Why Doctors Dismiss Chronic Lyme Disease

If you have been told your persistent symptoms are “all in your head,” that “Lyme disease doesn’t last that long,” or that you simply need to “accept” your diagnosis of post-treatment Lyme disease syndrome (PTLDS) and move on—you are not imagining the dismissal you are experiencing.

Over 37 years of treating Lyme disease, I have seen thousands of patients who were told their ongoing illness was impossible, improbable, or psychological. Many had been to multiple physicians. Many had normal test results. And many had been treated for Lyme disease in the past—only to be told that further treatment was unwarranted, unproven, or unnecessary.

This dismissal is genuine. It is widespread. And it is not your fault.

Understanding why doctors dismiss chronic Lyme disease involves examining medical training, institutional guidelines, scientific controversy, economic pressures, and deeply embedded assumptions about what Lyme disease “should” look like. These forces do not excuse the harm they cause—but they can help patients navigate a medical system that too often fails them.

Medical Training Shapes What Doctors Believe Is Possible

Physicians are taught that Lyme disease is easy to diagnose (look for the bull’s-eye rash), easy to treat (2-4 weeks of antibiotics), and easy to cure (symptoms resolve completely).

This framework is presented as settled science in most medical schools and residency programs. It is reinforced through textbooks, board exams, and continuing medical education. Doctors learn that Lyme disease is a straightforward infection with a predictable course—and that anything outside this pattern is either rare, overdiagnosed, or not actually Lyme disease.

The problem is that this teaching does not match clinical reality.

Many patients never develop a rash. Many are not diagnosed early. And many do not recover fully after standard treatment. When a physician trained in the “textbook” model encounters a patient whose illness does not fit that pattern, the instinct is often to question the diagnosis—not the model.

I was trained in this same system. Early in my career, I believed what I had been taught. It was only after seeing patient after patient who defied the textbook that I began to question whether the framework itself was incomplete.

Institutional Guidelines Create Professional Risk

Medical guidelines are intended to standardize care and ensure quality. But in the case of Lyme disease, guidelines issued by organizations such as the Infectious Diseases Society of America (IDSA) have become a source of professional constraint—and, for some physicians, professional risk.

The IDSA guidelines assert that Lyme disease is rarely chronic, that extended antibiotic therapy is not supported by evidence, and that persistent symptoms after treatment are not due to ongoing infection.

Physicians who deviate from these guidelines may face scrutiny from state medical boards, insurance claim denials, criticism from colleagues, and fear of malpractice liability. Even when a physician believes a patient may benefit from extended treatment, the professional and economic pressures to conform can be overwhelming. Some doctors have lost their licenses for treating chronic Lyme disease outside guideline recommendations.

This creates a chilling effect. Many physicians who privately acknowledge the limitations of current guidelines are unwilling to act on that acknowledgment when it means risking their careers.

I have been fortunate to practice in a setting where I could make treatment decisions based on clinical judgment rather than institutional pressure. Not all physicians have that freedom.

The Nomenclature Debate: PTLDS vs. Chronic Lyme

One of the most significant barriers to proper care is the debate over terminology.

Post-treatment Lyme disease syndrome (PTLDS) is the term preferred by public health agencies and mainstream infectious disease specialists. It describes persistent symptoms after completion of antibiotic therapy—but it explicitly assumes that the infection has been eradicated and that ongoing symptoms are not due to active Borrelia burgdorferi.

Chronic Lyme disease is the term many patients and Lyme-treating physicians use to describe ongoing illness. It does not assume that infection has been cleared, and it allows for the possibility that persistent symptoms may be due to ongoing infection, biofilm persistence, immune dysregulation triggered by infection, or co-infections that were never treated.

The choice of terminology is not merely semantic. It determines whether further treatment is considered, whether symptoms are investigated or dismissed, and whether the patient is believed or questioned.

When a physician uses the term PTLDS, they are often signaling that they do not believe further antibiotic therapy is appropriate—and that the patient’s symptoms, while genuine, are not caused by active infection. This can feel like abandonment to a patient who has not recovered.

I do not insist on one term over the other. What I insist on is this: Persistent symptoms deserve investigation, not dismissal. Labels should not be used to foreclose clinical inquiry.

Economic and Institutional Pressures Discourage Individualized Care

Modern medical practice operates under significant time and financial constraints. Insurance reimbursement models reward volume over complexity. Electronic health records demand standardized documentation. Physicians are expected to see more patients in less time.

In this environment, a 15-minute appointment leaves little room for nuanced discussion. Complex, multi-system illness is harder to code and bill. Medically unexplained symptoms may be dismissed as outside the physician’s scope. Ordering additional tests or pursuing extended treatment requires justification that may not be reimbursed.

Lyme disease does not fit neatly into this system. Patients with persistent, multi-system symptoms require time, clinical attention, and individualized treatment planning. When the system does not support that kind of care, dismissal becomes the path of least resistance.

I am not excusing this. I am explaining it. Physicians are working within structural constraints that make it difficult to provide the care complex cases require.

Scientific Uncertainty Is Misrepresented as Certainty

There is ongoing scientific debate about whether Borrelia burgdorferi can persist after antibiotic treatment, whether biofilm protects bacteria from standard therapy, whether immune dysregulation can sustain symptoms even after bacterial clearance, and whether co-infections contribute to persistent illness.

These are legitimate scientific questions. Reasonable experts disagree. Research is ongoing.

