention and appropriate professional support.
• Recovery stories can help patients imagine possibilities beyond their current circumstances.
• Different Lyme disease podcasts offer valuable perspectives and serve different needs.
• Support communities should provide validation without spreading medical misinformation.
• Finding meaningful connections and personal goals can support emotional resilience.
• Difficult days do not erase progress or determine the future.
• The Lyme disease community is stronger when advocates, patients, clinicians, and podcasters collaborate.

Key Topics in This Episode

Lyme and Beyond with Tanya, Lyme disease recovery stories, Lyme disease podcast, chronic Lyme disease, Lyme disease medical gaslighting, undiagnosed Lyme disease, Lyme disease mental health, Lyme disease depression, suicidal thoughts and chronic illness, Lyme disease advocacy, Lyme disease support groups, Lyme disease isolation, finding hope with Lyme disease, Lyme disease healing stories, patient empowerment, Lyme disease community, women and Lyme disease, chronic illness and faith, Lyme disease recovery inspiration, ILADS, and Tick Boot Camp.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich welcomes Tanya to Tick Boot Camp for a conversation about her personal Lyme disease journey, the creation of Lyme and Beyond with Tanya, and why multiple patient-centered podcasts can work together to educate and support the community.

The interview also explores medical gaslighting, emotional health, finding purpose, and choosing supportive online communities.

Explore all Tick Boot Camp LIVE from ILADS interviews.

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Can a Lyme disease patient who spent three years bedridden help change federal health policy for millions of people?

In this LIVE from ILADS interview, Tick Boot Camp reunites with Meghan Bradshaw, MPH, Lyme disease survivor, public health advocate, and leader at Center for Lyme Action, for an inspiring conversation about Lyme disease advocacy, federal research funding, proposed legislation, and the power of turning personal suffering into lasting change.

After years of misdiagnosis and debilitating tick-borne illness, Meghan spent approximately three years bedridden, underwent numerous orthopedic surgeries, and experienced profound losses of independence and mobility.

Yet while rebuilding her body, she returned to school, pursued a career in public health, and became a federal lobbyist working to prevent other patients from experiencing the same suffering.

At the time of this October 2025 interview, Meghan served as Government Relations Manager at Center for Lyme Action. She subsequently became the organization's Executive Director in January 2026.

During this conversation, Meghan discusses how Center for Lyme Action grew to more than 10,000 advocates, helped secure over $500 million in cumulative federal funding increases, and began advancing legislative proposals that could improve Lyme disease prevention, diagnostics, research, and public health policy.

Her message is powerful: You don't have to be healthy, wealthy, politically connected, or even able to leave your bed to help change the future of Lyme disease.

For the complete story of Meghan's personal battle with Lyme disease, listen to Episode 196: The Bionic Woman – An Interview with Meghan Bradshaw.

From Lyme Disease Patient to Federal Lobbyist

Before becoming a national health policy advocate, Meghan Bradshaw was a patient fighting to survive.

She describes experiencing devastating physical and emotional consequences after years of misdiagnosis and delayed treatment.

At her worst, Meghan spent approximately three years bedridden.

Her illness was associated with extensive joint damage, repeated surgeries, and significant loss of mobility.

She describes undergoing major orthopedic procedures approximately every three months during part of her recovery.

Her body was being reconstructed with titanium and cobalt.

But as she explains to Rich, the emotional consequences were equally profound.

She had lost her independence, autonomy, and much of the life she previously recognized.

Still, she believed she could build a meaningful future.

That belief eventually led her toward public health and federal policy.

Hear Meghan's complete journey in The Bionic Woman – Episode 196.

Why Meghan Went Back to School During Lyme Treatment

While recovering from surgery and undergoing treatment, Meghan made a decision that would change her life.

She returned to school.

As her cognitive symptoms improved, she became increasingly interested in understanding why so many patients experienced similar problems with diagnosis, treatment, and access to care.

She didn't believe those patterns were simply coincidences.

She wanted to understand the underlying systems and identify opportunities to change them.

Meghan pursued graduate education in public health, developing the knowledge and skills needed to address Lyme disease through research, advocacy, and policy.

For Meghan, education became more than a career investment.

It became a source of purpose during recovery.

She wanted to help build a healthcare system in which future patients wouldn't have to endure the same suffering.

What Is Center for Lyme Action?

Center for Lyme Action is a national 501(c)(4) nonprofit organization dedicated to increasing federal funding and advancing policy solutions for Lyme disease and other tick-borne illnesses.

Its work focuses on strengthening the federal government's ability to:

• Prevent tick-borne diseases
• Improve disease detection and diagnosis
• Support research into better treatments
• Expand public health surveillance
• Improve education and awareness
• Fund scientific innovation
• Respond to emerging vector-borne health threats

As a 501(c)(4) organization, Center for Lyme Action can engage extensively in lobbying activities.

Meghan explains that she works directly with members of Congress, congressional staff, and federal agencies to communicate the needs of patients and the scientific community.

The goal is to translate patient experiences into federal policies and funding decisions that can improve public health.

Meet Center for Lyme Action Founder Bonnie Crater

To understand how this advocacy movement began, listen to Episode 378: Center for Lyme Action – An Interview with Bonnie Crater.

In that conversation, Tick Boot Camp explores the organization's origins, mission, and strategy for increasing federal investment in Lyme disease and tick-borne illness research.

Together, Bonnie's and Meghan's interviews illustrate how a growing network of advocates is working to turn patient experiences into measurable policy progress.

More Than $500 Million in Federal Funding Increases

One of the most significant milestones discussed in this interview is Center for Lyme Action's role in securing increased federal investment.

Meghan reports that the organization's collective advocacy efforts helped generate more than $500 million in cumulative increases in federal funding for Lyme disease and other tick-borne conditions over several years.

This represents funding increases across federal programs, not a single grant or one research project.

Federal funding supports many different activities, including scientific research, prevention, public health infrastructure, surveillance, and efforts to develop better diagnostics and treatments.

Meghan credits the organization's advocates, partner organizations, researchers, clinicians, and congressional allies for helping make this progress possible.

She believes these achievements demonstrate what coordinated, persistent advocacy can accomplish.

A National Network of More Than 10,000 Lyme Advocates

Center for Lyme Action's advocacy network had grown to more than 10,000 participants at the time of this interview.

Meghan explains that advocates represented all 50 states, Washington, D.C., and Puerto Rico.

