The Triple Helix @ UChicago

Spring 2014

"Chronic Lyme Disease and the Standard of Medical Care" by Lauren Petersen


The controversy surrounding chronic Lyme disease is perhaps as chronic as the disease itself. Ever since Lyme disease was discovered in the 1970s, it has been debated why ten to twenty percent of patients who are treated with a two- to four-week course of recommended antibiotics continue to experience signs of illness. Following treatment, these patients experience symptoms such as fatigue, pain, or joint and muscle aches for extensive periods of time, sometimes lasting decades.1 This condition is known as “chronic Lyme disease” by those who believe the symptoms are due to occult, persistent infection; to those who believe that the symptoms have other etiologies, the condition is known as “Post-treatment Lyme Disease Syndrome.” The uncertainty surrounding this illness has led to one of the greatest controversies in medicine: should patients receive additional courses of antibiotics for these persistent symptoms? Both physicians and patients are baffled by contradictory information regarding chronic antibiotic treatment in medical literature and especially on the internet. 

At the center of this controversy are four double-blind placebo controlled trials that suggest the inefficacy of continued treatment through intravenous or oral antibiotics. These placebo-controlled studies, in which patients were randomized to unknowingly receive either antibiotics or a placebo, ultimately showed that the antibiotics did not improve symptoms any more than a placebo.[2] Furthermore, these studies showed a large placebo effect, for upwards of one third of the patients reported improvement with just a placebo. These studies additionally showed that extended use of antibiotics beyond the recommended treatment was associated with serious side effects, which have been borne out by other case reports of patients who experienced treatment complications such as infection and even death.[3] However, advocates of long-term antibiotic treatments claim that these placebo-controlled trials are flawed, basing evidence off of the multiple instances in which patients have seemingly improved with treatment.[4] 

Based on results of the placebo-controlled trials, the Infectious Disease Society of America (IDSA), which represents the vast majority of infectious disease physicians in the United States, created diagnostic and treatment guidelines that warn against prescribing long-term antibiotics.[6] These guidelines, endorsed by the National Institutes of Health and the Centers for Disease Control and Prevention, have set the standard of care for the treatment of persistent symptoms due to Lyme disease; thus, nearly all hospitals and doctors adhere to them. These guidelines also serve as the foundation for medical insurance coverage, and consequently insurance companies often refuse to pay for long-term antibiotic treatments that can cost more than $5,000 a month.[6] Furthermore, some doctors that diagnose chronic Lyme disease and treat patients are occasionally investigated and sanctioned by state medical boards.[6] 

Frustrated by the perceived inflexibility of the IDSA guidelines and the resultant lack of insurance coverage for long-term treatment, many ill patients have banded together to form the International Lyme and Associated Diseases Society. This society, also known as ILADS, adheres to a broader definition of Lyme disease and encourages more research to be done in diagnosis and transmission.[7] Additionally, ILADS has formed its own chronic Lyme disease guidelines, which states that chronic Lyme disease can be diagnosed based on symptoms alone rather than clinical data. These guidelines also suggest that antibiotics can be given for indefinite periods without clinical criteria for treatment success, stating only that treatment with antibiotics can be carried out through "clinical judgment.”[7] These guidelines would therefore allow doctors to prescribe long-term antibiotics more readily and without penalty. Groups of patients have organized to support the use of long-term antibiotic therapy, and in this role they aim to protect chronic Lyme disease doctors against medical board sanctioning as well as to encourage treatment coverage from insurance companies.[6]

The competing IDSA and ILADS guidelines raise questions regarding what constitutes the standard of medical care and what should happen to those who deviate from this standard of care. To resolve this issue for chronic Lyme disease, advocacy by ILADS supporters has led to passage of state laws preventing physicians from being sanctioned for prescribing long-term antibiotics or even forcing physicians to tell patients that accepted Lyme diagnostic tests are unreliable. This movement was taken one step further when the Connecticut Attorney General sued the IDSA and charged that its Lyme disease guidelines inhibited alternative medical practices.[4] This lawsuit was eventually settled without any admission of wrongdoing and with an agreement to have a review of the IDSA guidelines by an independent panel of experts, who ultimately upheld the original guidelines. While most would agree that the courts or politicians should not dictate the standard of medical care, the chronic Lyme disease controversy points to the difficulties in interpreting medical science and translating it to a universally accepted practice of medicine. To some, chronic Lyme disease antibiotic treatment is a modern and dangerous form of snake oil; to others, it is a misunderstood miracle; to all, confusion abounds. 


[1] Centers for Disease Control and Prevention. 2014. “Post-Treatment Lyme Disease Syndrome.” Last modified February 24. 
[2] Mark Klempner, Linden Hu, Janine Evans, Christopher Schmid, Gary Johnson, Richard Trevino, DeLona Norton, Lois Levy, Diane Wall, John McCall, Mark Kosinski, and Arthur Weinstein. 2001. “Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease.” The New England Journal of Medicine 345:85-92. Accessed May 10, 2014. 
[3] Robin Patel, Karen Grogg, William Edwards, Alan Wright, and Nina Schwenk. 2000. “Death from Inappropriate Therapy for Lyme Disease.” Clinical Infectious Diseases 31:4: 1107-1109. Accessed May 10, 2014. 
[4] Paul Auwaerter, Johan Bakken, Raymond Dattwyler, Stephen Dumler, John Halperin, Edward McSweegan, Robert Nadelman, Susan O’Connell, Sunil K Sood, Arthur Weinstein, and Gary Wormser. 2009. “Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism.” Journal of Medical Ethics 37:68-73. Accessed May 10, 2014.  
[5] Paul Lantos, William Charini, Gerald Medoff, Manuel Moro, David Mushatt, Jeffrey Parsonnet, John Sanders, and Carol Baker. 2010. “Final Report of the Lyme Disease Review Panel of the Infectious Diseases Society of America.” Clinical Infectious Diseases 51:1-5. Accessed May 10, 2014. 
[6] Daley, Beth. 2013. “Drawing the Lines in the Lyme Disease Battle.” The Boston Globe, June 2. Accessed May 10, 2014. 
[7] International Lyme and Associated Diseases Society. “Top Ten Tips to Prevent Chronic Lyme Disease.” Accessed May 10, 2014. Image credit (public domain): Chaos. 6 June 2004. “Various Pills”. Wikimedia Commons. 6 June 2004.

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