But in clinical practice, this uncertainty is often presented to patients as settled fact. Patients are told there is no such thing as chronic Lyme, that their symptoms cannot be from Lyme disease, or that further antibiotics will not help them.

Uncertainty in science does not justify certainty in dismissal.

When I see a patient whose symptoms began after a known tick bite, whose illness fits a pattern I have seen hundreds of times, and who has not improved with standard treatment—I do not tell them their experience is impossible simply because the research is incomplete.

Clinical medicine has always required physicians to act in the presence of uncertainty. The question is whether we act with humility and openness—or with dogma and dismissal.

The Impact on Patients: Medical Abandonment

When patients are told their illness is not genuine, not treatable, or not worth investigating, the harm extends beyond physical symptoms.

Patients describe loss of trust in the medical system, psychological harm from being told symptoms are imagined, delays in diagnosis that allow illness to progress, financial burden from seeking care outside insurance networks, and social isolation when even physicians do not believe them.

This is what I call medical abandonment—the failure to provide ongoing care, investigation, or support to a patient whose illness does not fit a recognized framework.

I have spent much of the past year developing an ethics-based framework around this issue. Medical abandonment is not just a failure of individual physicians. It is a systemic failure that results from the interaction of guidelines, training, economic pressures, and scientific controversy.

Patients deserve better. They deserve physicians who listen without prejudgment, investigate persistent symptoms rather than dismiss them, acknowledge uncertainty rather than impose false certainty, and provide continuity of care even when answers are elusive.

What Patients Can Do

Understanding why dismissal happens does not make it acceptable. But it can help patients navigate the system more effectively.

Patients experiencing dismissal should seek physicians who specialize in Lyme disease. Organizations such as the International Lyme and Associated Diseases Society (ILADS) maintain referral networks.

Document your symptoms carefully. Detailed records can help when seeking second opinions or appealing insurance denials.

Advocate for yourself. You have the right to ask questions, request further evaluation, and seek care that addresses your ongoing symptoms.

Do not internalize dismissal. If a physician tells you your symptoms are impossible, that reflects the limitations of their training—not the validity of your experience.

What Medicine Owes Patients

The medical profession has a responsibility to acknowledge uncertainty rather than impose false certainty, investigate persistent symptoms rather than dismiss them, provide continuity of care even when diagnosis is complex, respect patient autonomy in treatment decisions, and revise guidelines as new evidence emerges.

Progress is being made. Research into persistent infection, biofilm, and immune dysregulation continues. Some medical boards have revised their positions on extended antibiotic therapy. Patient advocacy has brought attention to the gaps in care.

But change is slow. And in the meantime, patients continue to suffer.

Clinical Takeaway

Chronic Lyme disease is dismissed not because patients are wrong, but because the medical system is unprepared to address the complexity of persistent tick-borne illness. Medical training, institutional guidelines, economic pressures, and scientific controversy all contribute to a culture in which dismissal becomes routine—and patients are left to navigate an illness that medicine has not yet fully understood. You are not imagining your symptoms. You are not exaggerating your illness. You deserve care, investigation, and respect. If you are still searching for answers, do not give up. Recovery is possible—but it requires physicians willing to look beyond the textbook and guidelines willing to evolve with the evidence.

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Frequently Asked Questions

Why do doctors dismiss chronic Lyme disease?

Doctors dismiss chronic Lyme disease due to a combination of medical training that presents Lyme as easily cured, institutional guidelines that discourage extended treatment, professional risks including medical board scrutiny, economic pressures that reward volume over complexity, and scientific uncertainty that is often misrepresented as settled fact.

What is the difference between PTLDS and chronic Lyme disease?

PTLDS (post-treatment Lyme disease syndrome) assumes infection has been eradicated and persistent symptoms are not due to active bacteria. Chronic Lyme disease allows for the possibility of ongoing infection, biofilm persistence, immune dysregulation, or untreated co-infections. The terminology choice determines whether further treatment is considered or symptoms are dismissed.

Can I be dismissed even with positive Lyme tests?

Yes. Even patients with positive Lyme disease tests can be dismissed if their symptoms persist after standard treatment. Physicians following strict IDSA guidelines may refuse extended therapy regardless of test results, viewing persistent symptoms as unrelated to active infection.

What should I do if my doctor dismisses my chronic Lyme symptoms?

Seek physicians who specialize in Lyme disease through organizations like ILADS. Document your symptoms carefully for second opinions. Advocate for yourself by requesting further evaluation. Do not internalize the dismissal—it reflects limitations in medical training and guidelines, not the validity of your illness.

Is medical abandonment in Lyme disease a recognized ethical issue?

Yes. Medical abandonment—the failure to provide ongoing care when illness does not fit recognized frameworks—is increasingly recognized as an ethical concern in Lyme disease. This systemic failure results from the interaction of restrictive guidelines, limited training, economic pressures, and scientific controversy that leaves patients without proper support.

References

1. Aucott JN, Rebman AW, Crowder LA, Kortte KB. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? Qual Life Res. 2013;22(1):75-84.
2. Rebman AW, Aucott JN. Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease. Front Med (Lausanne). 2020;7:57.
3. Stricker RB, Johnson L. Lyme disease: the next decade. Infect Drug Resist. 2011;4:1-9.
4. Lantos PM, Wormser GP. Chronic coinfections in patients diagnosed with chronic Lyme disease: a systematic review. Am J Med. 2014;127(11):1105-1110.
5. Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014;12(9):1103-1135.