These participants help communicate directly with elected officials about how Lyme disease and other tick-borne illnesses affect their communities.

Some share personal stories.

Others participate in letter-writing campaigns.

Some meet with congressional offices.

Others join virtual advocacy events.

Together, these voices help demonstrate that tick-borne diseases are national public health concerns requiring sustained attention.

How Lyme Patients Can Advocate From Bed

One of the most important parts of this conversation addresses people who are still severely ill.

Rich asks how someone who is bedridden, cognitively impaired, or struggling with overwhelming fatigue can contribute to advocacy.

Meghan understands that challenge personally.

She knows what it feels like to have limited energy and little capacity for additional responsibilities.

That's why Center for Lyme Action works to make participation accessible.

Advocates can use prepared letters, talking points, scripts, and virtual opportunities rather than having to develop everything themselves.

For example, a patient may be able to enter basic contact information into an advocacy campaign and send a prepared message to their elected representatives.

Meghan emphasizes that people shouldn't have to expend precious energy figuring out how to communicate complicated policy issues.

The organization works to make those steps easier.

Even a small action can contribute to a much larger collective effort.

Explore Center for Lyme Action's advocacy opportunities.

Five Federal Legislative Priorities Discussed at ILADS

Meghan highlights five legislative initiatives being pursued at the time of the October 2025 interview.

These proposals address different aspects of the tick-borne disease crisis, from federal research funding to public health technology and food allergen labeling.

The proposals discussed were not all enacted laws. Their status may have changed since the interview.

1. Kay Hagan Tick Act Reauthorization

The Kay Hagan Tick Act was originally signed into law in 2019 to strengthen the federal response to vector-borne diseases.

The legislation supports coordinated efforts involving research, surveillance, prevention, and public health programs.

Meghan explains that reauthorization was among Center for Lyme Action's legislative priorities.

Continued authorization and appropriations can help sustain the infrastructure needed to respond to Lyme disease and other tick-borne threats.

2. STAMP Act: A Postage Stamp Supporting Lyme Research

The proposed STAMP Act would establish a special postage stamp intended to generate additional funding for Lyme disease and tick-borne disease research.

Meghan describes the concept as a way to direct proceeds from stamp purchases toward research supported through the National Institutes of Health.

The idea creates another potential mechanism for supporting scientific investigation while increasing public awareness.

3. BITE Act: Tick-Borne Disease Risk Alerts

The proposed BITE Act would explore using technology to alert people when they are entering areas with elevated vector-borne disease risks.

Meghan compares the concept to the alerts people already receive for severe weather or other emergencies.

Imagine receiving a notification on your phone warning that your current area presents increased risk for tick-borne or mosquito-borne disease exposure.

Such a system could also provide practical prevention guidance.

The goal would be to help people make informed decisions before exposure occurs.

4. Tick Identification Pilot Program Act

The proposed Tick Identification Pilot Program Act would establish grants supporting state-level tick identification services.

Meghan describes a system in which someone could photograph a tick and submit the image to a participating state public health agency.

Under the proposal discussed, a public health professional would respond within approximately 72 hours with information about the tick species and diseases it may carry.

This could help patients and clinicians better understand potential exposure risks and determine appropriate next steps.

Tick identification alone cannot determine whether a person has been infected, but it may provide useful information for clinical evaluation.

5. Alpha-Gal Allergen Inclusion Act

The proposed Alpha-Gal Allergen Inclusion Act would improve food labeling for people living with alpha-gal syndrome.

Alpha-gal syndrome is a potentially serious allergic condition associated with certain tick bites.

Affected individuals may react to mammalian-derived ingredients, making food and product labeling particularly important.

Meghan explains that clearer labeling could reduce the burden of deciphering unfamiliar ingredient names and help people avoid potentially dangerous exposures.

Why Federal Policy Matters to Lyme Patients

For someone living with chronic symptoms, congressional legislation may initially feel far removed from daily life.

Meghan explains why the connection is much closer than it appears.

Federal decisions influence funding for research, public health programs, disease surveillance, diagnostic innovation, prevention, and clinical studies.

These decisions can affect the resources available to researchers and the tools eventually available to clinicians and patients.

Meghan's own experiences shaped her understanding of what was missing from the healthcare system.

She believes stronger policies, better diagnostics, and greater clinical awareness could have changed the trajectory of her illness.

Now she is working to make those resources more accessible to others.

Turning Pain Into Purpose

Rich and Meghan have known each other for years.

Their relationship began when Meghan was sharing her personal Lyme disease story and developing her voice as an advocate.

Since then, Rich has watched her return to school, expand her public health expertise, and become a national policy leader.

During the interview, he reflects on how meaningful it has been to witness younger advocates transform their experiences into service.

Meghan describes advocacy as part of her own healing.

She cannot undo everything that happened to her.

But she can work to change the systems that contributed to her suffering.

That gives her a sense of agency and purpose.

She explains that illness clarified what matters most to her and helped shape the work she wants to do with her life.

Rebuilding a Life After Severe Lyme Disease

Meghan is candid about the fact that her life did not simply return to what it was before illness.

She experienced lasting physical consequences and underwent extensive orthopedic reconstruction.

Her recovery required adapting to a different reality.

But she also came to believe that a changed life could still be meaningful.

Returning to school, developing her career, and serving other patients helped her rebuild a sense of identity.

Her story challenges the idea that recovery must mean returning to every aspect of a person's previous life.

For some people, healing also involves discovering new possibilities, new roles, and new ways to contribute.

Why Every Advocate's Talent Matters

Meghan emphasizes that there is no single correct way to advocate.

Some people are gifted storytellers.

Others understand science.

Some are experienced communicators, organizers, or healthcare professionals.

Others have skills in fundraising, research, education, or public policy.

Meghan mentions advocates including Ali Moresco, Nicole Bell, and Lindsay Keys as examples of people bringing different talents to the community.

Her message is that progress becomes possible when people contribute what they can.

Not everyone needs to become a lobbyist.

Not everyone needs to speak publicly.

And not everyone needs to devote their career to advocacy.

There is value in every contribution.

Patient Stories Can Influence Congress

Meghan shares that many congressional offices have personal connections to Lyme disease or other tick-borne illnesses.

During meetings, lawmakers or staff members have sometimes revealed that they or close family members have been affected.

Those experiences can help create understanding across political and geographic differences.

Meghan believes productive, respectful conversations are essential.

