Chronic Lyme disease presents challenge for physicians, patients

BOSTON — Physicians must learn how to manage patients who blame medically unexplained symptoms on chronic Lyme disease — a condition with evidence stacked against its existence, a speaker said here at the 50th Interscience Conference on Antimicrobial Agents and Chemotherapy.

“There is no definition of chronic Lyme disease, which complicates studies on the problem,” said Eugene D. Shapiro, MD, professor of pediatrics at Yale University School of Medicine and Infectious Diseases News Editorial Board member. “Typically, patients themselves conclude that they have chronic Lyme disease and seek a provider who will confirm and treat.”

These patients are generally experiencing nonspecific symptoms associated with Lyme disease, such as fatigue and headache, according to Shapiro. These symptoms, however, are widely prevalent, and they are not usually indicators of infection. Instead, objective signs of Lyme disease generally accompany these vague symptoms, he said.

Additionally, positive tests measuring antibodies against Borrelia burgdorferi do not necessarily denote current Lyme disease activity but possibly indicate prior exposure. In addition, if the pretest probability of Lyme disease is low (because, for example, only vague symptoms are present), a positive test result is almost always a false-positive result, which further complicates diagnosis, Shapiro said.

Also complicating the treatment of these patients are those physicians who have partnered with the International Lyme and Associated Diseases Society (ILADS) — an organization that has dubbed themselves “Lyme literate” and published its own guidelines about long-term treatment of those with chronic Lyme disease, including long-term use of antibiotics.

Shapiro said some of these Lyme-literate physicians will administer antibiotics based on the combination of nonspecific symptoms and evidence of prior infection, which may be as vague as a rash.

Studies indicated that these unexplained symptoms persisted after treatment in 0.5% to 13% of patients. Although these studies did not have controls, other recent research demonstrates no difference between patients treated for Lyme disease and uninfected controls.

Data from five published clinical trials of long-term treatment of patients with chronic Lyme disease suggested a considerable placebo effect, with up to 40% of controls reporting response to therapy. Results indicated that this strategy has no significant benefit but actually causes increased risk and potential for harm, including secondary infections and substantial financial costs.

Shapiro said, however, that simply telling patients that they do not have Lyme disease does not resolve their symptoms and may in fact enhance mistrust between patient and physician.

“Doctors are part of the problem,” he said. “They are very good at treating disease and making diagnoses, but they are not good at managing symptoms without a diagnosis.”

Shapiro also noted that a stigma exists for patients with unexplained symptoms, with research showing that physicians harbor negative feelings about these patients. Moreover, he said the health care system does not compensate physicians for time spent with patients. Therefore, some physicians find it easier to order tests for Lyme disease and treat patients with medically unexplained symptoms.

Yet, inappropriate treatment and diagnosis may mask the real problem.

“Medically unexplained symptoms are common and should be treated seriously, whatever the cause,” Shapiro said. “These patients are usually looking for affirmation, sympathy and concern. Explanations should integrate psychological and biological factors and should provide patients and doctors with a model for managing problems.” – by Melissa Foster

For more information:

Shapiro ED. Chronic Lyme disease: What is it? #569. Presented at: 50th Interscience Conference on Antimicrobial Agents and Chemotherapy; Sept. 12-15, 2010; Boston.

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