Chronic Lyme Disease Controversy: Doctors Seek Answers
Chronic Lyme disease controversy continues as physicians debate the quality of evidence and the need for better treatment studies.
Greenberg’s Letter to the Editor states, “The recently published article by Shapiro et al hoped to be topical in this age of ‘alternative facts’ but fell short, providing mainly biased viewpoints that prevent independent assessment of existing research in chronic Lyme disease. Presenting this conclusion as unquestionable is misleading.” [1]
Shapiro and colleagues began their article writing, “Recently, there has been considerable interest in the topic of fake news. For infectious diseases physicians, false and misleading information about the diagnosis and treatment of Lyme disease is not new. It is increasing in frequency and prominence, creating much confusion among primary care physicians and their patients.” [2]
The authors dismiss the need for retreatment with antibiotics, stating, “Results of multiple clinical trials show that patients with well-documented Lyme disease who have residual nonspecific symptoms after treatment do not benefit from additional treatment, even with extended courses of IV antibiotics.” [2]
Concerns Raised About Chronic Lyme Disease Research
Greenberg’s letter expressed concern over the quality of data from the clinical trials cited by Shapiro and colleagues.
Her concerns included:
- “Critical statistical reviews of American antibiotic retreatment studies by more than one research group concluded that these trials were underpowered and did not prove that retreatment was ineffective.”
- “Some analyses found support for a possible role of antibiotics in retreatment of chronic Lyme disease.”
- “Two trials demonstrated improvement in patients with severe symptoms at baseline.”
Ongoing Debate Over Treatment Evidence
In response to Greenberg’s concerns, Shapiro stated that most of the issues raised had been addressed in prior publications.
This exchange highlights the ongoing chronic Lyme disease controversy surrounding interpretation of clinical trial data and treatment recommendations.
Differences in study design, patient selection, and outcome measures continue to contribute to conflicting conclusions.
Why the Chronic Lyme Disease Controversy Persists
The debate over chronic Lyme disease reflects broader challenges in medicine, including:
- Variability in patient presentation and disease course
- Limitations of existing diagnostic tests
- Heterogeneity in study populations
- Differences in interpretation of clinical trial data
These factors complicate efforts to develop consensus guidelines and may contribute to ongoing disagreement among clinicians.
Clinical Perspective
The chronic Lyme disease controversy underscores the importance of maintaining an open and evidence-based approach to patient care.
While some studies suggest limited benefit from retreatment, others indicate potential improvement in selected patients, particularly those with more severe symptoms.
Clinicians must balance existing evidence with individual patient presentation, recognizing the limitations of current research.
The COVID-19 meta-analysis underscored a broader truth: even widely used or once-promising treatments may not deliver consistent results across patient populations. In Lyme disease, this lesson resonates deeply—what helps one patient may not help another, and treatment must be highly individualized.
Clinical Takeaway
Chronic Lyme disease controversy remains unresolved, reflecting gaps in research and differences in interpretation of existing evidence.
More rigorous, well-designed studies are needed to guide treatment decisions and improve outcomes for patients with persistent symptoms.
References
- Greenberg R. Chronic Lyme Disease: An Unresolved Controversy. Am J Med. 2017;130(9):e423.
- Shapiro ED, Baker PJ, Wormser GP. False and Misleading Information about Lyme Disease. Am J Med. 2017.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
It is notable that authors of the disputed AJM journal article are the same people who have been targeting Julia Bruzzese, with disastrous results for her and her family. https://on-lyme.org/en/sufferers/lyme-stories/item/260-the-ultimate-lyme-test-julia-s-story
The AJM article cites an American Lyme Disease Foundation paper (authored by Philip Baker), that was published in response to the award-winning Pei-sze Cheng I-Team investigative report on Julia. At the time the segment was airing, Dr. Baker sent copies of the ADLF paper (without permission) to her father’s personal email list of friends and family members.
Both Dr. Gary Wormser and the American Lyme Disease Foundation paper made public claims that, Since Julia’s two-tier tests were negative, it is extremely unlikely that she could even have Lyme disease. Since that time, her family discovered that positive ELISA results were hidden from them by one of the hospitals that she was admitted to. After progressing in her treatment, Julia currently tests positive for Borrelia burgdorferi as well as four additional coinfections including Borrelia Miyamotoi, Tularemia, Bartonella, and Babesia.
In spite of all of the documentation of infection with multiple tick-borne illnesses and demonstrated clear progress in her symptoms, Julia continues to receive insurance denials for her treatment. Extremely suspiciously, the most recent denial from the New York State, lifted phrases word for word from the ADLF paper. New York State has refused to reveal the name of her reviewer.
I hope the family requests that New York States Attorney General Eric Schneiderman investigate many irregularities in Julia’s insurance denials.
Equally unethically, representatives from the CDC have also attempted to interfere in Julia’s care. The attempted interference in the medical care of a young girl who is clearly fighting for her life by the authors of the AJM opinion piece and the CDC just gives more evidence that they are being blinded by their own dogma and will strike out at anyone who challenges them.
Thank you Dr. Cameron for sharing the letter that I wrote to the editor of the American Journal of Medicine regarding a poorly written biased article. I am grateful that my letter was published. The response of the authors is quite telling.
Their Reply
“Most—if not all—of the issues raised by Greenberg in
regards to our recent article1 have been addressed in detail in
a previous publication in this journal.2 Her concerns with
respect to the work of Berende et al likewise have been
addressed at length in a commentary by Melia and Auwaerter.
Eugene D. Shapiro, MD
Phillip J. Baker, PhD
Gary P. Wormser, MD
There is no question that the authors response was condescending, dismissive, and basically closed off any opportunity for any factual lively scientific discourse that one would expect from a group of scientists. To paraphrase- they said “You are wrong , we answered it already. Go look it up.”
A phrase I heard recently comes to mind: “You are entitled to your own opinion, but not your own facts.
Patients like myself are getting fed up with what seem like semantic arguments: it is active Borreliosis, or is it something else. It’s obvious that something is going on; there is a medical condition that needs treating. By closing off the argument, Shapiro et al. are doing patients a great disservice. They show a remarkable lack of scientific curiosity in why such a large proportion of people with obvious tick bites and EM rashes either fail the 2-tier test or have lingering life-changing symptoms.
A large chunk of patients are respond to antibiotics, but given the current scientific uncertainties, treatment should be based on clinical response. If we can give antibiotics for mild acne, why not give antibiotics to enable people like me to be able to work and live a normal life?