The objective is not simply to demand attention.

It is to help elected officials understand the scale of the problem, the gaps in the current response, and the opportunities for meaningful action.

That includes explaining what patients are experiencing and why federal investments matter.

Why Bipartisan Lyme Advocacy Matters

Tick-borne diseases do not distinguish between political affiliations.

They affect people across the country, regardless of party, income, age, or background.

Center for Lyme Action emphasizes a bipartisan approach to federal advocacy.

Meghan's work involves communicating with members of Congress and federal officials who may hold different political views but share concerns about public health, scientific research, and disease prevention.

Building those relationships can help create durable support for Lyme disease priorities.

The goal is progress that can continue across changing political administrations and congressional sessions.

Two Ways Patients Can Contribute to Progress

Rich highlights two accessible opportunities that Tick Boot Camp frequently encourages patients to explore.

1. Contribute to MyLymeData

The MyLymeData patient-powered research registry allows patients to share information about their experiences with Lyme disease.

Aggregated patient-reported information can help researchers better understand symptoms, diagnostic challenges, treatment experiences, and quality of life.

2. Participate in Center for Lyme Action

Through Center for Lyme Action, patients and supporters can participate in advocacy campaigns, communicate with elected officials, and help support efforts to increase federal investment.

Meghan explains that membership is available, but paid membership is not required to participate in the organization's advocacy activities.

These opportunities allow people to contribute through either patient-powered research or federal advocacy—or both.

The Future of Lyme Disease Research and Treatment

Meghan is optimistic about the momentum building around Lyme disease.

She points to increased federal funding, expanding advocacy networks, growing attention from policymakers, and proposed legislation as signs of meaningful progress.

She also emphasizes that significant work remains.

Patients still need better diagnostics.

Researchers need greater support.

Clinicians need improved tools.

And people experiencing persistent symptoms need more effective, evidence-based treatment options.

The progress Meghan describes does not mean these problems have been solved.

It means advocates are helping create conditions in which better solutions may become possible.

About Meghan Bradshaw, MPH

Meghan Bradshaw, MPH is a Lyme disease and tick-borne illness advocate and Executive Director of Center for Lyme Action.

At the time of this October 2025 interview, she served as the organization's Government Relations Manager. She became Executive Director in January 2026.

After experiencing severe tick-borne illness, years of misdiagnosis, and extensive orthopedic surgeries, Meghan dedicated herself to improving the systems responsible for prevention, diagnosis, treatment, and research.

She pursued graduate education in public health and has participated in federal tick-borne disease policy and research initiatives.

Her advocacy includes working with Congress, federal agencies, patient organizations, researchers, and clinicians to increase federal investment and strengthen the national response to Lyme disease and other tick-borne illnesses.

Read more about Meghan's personal story and Center for Lyme Action's mission.

Key Topics in This Episode

Meghan Bradshaw, Center for Lyme Action, Lyme disease advocacy, Lyme disease federal funding, $500 million Lyme funding, Lyme disease research funding, Lyme disease legislation, Kay Hagan Tick Act, STAMP Act, BITE Act, Tick Identification Pilot Program Act, Alpha-Gal Allergen Inclusion Act, alpha-gal syndrome, Lyme disease prevention, tick-borne disease public policy, Lyme disease Congress, federal Lyme research, Lyme disease patient advocacy, Lyme disease recovery, patient-powered research, MyLymeData, Lyme disease misdiagnosis, tick-borne disease research, public health, Lyme disease clinical trials, ILADS, and Tick Boot Camp.

About This LIVE from ILADS Interview

This conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Rich and Meghan reconnect nearly five years after their first Tick Boot Camp interview.

They reflect on their longstanding friendship, their recent participation in a Lyme awareness fashion event, Meghan's personal transformation, and the expanding role of Center for Lyme Action in federal policy.

The discussion highlights how patient experiences can influence research priorities, legislation, public health funding, and the future of Lyme disease care.

Explore all Tick Boot Camp LIVE from ILADS interviews.

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Episode 196: The Bionic Woman – An Interview with Meghan Bradshaw

Hear Meghan's full personal story, including her devastating Lyme disease journey, extensive surgeries, recovery, and the experiences that inspired her to become a national advocate.

Episode 378: Center for Lyme Action – An Interview with Bonnie Crater

Meet Center for Lyme Action founder Bonnie Crater and learn about the organization's origins, mission, and strategy for increasing federal funding for Lyme disease and tick-borne illness research.

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Explore more in-person conversations with leading doctors, researchers, advocates, and innovators advancing Lyme disease awareness, science, and treatment.

Tick Boot Camp Podcast

Discover patient recovery stories and conversations with the people working to improve Lyme disease education, research, treatment, and advocacy.

Legislative proposals and funding figures are discussed in their historical context. For current bill status and advocacy opportunities, consult Center for Lyme Action and official congressional sources.

What if some of the depression, anxiety, brain fog, cognitive dysfunction, OCD, speech changes, and other neuropsychiatric symptoms experienced by people with Lyme and other vector-borne diseases involve more than the infection itself?

In this episode of the Tick Boot Camp Podcast, Matt Sabatello sits down with Dr. Lindsey Wells, ND, a Connecticut naturopathic physician whose work focuses heavily on children with Lyme Disease, PANS/PANDAS, autism spectrum disorder, neurodevelopmental conditions, and other vector-borne diseases.

The centerpiece of the conversation is Dr. Wells' newly published research, “Folate Receptor Alpha Autoantibodies in Vector-Borne Disease Populations.”

Her study explored an intriguing question: could some people with Lyme disease, Bartonella, Babesia, or other vector-borne infections also have an immune-mediated problem that prevents enough folate from reaching the brain?

The findings open an important new area of investigation.

What Are Folate Receptor Alpha Autoantibodies?

Folate is essential for neurological function, neurotransmitter production, mitochondrial health, methylation, and numerous other biological processes.

But having adequate folate in the bloodstream does not necessarily mean enough folate is reaching the brain.

Dr. Wells explains how folate receptor alpha autoantibodies, commonly abbreviated FRAAs, can interfere with the folate receptor responsible for helping transport folate across the blood-brain barrier.

These autoantibodies can either block folate from attaching to the receptor or bind to the receptor and interfere with its normal function.

The result may contribute to a condition known as cerebral folate deficiency, where folate availability inside the central nervous system is inadequate despite seemingly normal blood levels.

