In the Lymelight: Law and Clinical Practice Guidelines

Susan J.D. Ronn


South Med J. 2009;102(6):626-630. 

In This Article

Lyme and Medical Politicking

In the United States, the spirochete Borrelia burgdorferi, carried by infected ticks, causes Lyme disease. The Centers for Disease Control and Prevention (CDC) states that Lyme is the most common vector-borne disease in the country, with approximately 20,000 new cases reported each year. The CDC admits to problems with reporting, however, and states that actual cases of the disease may number 6-12 times higher in endemic regions.[4]

The two groups agree that early Lyme disease presents with flu-like symptoms, sometimes accompanied by a characteristic skin rash known as erythema migrans. They also agree that the spirochete can cause joint, neurologic, and cardiac problems. Past this, however, the two viewpoints diverge. Disagreement surrounds testing, diagnosis, treatment, and in particular, the existence of chronic Lyme disease.[5] Even the symptomatology of Lyme disease is in dispute. IDSA claims the science is firmly on the side of their guidelines' prescribed testing and treatment regimen and that chronic Lyme does not exist. ILADS claims the spirochete can sometimes elude existing testing mechanisms and also may survive in the host's body despite short-term treatment.

Formal complaints have been filed and investigations launched against physicians treating Lyme disease on both sides of the debate. The two sides have battled in clinical trials, journals, press releases, letters, and testimony over state and federal legislation, court rooms, websites, and most recently, within the pages of their respective clinical practice guidelines.[6] Less than a year after IDSA's revised guidelines were published, the New England Journal of Medicine arguably fanned the flames of dissent by publishing an article refuting the existence of chronic Lyme disease. The article was written by many of IDSA's panelists.[7] In response, ILADS issued a press release, questioning the journal's motives.

Both IDSA and ILADS wrote letters to members of the US Congress regarding identical bills introduced in both houses, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007, S. 1708 and HR 741. Neither bill progressed out of committee by the end of 2008, thereby killing the bills.

This debate over Lyme disease, often acrimonious, has left some physicians and patients struggling with the fallout of no clear path of diagnosis or treatment for what many view as a complex, little-understood illness. With both camps asserting the science is on their side, the politics of the disease threaten proper diagnosis and treatment, and the advancement of the science itself is at stake.

IDSA has enjoyed the upper hand in the battle in that the CDC, among other organizations such as the National Institutes of Health (NIH) and the Institute of Medicine (IOM),[8] has accepted the society's guidelines as the status quo. IDSA's guidelines are posted on the CDC website. ILADS' are not. The CDC website only recently did away with its link to an article warning against inaccurate information on the Internet about Lyme disease, discussing the websites of ILADS and Lyme advocacy groups, such as the Lyme Disease Association.[9] In terms of the diagnosis and treatment of Lyme disease, IDSA's guidelines guide clinical practice for most, while ILAD's guidelines guide the minority - physicians referred to as LLMDs (Lyme-literate medical doctors).


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