Lyme Disease: When Symptoms Don’t Improve

Four Predominant Categories Associated with Chronic Lyme Disease

Category 1: Symptoms of unknown cause, with no evidence of Borrelia burgdorferi infection

Category 2: A well-defined illness unrelated to B. burgdorferi infection

Category 3: Symptoms of unknown cause, with antibodies against B. burgdorferi but no history of objective clinical findings that are consistent with Lyme disease

Category 4: Symptoms of unknown cause after antibiotic therapy and resolution of an objective manifestation of Lyme disease

Only patients with category 4 disease have post-Lyme disease symptoms. Data from three double-blind, randomized, placebo-controlled trials have shown that there is substantial risk, with little or no benefit, associated with additional antibiotic treatment.

Most patients presumed to have chronic Lyme are in category 1 or 2; antibiotic therapy in these patients is not warranted.

Source: N Engl J Med 2007;357:50-58

Copyright © 2007 Massachusetts Medical Society. All rights reserved.

Risks Associated with Long-term Antibiotic Therapy

Long-term antibiotic therapy for patients with purported chronic Lyme disease or post-Lyme disease symptoms can cause considerable harm for patients and public health, such as:

• adverse reactions following ceftriaxone administration, including life-threatening anaphylaxis and biliary complications requiring cholecystectomy
• infection of the intravenous catheter, including Candidemia, which can result in death
• fostering the development of other drug-resistant infections

The vast majority of patients with Lyme disease can be treated with a short course of antibiotic therapy and will recover fully. But for the small percentage of patients whose symptoms don’t improve (roughly 5 percent by some estimates), what is an ID clinician to do?

Noted experts Allen C. Steere, MD, FIDSA, of Harvard Medical School and Gary P. Wormser, MD, FIDSA, of New York Medical College offered their advice during a Meet–the-Professor session on Lyme disease. Both speakers were authors of IDSA’s 2006 practice guidelines on Lyme disease as well as a recent review article in the New England Journal of Medicineon “A Critical Appraisal of ‘Chronic Lyme Disease.’” (N Engl J Med 2007;357:50-58)

Different terms have been used to describe patients who continue to experience symptoms (see sidebar). According to Drs. Steere and Wormser, the term “chronic Lyme disease,” which implies chronic infection with Borrelia burgdorferi, is a misnomer, and the use of prolonged antibiotic treatments is unwarranted and can cause patients significant harm. Nevertheless, physicians and laypeople who believe in the existence of chronic Lyme disease have been vocal in championing their cause.

In patients with newly diagnosed Lyme disease, Dr. Wormser noted that it’s important to provide anticipatory counseling, so that patients understand that it may take several weeks to months for symptoms to resolve. Patients should be told that the internet contains many sources of misinformation. Many patients with post-Lyme disease symptoms fear that their symptoms indicate that they have a chronic infection that could cause neurologic damage, he said. It’s important to address those concerns.

The speakers offered the following advice to clinicians who are referred a patient who is purported to have chronic Lyme disease:

• Review the symptoms, tick exposure, and lab data.
• Emphasize the non-specific nature of symptoms.
• Discuss the risks of unnecessary antibiotic treatment (see sidebar).
• Thoroughly evaluate the patient for other medical conditions that could explain the symptoms.
• If there is no specific treatment indicated, provide emotional support and symptomatic management
• Explain in clear and empathetic language that there is no medication such as an antibiotic to cure the condition.

Caring for a patient who has no objective manifestations of an infection can be frustrating for an ID clinician. Still, Dr. Wormser urged his audience, “Don’t abandon these patients.” Doing so leaves them vulnerable to misinformation and a treatment plan that is expensive, unnecessary, and potentially dangerous.

Post-Lyme or Chronic Lyme?

post-Lyme disease symptoms: fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms when experienced by patients despite resolution of the objective manifestations of infection byBorrelia burgdorferi after antibiotic treatment. Seen in a minority of patients.

post-Lyme disease syndrome: symptoms above lasting longer than six months

chronic Lyme disease: The term has been applied to patients in a variety of contexts, including those with objective late manifestations (such as arthritis) and those with purely subjective complaints after antibiotic therapy. It is also applied to those with unexplained subjective symptoms without credible laboratory evidence for Borrelia burgdorferiinfection irrespective of exposure to an endemic area. The term has also been applied to patients with other identifiable conditions such as multiple sclerosis.

Source: G. Wormser

Also see IDSA resources on Lyme disease atwww.idsociety.org/lymedisease.htm.

Slides from this session and many others from IDSA 2007 are available online.

Audio files, including a full-conference CD-ROM, areavailable for purchase from Sound Images.

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