A Surprising Finding in Vector-Borne Disease Patients

Dr. Wells and her colleagues examined patients with confirmed evidence of vector-borne infections.

Their study found that 61.8% of the vector-borne disease-positive patients tested positive for folate receptor alpha autoantibodies.

That finding immediately raises bigger questions.

Are vector-borne infections contributing to the development or elevation of these autoantibodies?

Can Lyme or another infection be treated while FRAAs remain elevated?

Could persistent FRAAs contribute to symptoms that patients and clinicians continue attributing entirely to infection?

The Borrelia Finding That Caught Dr. Wells' Attention

One of the most intriguing findings involved the soluble folate receptor, an abnormal finding seen much less frequently than standard binding or blocking FRAAs.

Eight patients in the study were positive for soluble folate receptor.

Seven of those eight had confirmed evidence of Borrelia species infection, while the remaining patient had an indeterminate result involving relapsing fever Borrelia.

Dr. Wells discusses why this observation raises questions about whether Borrelia infection, immune activation, inflammation, or another biological mechanism could influence folate receptor function.

Bartonella, PANS/PANDAS and Severe Neuropsychiatric Symptoms

The conversation also goes deep into Bartonella.

In Dr. Wells' clinical experience, Bartonella frequently appears in some of the more complex children she treats with PANS/PANDAS, particularly those experiencing symptoms such as:

• Severe anxiety
• OCD
• Rage and aggression
• Irritability
• Sensory sensitivities
• Cognitive or behavioral regression
• Persistent neuropsychiatric flares

Among FRAA-positive patients in her vector-borne disease study, Bartonella was also the most common individual infection identified.

Dr. Wells explains why she believes clinicians evaluating children with unusually severe or persistent PANS/PANDAS symptoms should consider looking beyond traditional triggers such as strep.

Can Infection Trigger an Autoimmune Process That Continues Afterwards?

One of the most important parts of the interview explores what happens after an infection.

Dr. Wells describes how an infection can activate the immune system, but in susceptible patients the immune response may not simply return to baseline once the original infection improves.

Immune dysregulation and molecular mimicry may potentially allow inflammatory or autoimmune processes to continue.

That creates an important question for Lyme disease:

Could a patient successfully reduce or address an infectious burden but continue experiencing symptoms because another downstream immune or metabolic problem remains?

What Causes FRAAs?

Dr. Wells discusses several factors associated with FRAAs.

One is a non-genetic hereditary pattern in which autoantibodies may be transmitted from a parent.

Another important area is animal dairy consumption.

She discusses research suggesting that proteins associated with animal dairy may share similarities with folate receptor structures. Through a molecular mimicry mechanism, antibodies generated against those proteins could potentially cross-react with folate receptors.

Dr. Wells therefore commonly incorporates dairy removal when addressing FRAA-positive patients.

She also discusses clinical observations suggesting that FRAA levels can fluctuate and may rise during periods of infection or physiological stress.

The FRAT Test

Patients cannot determine FRAA status through a routine folate blood test.

Dr. Wells discusses the FRAT Folate Receptor Autoantibody Test, a specialty blood test designed to detect autoantibodies to folate receptor alpha.

The test evaluates binding and blocking autoantibodies and can also identify the soluble folate receptor finding discussed in Dr. Wells' research.https://www.fratnow.com/

Folinic Acid and Leucovorin

If FRAAs are interfering with one pathway responsible for transporting folate into the brain, Dr. Wells explains that another approach may be to use an alternative transportation pathway.

That is where folinic acid, including the prescription form leucovorin, enters the discussion.

Rather than eliminating the autoantibodies themselves, folinic acid can utilize another folate transport mechanism to help deliver folate into the central nervous system.

Dr. Wells discusses improvements she has observed clinically in areas such as anxiety, OCD, cognitive function, communication, speech fluency, and other neuropsychiatric symptoms.

Importantly, she emphasizes that dosing needs to be individualized and gradually increased under the guidance of a knowledgeable practitioner.

People interested in the supplemental form discussed during the episode can learn more about Emephysis HI-FOLINIC.https://emephysis.com/products/hi-folinic

Treating More Than the Infection

One of the themes throughout this conversation is that complex chronic illness rarely comes down to one intervention.

Dr. Wells describes a three-part approach to many of her complex pediatric patients:

Address the microbial burden. Depending upon the individual patient, this may include vector-borne infections and other infectious triggers.

Address immune dysregulation and inflammation. This may involve anti-inflammatory and immunomodulatory strategies.

Support the symptoms affecting daily life. Helping a child function, communicate, sleep, attend school, interact socially, and experience less anxiety or OCD matters while deeper underlying issues are being addressed.

It is an approach that recognizes both the biology of chronic illness and the reality of the person living through it.

Learn More About Dr. Lindsey Wells

Dr. Lindsey Wells practices naturopathic medicine in Trumbull, Connecticut, with a major focus on complex pediatric conditions including PANS/PANDAS, autism, neurodevelopmental disorders, and vector-borne diseases.

Learn more about Dr. Wells and her practice.https://lindseywellsnd.com/about/

Read Dr. Wells' Research

Folate Receptor Alpha Autoantibodies in Vector-Borne Disease Populations

LIVE from ILADS: What happens when a Lyme disease patient needs a medication—but the standard dose, ingredients, or delivery method simply don't work for them?

Tick Boot Camp welcomes back Ray Solano, RPh, MBA, CCN, founder and owner of PD Labs, a specialty compounding pharmacy that works with practitioners to create personalized medications for patients with Lyme disease, CIRS, mold-related illness, pain, and other complex conditions.

This is Ray's second consecutive LIVE from ILADS conversation with Tick Boot Camp.

The first interview introduced Rich to the world of compounding pharmacy. This time, they go deeper into what personalized compounding can actually mean for someone with complex Lyme disease.

The discussion explores:

• Liposomal antibiotics
• Alternative medication delivery methods
• Medication sensitivities
• Methylene blue
• Low-dose naltrexone (LDN)
• Peptides
• BPC-157
• KPV
• Larazotide
• Curcumin
• Gut health
• Immune modulation
• Off-label prescribing
• Practitioner-pharmacist collaboration
• Precision medicine

The larger message is simple:

When one size doesn't fit all, changing the dose, formulation, delivery system, or inactive ingredients may give a practitioner additional options for an individual patient.

This interview was recorded live at the ILADS conference, so you may hear some of the energy and background activity of the event throughout the conversation.

