Don’t Get Ticked Off Over Chronic Lyme Disease

There is a segment of the medical profession that considers Lyme disease as a prevalent cause of chronic fatigue and pain—even in the absence of evidence of Lyme infection. What is going on here?

Many of these individuals reject the criteria for diagnosing Lyme disease as put forth by the Centers for Disease Control and Prevention (CDC) and the Infectious Diseases Society of America (IDSA). These health professionals use the term “chronic Lyme disease” to explain symptoms such as chronic fatigue, chronic pain, and cognitive dysfunction in the patients who come to their clinics. Other symptoms noted on chronic Lyme internet sites include reproductive organ pain, back pain, sleep difficulties and moodiness; these are symptoms you just won’t find when you consult the Lyme disease web pages addressing diagnosis for the CDC or the IDSA.

Yet, while most of the patients labeled with chronic Lyme disease do not fulfill, say, the IDSA criteria for the diagnosis of Lyme disease, there are physicians and others who administer intravenous antibiotics for extended periods of time over and over again, despite the absence of randomized controlled trials to support such prolonged therapy; and in spite of any concerns the medical community at large has about the risk of the development of resistant strains of bacteria in the face of repeated and unnecessary exposure to antibiotic therapy.

Lyme disease is caused by the bacteria, Borrelia burgdorferi, introduced to its victims by the eastern deer tick known as Ixodes dammini. The disease can manifest as inflamed joints, inflamed heart tissue, and can cause neurologic disease in 10% to 15% of patients. Common manifestations seen in neurologic disease include meningitis, cranial nerve inflammation, inflammation of peripheral nerves leading to the inability to fully use a limb, and painful inflammation of nerve roots as they branch off from the spinal cord. The diagnosis of neurologic disease requires objective evidence of nervous system damage, and must be differentiated from psychiatric disorders and metabolic disorders—both of which can occur in the absence of obvious neurologic damage or infection. Treatment with antibiotics over a two to four week period generally results in microbiologic cure, and in most cases oral regimens are just as effective as their more expensive intravenous counterparts. While some symptoms may persist after antibiotic treatment, including chronic fatigue and concomitant cognitive or memory deficit, the data, according to a 2011 article in “Current Infectious Disease Reports,” do not suggest that these symptoms are responsive to further antibiotic therapy.

According to a 2007 “New England Journal of Medicine” article on “chronic Lyme disease,” prolonged antibiotic therapy appears to do nothing for nonspecific symptoms such as fatigue, night sweats, sore throat, stiff neck, joint and muscle pain, depression, sleep disturbance, poor concentration, and depression—regardless of whether Lyme disease is common in the environment of the patient. In fact, 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 for patients who have the aforementioned chronic subjective symptoms after they have been administered appropriate treatment for an episode of Lyme disease.

Actually, antibiotic therapy can be extremely harmful to patients treated for chronic Lyme disease: One can see life-threatening allergic reactions, liver toxicity, severe yeast infections, and intravenous catheter-associated adverse events.

Of course, what does someone—patient or provider—who is wedded to the existence of chronic Lyme disease and the prolonged antibiotic therapy of that phenomenon do when confronted with not just a lack of evidence for the treatment of a possibly non-existent medical condition, but several negative published studies concluding that treatment is futile and possibly dangerous? Well, you turn to anecdotal reports and uncontrolled studies that support your beliefs.

It should be remembered, however, that response to treatment should not be considered as an undeniable indicator that a diagnosis is accurate, nor proof that the antibiotic is having an effect because it is killing bacteria. As you might imagine, many patients will feel better over time; and controlled trials indicate that nearly 40% of patients with post-Lyme disease symptoms have a positive response to placebo. (If you are not familiar with the placebo effect, that is a considerable effect.) Also, some antibiotics have significant anti-inflammatory effects: for some, the administration of certain antibiotics is akin to taking Celebrex or Motrin, which can be great pain relievers. Finally, uncontrolled trials and anecdotal case reports often do not use standardized definitions of the disease they claim to be studying, and their criteria for interpreting laboratory results might not involve validated methodology.

An empathic health care provider will need to explain the problems with the theory of chronic Lyme disease, and do what should be done whenever a patient comes in for the evaluation of chronic pain and fatigue: provide support, embark on a thorough medical evaluation, and gently advise them that the proffering of cures when there are none can result in further medical problems if certain cures are accepted. Successful interactions between patients and physicians will hopefully allow the patients to keep both their health, and their money.