Lyme Disease Treatment Guidelines Strike Out: An Editorial
There is growing evidence supporting the existence and severity of chronic manifestations of Lyme disease despite recent treatment guidelines for Lyme disease. Treatment guidelines influence how physicians diagnose and treat patients across the United States, and when they fail to reflect emerging clinical evidence, patients with persistent symptoms may be overlooked.
Studies have found that at least 1 in 3 patients treated for Lyme disease remain ill years after treatment. Furthermore, four clinical trials sponsored by the National Institutes of Health (NIH) documented persistent symptoms following treatment for Lyme disease. [2–6]
Treating Lyme disease, whether in the early or chronic stages of illness, can be complex and challenging. Many of the Lyme disease patients in the NIH trials remained ill for years despite treatment. In fact, researchers reported that chronic Lyme disease patients’ quality of life “was equivalent to that of patients with congestive heart failure; pain levels were similar to those of post-surgical patients and fatigue was on par with that seen in multiple sclerosis,” according to the International Lyme and Associated Diseases Society’s (ILADS) 2014 evidence-based guidelines.
Meanwhile, studies from Johns Hopkins indicated that patients diagnosed with post-treatment Lyme disease syndrome (PTLDS) continued to be ill following antibiotic treatment, even when therapy had been started early. Patients frequently reported severe fatigue, pain, cognitive complaints, and poor functional status.
“Studies using rodent and primate models have suggested that the persistence of bacteria and/or spirochetal antigens after antibiotic therapy may drive disease,” explains Aucott from Johns Hopkins University School of Medicine.
Concerns About the Term PTLDS
The term post-treatment Lyme disease syndrome (PTLDS) is often used to describe patients who remain ill after antibiotic treatment. While the term acknowledges the persistence of symptoms, it does not explain their underlying cause.
Some clinicians are concerned that the PTLDS label may unintentionally narrow the investigation of possible mechanisms responsible for ongoing illness. In clinical practice, patients with persistent symptoms may have a variety of contributing factors including persistent infection, immune activation, antigen persistence, neurologic injury, or unrecognized coinfections.
Limiting the discussion to a single syndrome risks oversimplifying a complex clinical problem. Continued research is needed to better understand the biological mechanisms responsible for persistent Lyme disease symptoms.
[bctt tweet=”IDSA’s proposed Lyme disease guidelines dismiss psychiatric, behavioral and neurodevelopmental manifestations due to Lyme disease.” username=”DrDanielCameron”]
Guidelines Recognize Only One Chronic Manifestation
The Infectious Diseases Society of America (IDSA) guideline committee is again developing treatment guidelines for Lyme disease. This time, the committee includes representatives from a broader group of organizations.
However, the proposed Lyme disease treatment guidelines appear to recognize the existence and severity of only one chronic manifestation of Lyme disease — post-treatment Lyme arthritis.
According to the draft guideline:
“In patients who have failed one course of oral antibiotics and one course of IV antibiotics, we suggest referral to a rheumatologist or other trained specialist for consideration of the use of disease-modifying anti-rheumatic drugs (DMARDs), biologic agents, intra-articular steroids, or arthroscopic synovectomy.”
Proving Causality: Lyme Disease and Chronic Manifestations
Establishing causality in complex diseases can take decades. In many areas of medicine, clinicians must interpret evolving evidence before definitive causal proof is universally accepted.
The proposed guidelines do not accept the existence of many other chronic manifestations of Lyme disease, particularly those involving psychiatric, behavioral, or neurodevelopmental symptoms.
The guideline committee states:
- “No studies suggest a convincing causal association between Lyme disease and any specific psychiatric conditions.”
- “There are no data to support a causal relationship between tick-borne infections and childhood developmental delay or behavioral disorders.”
This argument is similar to debates in earlier public health controversies. When the link between smoking and lung cancer was first proposed, epidemiologic studies had already demonstrated strong associations between smoking and several serious illnesses.
“Even as the epidemiological evidence mounted, the tobacco industry implemented a wide-ranging strategy to question the credibility of epidemiological evidence,” writes Glass from Johns Hopkins University in the Annual Review of Public Health. [15]
Glass describes how “the manufacture and dissemination of doubt” became a strategy used by stakeholders whose interests were threatened by causal findings.
Some critics argue that the Lyme disease treatment guideline debate reflects similar tensions when emerging clinical observations challenge established frameworks.
The Broad Range of Chronic Lyme Presentations
Patients initially identified as having chronic Lyme disease may experience a broad range of clinical presentations including:
- Lyme encephalopathy [8]
- Lyme neuropathy [8]
- Neuropsychiatric Lyme disease [9]
- Pediatric neuropsychiatric disorders – PANS [10]
- Lyme carditis [11]
- Autonomic dysfunction – POTS [12]
- Post-treatment Lyme fatigue – post-Lyme disease [6]
- Neuropathic pain [13]
- Persistent symptoms after Lyme disease [5]
- Lyme disease with coinfections (e.g., Babesia) [14]
Editorial Perspective
The debate over Lyme disease treatment guidelines highlights a broader challenge in medicine: how clinicians should respond when patient experiences, emerging research, and guideline recommendations diverge.
Guidelines are designed to summarize available evidence, but they cannot always capture the complexity seen in clinical practice. Many physicians continue to encounter patients with persistent symptoms that remain difficult to explain within current guideline frameworks.
If the current draft guidelines are finalized without acknowledging the full spectrum of chronic Lyme manifestations, they may once again fall short for both physicians in clinical practice and the patients they serve.
Editor’s note: Dr. Cameron is the first author of the 2004 and 2014 International Lyme and Associated Diseases Society (ILADS) treatment guidelines, which recognize the existence and severity of chronic Lyme disease.
Related Articles:
Dismissing chronic Lyme disease for somatic symptom disorder
New study by guidelines author dismisses risk of chronic Lyme disease
B. burgdorferi persister cells survive attacks by antibiotics
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
This makes it more important that a national program of education in schools and communities be implemented by the Departments of Health and Departments of Education be developed and implemented at all levels on a constant curriculum schedule. Tick bite prevention is a constant risk for all the population. The intensity and frequency of education requirements can be apportioned according to patient population geographic concentration. In this case an ounce of prevention is worth a ton of cure. It was true for HIV. Its true for Lyme Disease.