What Is a Compounding Pharmacy?

Most people are familiar with traditional retail pharmacies.

A doctor writes a prescription for a commercially manufactured medication.

The pharmacy dispenses it.

Compounding works differently.

A compounding pharmacy can prepare a customized medication based on a prescription for an individual patient's needs.

That might involve changing:

• The dose
• The strength
• The dosage form
• The delivery method
• Certain inactive ingredients

A medication might need to be prepared as a capsule for one patient, a sublingual formulation for another, or a topical preparation in another situation.

Solano compares it to ordering a customized meal at a restaurant.

Someone may need one ingredient removed because of an allergy or intolerance. Another person may need something prepared differently.

The underlying idea is personalization.

PD Labs currently describes its work similarly, emphasizing customized medications and specialized formulations for conditions including Lyme disease, CIRS, pain, and other complex health challenges.

Why Compounding Can Matter in Complex Lyme Disease

People with complex Lyme and tick-borne illness can present with dramatically different needs.

One patient may tolerate a standard medication.

Another may struggle with the dosage.

Another may react to an inactive ingredient.

Another may need a different delivery method.

Solano believes this is where compounding can become particularly useful.

Instead of assuming the commercially available version is the only option, the prescribing practitioner and compounding pharmacist may be able to explore whether a different formulation better fits that particular patient.

That makes the pharmacy another member of the personalized-care team.

The Patient-Doctor-Pharmacist Triad

One of the most important ideas in this interview is what Solano describes as a triad:

Patient + Prescribing Practitioner + Compounding Pharmacist

The patient brings their experience and response to treatment.

The practitioner evaluates the patient and determines the medical strategy.

The compounding pharmacist brings specialized knowledge about formulation, dosing options, delivery methods, and what can appropriately be prepared under a prescription.

Solano says PD Labs also educates practitioners about available options and collaborates with them when developing individualized formulations.

For complicated Lyme disease cases, that collaboration may expand the practitioner's therapeutic toolbox.

Liposomal Antibiotics & Lyme Disease

One of the most interesting areas Solano discusses is liposomal medication delivery.

A liposome is essentially a tiny lipid-based structure that can be used as a drug-delivery vehicle.

Solano discusses using lipid-based formulations with oral antibiotics commonly prescribed in Lyme disease care, including doxycycline.

He describes PD Labs' approach as an attempt to change how certain medications are delivered and absorbed and, in some patients, potentially improve tolerability.

This is particularly relevant when a patient needs a medication but struggles with the conventional formulation.

Solano specifically discusses gastrointestinal irritation associated with doxycycline and describes the pharmacy's experience using alternative lipid-based formulations.

These are claims and clinical observations discussed by Solano during the interview and should not be interpreted to mean that a liposomal formulation is proven superior to standard doxycycline for Lyme disease or appropriate for every patient.

Can Delivery Method Change Treatment Tolerance?

This becomes a recurring theme throughout the conversation.

Sometimes the question isn't simply:

Which medication?

It may also be:

How is that medication getting into the patient?

The same active ingredient can potentially be formulated in different ways depending on the medication, prescription, and patient's needs.

For people who have become highly reactive during chronic illness, those details can matter.

This connects naturally with many of Tick Boot Camp's other ILADS conversations about precision medicine:

The objective isn't finding the protocol for Lyme disease.

It's finding an appropriate strategy for this patient.

Methylene Blue & Lyme Disease

Solano also discusses methylene blue, a medication with a long history of medical use that has attracted interest among some Lyme-literate practitioners.

During the interview, he specifically references work involving Dr. Richard Horowitz, methylene blue, dapsone, and botanical combinations.

Solano describes PD Labs' work developing alternative methylene blue formulations intended to improve delivery and tolerability.

Methylene blue is a prescription medication with important contraindications, interactions, and dosing considerations. It is not appropriate for everyone and should only be used under appropriate medical supervision.

For more Tick Boot Camp conversations about complex pharmaceutical Lyme treatment strategies, explore Dr. Richard Horowitz's interviews.

Low-Dose Naltrexone: Same Medication, Different Dose

Another useful illustration of compounding is low-dose naltrexone, commonly called LDN.

Naltrexone is commercially available at substantially higher doses for FDA-approved indications involving alcohol and opioid use disorders.

In integrative and functional medicine, practitioners may prescribe much smaller doses off-label for other purposes.

That creates a practical compounding need.

Solano discusses customized tablets that can help practitioners adjust or titrate doses rather than forcing patients into one fixed strength.

The example illustrates why compounding isn't necessarily about inventing a completely new drug.

Sometimes the innovation is in how an existing medication is prepared for an individual patient.

Peptides & Complex Chronic Illness

The conversation then moves into one of the fastest-evolving areas discussed throughout the ILADS interviews:

peptide therapy.

Peptides are short chains of amino acids that can act as signaling molecules within the body.

Solano discusses several peptides or peptide-related compounds being explored by practitioners working with complex chronic illness, particularly in relation to inflammation, gastrointestinal function, tissue repair, and immune regulation.

The compounds discussed include:

• BPC-157
• KPV
• Larazotide

Rich notes that several Tick Boot Camp guests have described BPC-157 as part of the rehabilitative phase of their personal recovery journeys.

Solano discusses PD Labs' work with alternative formulations designed around these emerging practitioner protocols.

Peptide therapies vary considerably in their regulatory status and evidence base. Discussion in this interview should not be interpreted as establishing these compounds as proven treatments for Lyme disease.

Gut Health After Lyme Treatment

Why discuss the gut during a conversation about Lyme disease?

Because patients undergoing prolonged or complicated treatment frequently report gastrointestinal challenges.

Solano discusses patients who have:

• Gut inflammation
• Significant food restrictions
• Difficulty tolerating foods
• Gastrointestinal symptoms during chronic illness

His peptide discussion partly centers on strategies practitioners may explore when attempting to support gastrointestinal function.

The broader principle is familiar to the Tick Boot Camp community:

Recovery isn't necessarily finished when microbial treatment ends.

Some patients need a significant period of rebuilding and rehabilitation.

BPC-157 & Rehabilitation

Rich specifically asks about BPC-157 because previous Tick Boot Camp guests have described using it during recovery.

Solano discusses a lipid-particle BPC formulation that PD Labs developed as an alternative to injectable delivery.

This is another example of the larger theme of the episode:

The molecule is only part of the equation.

