Our public health system has faced enormous pressure in recent years. Between emerging diseases, evolving science, and the challenge of clear communication, it’s no surprise that public trust has become strained. But for many Lyme disease patients, that mistrust didn’t start with the pandemic. It began with a deeper, longer-running problem: the chronic Lyme treatment controversy.

I see the fallout from this every day in my practice. Patients come to me after feeling dismissed, misunderstood, or told there’s nothing more that can be done. And the impact on their health—and their faith in medicine—is profound.

When Medicine Stops Listening

Many of my Lyme patients were told their symptoms didn’t matter if their test was negative. Others were assured that 30 days of antibiotics would be enough—regardless of how they felt. Some were told their lingering symptoms were just stress or aging.

When medicine becomes inflexible, patients stop believing the system is working for them. This is where the chronic Lyme treatment controversy really begins: not just in the science, but in the silence. In the refusal to listen.

The Testing Problem: Where the Chronic Lyme treatment Controversy Begins

One major driver of the chronic Lyme treatment controversy is the continued reliance on the two-tier Lyme test, which remains the standard diagnostic tool despite its limitations—especially in early infection. False negatives are common, yet many physicians still treat the lab result, not the patient.

This means that even when a patient presents with a tick bite, flu-like symptoms, or migrating joint pain, they’re often told “you don’t have Lyme” because the test doesn’t confirm it. The result? Delayed treatment, worsening illness, and the belief that no one is listening

One Pill for Prevention?

Some patients were told that a single 200 mg dose of doxycycline would prevent Lyme disease after a tick bite. But weeks later, they developed fatigue, joint pain, and brain fog—classic signs of late-stage Lyme.

What they weren’t told was that this approach only aims to prevent the erythema migrans rash. It has not been proven to prevent Lyme carditis, neurologic Lyme, or chronic manifestations of the disease. This is another layer of the chronic Lyme treatment controversy—offering a simplified “fix” while downplaying the complexity of what can go wrong.

The 30-Day Treatment Limit

One of the most widely recognized—and controversial—aspects of Lyme treatment is the 30-day antibiotic limit. Many patients are told that Lyme disease can only be treated with two to four weeks of antibiotics. This time frame is based on a narrow set of clinical trials that excluded patients with more complex or late-stage illness.

But I’ve seen patients continue to suffer after those 30 days—still experiencing fatigue, brain fog, joint pain, or neurological symptoms. And I’ve also seen patients improve with longer or combination therapy. For some, stopping at 30 days cuts treatment short just as healing begins. Yet many doctors are bound by outdated guidelines or fear of criticism.

This rigid boundary is not just a clinical decision—it’s a source of lost time, worsening symptoms, and growing mistrust.

The Overlooked Role of Co-Infections

One of the most significant blind spots in Lyme disease care is the failure to recognize and treat co-infections. Lyme disease is not always the only tick-borne illness transmitted. Patients may also be infected with Babesia, Bartonella, Anaplasma, Ehrlichia, or others. These pathogens often require different medications and treatment strategies.

Yet many physicians are unfamiliar with these co-infections or assume that doxycycline will treat them all. It doesn’t. For instance, Babesia is a malaria-like parasite that requires antiparasitic treatment, not antibiotics alone.

I’ve had patients who remained ill despite being “treated for Lyme,” only to improve once a hidden co-infection was diagnosed and properly addressed. When these co-infections are missed, it’s no surprise that symptoms persist—and that patients lose faith in the care they’re receiving.

PTLDS and the Refusal to Consider Persistent Infection

Patients who remain ill after standard antibiotic therapy are often told they have Post-Treatment Lyme Disease Syndrome (PTLDS)—but that the infection itself is gone. For some, that label brings validation. For others, it brings a dead end.

I’ve seen patients improve after further treatment—sometimes for previously undetected co-infections like Babesia or Bartonella. But in many cases, public health guidelines resist the idea of ongoing infection. This unwillingness to explore alternative or extended treatment options is central to the chronic Lyme treatment controversy.

Why Clinical Judgment Still Matters

Despite all the controversy, one truth remains: no test or guideline can replace good clinical judgment. When a patient isn’t recovering, we need to keep asking questions. We need to stay flexible. We need to treat the person in front of us—not just the protocol.

Many of my patients have gotten better through personalized, extended care—whether that meant longer courses of antibiotics, combination therapies, or identifying co-infections. That’s not irresponsible. That’s responsive medicine.

Rebuilding Trust—One Patient at a Time

The chronic Lyme treatment controversy has created a deep divide—between doctors and patients, between institutions and individuals, and between science and lived experience. But it’s not too late to rebuild.

Lyme disease has exposed where rigid policies and limited tools fall short. It also offers a roadmap for change: listen to patients, treat beyond the lab results, and keep evolving the science.

Trust isn’t something we demand. It’s something we earn. And for those living with Lyme disease, that trust begins with being believed.

Links:

CDC –About Lyme Disease
NIH –Lyme Disease Overview 
Dr. Cameron’s website Four Lyme disease educational videos