Dose, formulation, delivery, tolerance, and the individual patient's needs can all influence how a practitioner approaches treatment.

Curcumin & Inflammation

Solano also discusses curcumin and tetrahydrocurcuminoids in the context of inflammation and pain.

Rather than focusing only on conventional capsules or powders, he describes applying similar lipid-delivery concepts to these compounds.

Again, this discussion reflects Solano's formulation philosophy rather than establishing a particular compounded curcumin product as a Lyme disease treatment.

Alpha-Gal, Sensitivities & Inactive Ingredients

The Lyme and tick-borne disease community has an especially important reason to think about medication ingredients:

alpha-gal syndrome and other sensitivities.

Some patients may need to consider whether medication formulations contain mammalian-derived ingredients or other components they don't tolerate.

Others may react to dyes, fillers, binders, or particular capsule materials.

The active medication may be appropriate while the commercially manufactured product is not.

A compounding pharmacist can sometimes work with the prescriber to determine whether an alternative formulation is possible.

This is where personalization becomes much more practical than simply saying every patient needs a unique treatment plan.

Sometimes customization comes down to the actual ingredients inside the capsule.

Off-Label Prescribing

The interview also addresses a subject that can confuse patients:

off-label medication use.

Off-label prescribing generally means an appropriately licensed clinician prescribes an approved medication for a use, dose, route, or population not included in its FDA-approved labeling.

It does not automatically mean that the treatment is illegal or inappropriate.

Off-label prescribing is used throughout medicine.

However, an off-label use also shouldn't automatically be interpreted as proven safe or effective for a particular condition simply because a clinician can legally prescribe it.

Solano describes compounding pharmacies as working with prescribers when an individualized formulation is needed to carry out an appropriate prescription.

Precision Medicine Is More Than Choosing a Drug

Rich repeatedly brings the conversation back to precision medicine.

Precision isn't simply deciding which antimicrobial to use.

It may involve:

• Which medication
• What dose
• How quickly to titrate
• Which delivery method
• Which inactive ingredients
• What the patient can tolerate
• Which other conditions are present
• What phase of treatment or recovery the patient is in

Solano describes working with practitioners to match formulations to those individual needs.

That flexibility is particularly relevant to patients who sit outside the middle of the traditional bell curve.

Immune Modulation & the Future of Compounding

Looking forward, Solano is especially interested in immune modulation and peptide therapies.

He describes peptides as potentially highly targeted signaling tools and points out that peptide-based medicine itself isn't new—insulin and oxytocin are familiar examples of peptide hormones.

His interest is in how newer or differently applied peptide strategies might eventually expand options available to practitioners working with immune dysfunction and complex chronic illness.

As with many emerging areas discussed at ILADS, more research will be necessary to determine which approaches provide meaningful clinical benefit, for whom, at what doses, and with what risks.

Today's Tools—and Tomorrow's

One reason Tick Boot Camp returned to Ray Solano for a second interview is the message of hope through expanding options.

Complex Lyme patients often reach moments when they feel they've tried everything.

But medicine isn't static.

New research emerges.

Existing drugs are investigated in different ways.

Delivery technologies evolve.

Practitioners learn from patients.

Pharmacists develop new formulation options.

None of that guarantees that the next treatment will be the answer for a particular person.

But it does mean that today's toolbox isn't necessarily tomorrow's toolbox.

For someone who has been sick for years, knowing that clinicians, researchers, pharmacists, and patients are still working to develop better options can itself be meaningful.

About Ray Solano, RPh, MBA, CCN

Ray L. Solano, RPh, MBA, CCN is the founder and owner of PD Labs, a specialty compounding pharmacy based in Cedar Park, Texas.

Solano is a pharmacist and board-certified clinical nutritionist with decades of experience in pharmacy and integrative healthcare. He graduated from Mercer Southern School of Pharmacy with an emphasis in nuclear pharmacy and has pursued advanced training in areas including sterile compounding, nutritional medicine, hormones, and specialized formulations.

PD Labs creates customized medications and works with prescribing practitioners on formulations for a variety of patient populations, including people with Lyme disease, CIRS, mold-related illness, pain, and other complex health conditions.

Solano also hosts Healthy Choices, a health-focused podcast and radio program featuring conversations with practitioners, researchers, and other healthcare professionals.

Key Topics in This Episode

Ray Solano, PD Labs, Prescription Dispensing Laboratories, compounding pharmacy, Lyme disease compounding pharmacy, Lyme disease treatment, personalized Lyme treatment, precision medicine, liposomal antibiotics, liposomal doxycycline, doxycycline Lyme disease, methylene blue Lyme disease, Dr. Richard Horowitz, low-dose naltrexone, LDN, peptides, peptide therapy, BPC-157, KPV, larazotide, curcumin, alpha-gal syndrome, medication sensitivities, Lyme disease gut health, immune modulation, off-label medications, customized medications, specialty pharmacy, integrative medicine, Lyme disease recovery, ILADS, and tick-borne disease.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

Ray joined Tick Boot Camp at ILADS for the second consecutive year. Their first conversation introduced the fundamentals of compounding pharmacy; this follow-up focuses more deeply on the formulations and emerging tools being used or explored by practitioners caring for complex Lyme disease patients.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations—shorter, focused, and surrounded by the energy and activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Hear directly from Lyme disease doctors and healthcare professionals about the different approaches being used in complex chronic illness care.

Explore the Tick Boot Camp Podcast for patient stories and conversations with doctors, researchers, pharmacists, advocates, and other voices working to improve understanding of Lyme disease and tick-borne illness.

LIVE from ILADS: What happens when nearly 20,000 Lyme disease patients pool their experiences to help researchers understand what patients are actually living through?

Tick Boot Camp sits down in person with Dorothy Kupcha Leland, President of LymeDisease.org to explore the power of MyLymeData, patient-driven Lyme disease research, sex-based differences in persistent Lyme disease, evidence-based patient education, and the importance of giving people reliable information without telling them which treatment they should choose.

This conversation was also personally meaningful for Tick Boot Camp.

After years of interacting with Dorothy through Zoom and other platforms, Rich and Dorothy finally had the opportunity to meet face-to-face at ILADS.

The timing couldn't have been better.

At the time of this interview, MyLymeData was celebrating its 10th anniversary and approaching 20,000 enrolled patients.

Those patients have contributed information about tick bites, diagnostic delays, symptoms, doctors, treatments, outcomes, and other aspects of living with Lyme disease—creating a large patient-powered dataset researchers can use to ask questions that traditional studies haven't always addressed.

For people who are too sick to become traditional advocates, MyLymeData also offers something powerful:

Your experience can become data. Your data can become research. And that research can help move the Lyme community forward.

What Is MyLymeData?

MyLymeData is LymeDisease.org's patient-powered research registry.

Launched in 2015, the program allows people with Lyme disease to privately contribute real-world information about their experiences.

Participants can report information such as:

• Whether they remember a tick bite
• How long diagnosis took
• How many doctors they saw
• Symptoms they experienced
• Treatments they tried
• What helped
• What didn't help
• Co-infections and other diagnoses
• Functional impact of illness
• Other aspects of their Lyme disease journey

Rather than relying exclusively on what clinicians, insurance claims, or researchers record about Lyme disease patients, MyLymeData gives patients the opportunity to report their experiences directly.

That distinction matters.

Turning Patient Stories Into Lyme Disease Research

Dorothy describes MyLymeData as a way to assemble thousands of individual experiences into a larger picture of what Lyme patients actually look like and what they need.

One person's experience is a story.

Thousands of systematically collected experiences become data that researchers can analyze.

That patient-powered model has allowed MyLymeData to investigate questions surrounding diagnosis, treatment, symptoms, access to care, quality of life, and differences among patient subgroups.

Researchers have also used the registry in peer-reviewed publications.

Explore MyLymeData research and publications to see how patient-reported information is being transformed into Lyme disease research.

Why Participating Can Be a Form of Advocacy

Rich explains why Tick Boot Camp has frequently encouraged patients to participate in MyLymeData.

People living with severe chronic illness often ask:

"What can I do to help?"

Not everyone has the health to attend events, lobby lawmakers, organize fundraisers, create content, or become a public advocate.

But contributing information to patient-powered research can itself be a meaningful form of advocacy.

A patient can document what happened to them.

That experience becomes part of a larger dataset.

Researchers can analyze that information.

And eventually the findings may help shape future research questions, healthcare policy, clinical studies, and understanding of the patient population.

For someone who feels that Lyme disease has taken away their ability to contribute, that can be deeply validating.

What MyLymeData Revealed About Women & Lyme Disease

One of the most important examples discussed in this interview involves sex-based differences in persistent Lyme disease.

For years, Tick Boot Camp noticed something that was difficult to ignore:

A large percentage of people volunteering to publicly tell their Lyme disease stories were women.

The platform was sometimes criticized for disproportionately interviewing women.

But Tick Boot Camp wasn't intentionally excluding men.

Rich explains that the team actively tried to find more men willing to share their Lyme experiences and repeatedly encountered the same difficulty.

Then MyLymeData provided research that helped add context to what the community was observing.

Women Report Different Experiences With Persistent Lyme Disease

The MyLymeData research discussed by Dorothy examined data from 2,170 people with persistent Lyme disease.

Researchers found significant differences between the experiences reported by women and men.

Women reported:

• Longer diagnostic delays
• More severe symptoms
• Greater functional impairment
• Higher rates of tick-borne co-infections
• More misdiagnoses

The researchers did not find significant sex-based differences in antibiotic treatment response or side effects.

The takeaway isn't that men and boys don't get Lyme disease.

They absolutely do.

The question is whether biological sex may influence disease presentation, diagnosis, progression, or other aspects of Lyme disease—and whether researchers need to examine those differences rather than averaging everyone together.

Read more about sex-based differences in Lyme disease and the research generated using MyLymeData.

Why Sex-Disaggregated Lyme Research Matters

Historically, many medical studies did not adequately examine whether diseases affected men and women differently.

If researchers combine everyone into one dataset without analyzing sex-based differences, important patterns may disappear inside the average.

Dorothy explains why identifying those patterns matters for everyone.

Could symptoms present differently?

Could one group experience longer diagnostic delays?

Could biological differences influence immune responses?

Could testing perform differently?

Could different approaches eventually improve outcomes?

These are questions for research—not reasons to assume every woman or every man will experience Lyme disease the same way.

That distinction fits another major theme running throughout Tick Boot Camp's ILADS conversations:

Individual patients should not be reduced to averages.

Validation Through Patient-Reported Data

MyLymeData can also provide something less measurable but extremely important:

validation.

Someone who has experienced profound fatigue, cognitive dysfunction, pain, or other difficult-to-explain symptoms may have spent years wondering whether anyone else experiences the same thing.

Patient-reported data can show them that they aren't alone.

Rich describes how Tick Boot Camp community members can look at aggregated symptom information and recognize experiences similar to their own.

Instead of seeing one social media post or hearing one person's anecdote, they can see patterns drawn from thousands of patients.

The patient's individual experience remains unique.

But seeing similar experiences reflected in a larger population can help people feel heard and understood.

The 10-Year MyLymeData Research Chartbook

At the time of this ILADS interview, Dorothy shared that LymeDisease.org was preparing a special publication summarizing what the organization had learned during the first decade of MyLymeData.

That resource has since been released.

The MyLymeData 2025 Research Chartbook brings together a decade of patient-powered research and provides a visual overview of findings generated through the registry.

Among the subjects addressed are:

• Diagnostic delays
• Persistent Lyme disease
• Treatment outcomes
• Patient subgroups
• Sex-based differences
• Clinical trial enrollment
• Quality of life
• Treatment response
• Research design
• Real-world patient populations

For patients, clinicians, researchers, and advocates who want a deeper look at what patient-generated data has contributed to Lyme disease research, the chartbook is an important resource.

LymeDisease.org as a Lyme News Hub

MyLymeData isn't the organization's only major contribution.

Dorothy describes LymeDisease.org as a news hub for the Lyme community.

When her daughter became sick more than 20 years ago, Dorothy remembers how difficult it was to find useful Lyme disease information.

There were relatively few books and far fewer reliable online resources than exist today.

LymeDisease.org has helped build that information ecosystem through:

• Lyme disease news
• Research coverage
• Educational articles
• Blogs
• The Lyme Times
• Weekly email newsletters
• Patient resources
• Physician information
• Advocacy
• MyLymeData

Dorothy's own Touched by Lyme writing has also become a long-running source of Lyme disease news and commentary.

"Show Us the Receipts"

Rich highlights something Tick Boot Camp particularly values about LymeDisease.org:

Research is linked back to its source.

Rather than simply announcing an exciting headline or repeating a treatment claim, the organization frequently gives readers access to the underlying study or evidence being discussed.

That allows patients to investigate further.

It also allows advocates to understand where claims originate rather than simply repeating something they encountered on social media.

In a disease community where information can become polarized quickly, access to primary research matters.

Information Without Telling Patients What to Do

Dorothy makes an important distinction about LymeDisease.org's role.

Patients sometimes contact the organization wanting specific instructions:

What medication should I take?

Which treatment should I do?

That's not LymeDisease.org's role.

Those decisions belong between patients and qualified healthcare professionals.

Instead, LymeDisease.org tries to help people become better-informed patients.

Understanding available treatments, controversies, evidence, risks, and unanswered questions can help someone have a more productive conversation with their doctor.

SOT: A Good Example of Responsible Lyme Education

Dorothy uses Supportive Oligonucleotide Therapy (SOT) as an example.

Patients were asking questions about it.

Rather than telling people:

"You should do SOT."

or

"You should never do SOT."

LymeDisease.org published information explaining the treatment and the surrounding questions and controversy.

Dorothy's philosophy was straightforward:

Patients are asking.

Give them information.

Then let them discuss whether it is appropriate for their individual situation with their healthcare provider.

That approach closely parallels Tick Boot Camp's philosophy when covering emerging and controversial treatments.

For more conversations specifically involving SOT, explore Tick Boot Camp's interview with Dr. Hank Sloan, ND.

One Treatment Can Help One Person & Hurt Another

Dorothy's perspective was shaped partly by eight years leading a Lyme disease support group in Sacramento.

She heard countless patient stories.

And she noticed something important:

Almost any treatment someone mentioned had helped somebody—and had failed or caused problems for somebody else.

She mentions examples ranging from IV antibiotics to hyperbaric oxygen.

That's why anecdotal success shouldn't automatically become a universal treatment recommendation.

A person who finally improves after years of suffering understandably wants to tell everyone:

"This is what worked!"

That desire usually comes from a good place.

But another patient may have a completely different infection profile, physiology, medical history, co-infections, immune response, environmental exposure, or set of underlying conditions.

What helped one person may not help another.

There Is No Universal Lyme Treatment

This becomes one of the strongest shared principles between LymeDisease.org and Tick Boot Camp.

There is no single treatment that's appropriate for everyone.

Precision matters.

Individualization matters.

The clinician matters.

The patient matters.

That's also why Tick Boot Camp doesn't tell listeners which Lyme doctor they should see.

Instead, the Tick Boot Camp Doctors Directory gives people access to long-form interviews and profiles so they can hear physicians explain their own philosophies, approaches, experiences, and areas of focus.

Patients can learn.

They can ask better questions.

They can determine which philosophy resonates with them.

But individualized medical decisions remain between the patient and their healthcare team.

Reliable Information Builds Community

Dorothy also discusses another important function of LymeDisease.org:

helping people feel connected to a community.

A weekly newsletter may sound simple.

But for someone who has spent years isolated by illness, knowing what's happening in Lyme disease research, advocacy, treatment, and policy can help them feel connected to something larger.

Good information can empower.

It can validate.

It can create questions to bring to a doctor.

It can help someone discover new research.

And it can give patients ways to participate in progress even while they're still sick.

How Can Lyme Patients Help?

Dorothy closes with several simple ways people can support the work:

Participate in MyLymeData.

Adding your experience contributes to a growing body of patient-powered research.

Join the LymeDisease.org mailing list.

Receiving and sharing reliable information helps spread awareness and keeps people connected with developments in the field.

Support LymeDisease.org.

For people who are able, donations help sustain the organization's education, advocacy, communication, and research efforts.

Most importantly, patients shouldn't underestimate the value of their own experience.

The information one person contributes may feel small.

Combined with thousands of other patients, it can reveal patterns that researchers otherwise might never see.

About Dorothy Kupcha Leland

Dorothy Kupcha Leland is President of LymeDisease.org, one of the longest-running patient advocacy organizations serving people affected by Lyme disease and other tick-borne illnesses.

Her involvement in the Lyme community grew from her family's experience after her daughter became ill more than two decades ago.

Before taking on her current leadership role, Dorothy spent years as a Lyme disease support group leader in Sacramento, giving her direct exposure to the wide range of experiences, treatments, successes, setbacks, and challenges reported by patients.

She writes the long-running Touched by Lyme blog and is co-author of When Your Child Has Lyme Disease: A Parent's Survival Guide and Finding Resilience: A Teen's Journey Through Lyme Disease.

LymeDisease.org's work includes patient education, advocacy, research, news coverage, physician resources, and MyLymeData, its large-scale patient-powered research registry.

Key Topics in This Episode

Dorothy Leland, LymeDisease.org, MyLymeData, Lyme disease research, patient-powered research, Lyme disease patient registry, persistent Lyme disease, chronic Lyme disease, women and Lyme disease, sex differences in Lyme disease, Lyme disease symptoms, Lyme disease diagnosis, diagnostic delays, Lyme disease treatment, SOT Lyme disease, Supportive Oligonucleotide Therapy, Lyme disease advocacy, patient advocacy, Lyme disease data, real-world evidence, individualized Lyme treatment, precision medicine, Lyme disease doctors, Lyme disease community, ILADS, and patient education.

About This LIVE from ILADS Interview

This short-form conversation was recorded in person at the 2025 International Lyme and Associated Diseases Society Annual Scientific Conference, From Terrain to Treatment: Advances in Vector-Borne Illness, held October 9–12, 2025, in San Antonio, Texas.

After years of virtual interactions, this was the first time Rich and Dorothy had the opportunity to meet and record together in person.

Because these interviews were recorded live at the conference, they have a different feel from Tick Boot Camp's traditional long-form virtual and studio conversations—shorter, focused, and surrounded by the energy and activity of ILADS.

Explore all Tick Boot Camp LIVE from ILADS interviews.

More from Tick Boot Camp

Explore conversations with Lyme disease doctors and healthcare professionals to learn directly from practitioners about their approaches to Lyme disease and complex chronic illness.

Explore conversations with Lyme disease researchers working to advance understanding of tick-borne disease.

Visit the Tick Boot Camp Podcast for patient stories and interviews with doctors, researchers, advocates, and other voices working to improve Lyme disease awareness, understanding, and care.