Lyme Disease Myths

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The Poughkeepsie Journal, presented the Centers for Disease Control and Prevention’s point of view (“Valley View: Long-term antibiotics not warranted for Lyme treatment” June 16), Dr. Lyle Petersen propagates myths about Lyme disease. Let’s examine these myths followed by the facts from the International Lyme and Associated Diseases Society.

Myth No. 1: “Most people with Lyme disease, if diagnosed and treated early, will recover quickly after a short course of antibiotics. Nevertheless, some patients will have persistent symptoms after treatment.”

Fact: Based on a study of more than 4,000 Lyme disease patients, it is clear that a large number of these patients are not “diagnosed and treated early.” They do not notice a tick bite or a “bulls-eye” rash and they do not receive prompt antibiotic therapy. These patients go on to develop chronic Lyme disease with a constellation of life-altering musculoskeletal, neurological and cardiac symptoms that can be devastating. Even worse, they are rejected by the CDC and the infectious disease establishment represented by the Infectious Diseases Society of America because they do not fit the narrow Lyme disease definition.

Myth No. 2: “Laboratory testing is helpful for patients in the later stages of disease when done correctly and performed with proven methods.”

Fact: The Food and Drug Administration-approved commercial laboratory testing for Lyme disease is abysmal; studies have shown that the sensitivity of this testing hovers around 46 percent for later-stage Lyme disease. The commercial tests miss more than half of patients with later-stage Lyme disease and should not be used for diagnostic testing. Yet the CDC and the IDSA continue to promote these inaccurate tests as a way to exclude patients with clinical Lyme disease symptoms.

Myth No. 3: “Although it’s true that standard Lyme disease tests are not sensitive during the first few weeks of illness, these methods are much more sensitive when patients have been infected for a month or more.”

Fact: The myth that commercial Lyme testing is “much more sensitive” in later-stage Lyme disease is based on circular reasoning: patients with later-stage Lyme disease in the few studies claiming increased test sensitivity were selected because they had positive Lyme tests, and then they had positive Lyme tests! This circular reasoning is anti-scientific.

Myth No. 4: “Since ILADS guidelines provide no definition for chronic Lyme disease, anyone with persistent symptoms from nearly any cause can be labeled as having Lyme disease.”

Fact: Because commercial Lyme testing is so inaccurate, physicians must often rely on clinical evidence to diagnose chronic Lyme disease. Several studies have outlined the constellation of musculoskeletal, neurological and cardiac symptoms seen in these patients. Thus Dr. Petersen’s description of these typical clusters of symptoms as “persistent symptoms from nearly any cause” shows a basic lack of understanding of the clinical approach to Lyme disease.

Myth No. 5: “Some advocates of the ILADS guidelines claim that standard testing algorithms are insensitive, instead promoting laboratories that use unpublished, proprietary laboratory methods that have not been validated.”

Fact: As outlined above, “standard testing algorithms” for Lyme disease are insensitive and miss many patients with Lyme disease. In contrast, the tests preferred by ILADS have been validated in large numbers of Lyme patients, and their clinical diagnostic accuracy is appropriate for later-stage Lyme disease. They are much better than the inadequate commercial testing endorsed by the CDC and the IDSA.

Myth No. 6: “Four double-blind, placebo-controlled treatment trials conducted by leading academic centers failed to show lasting benefit of long-term antibiotic therapy in reducing the symptoms of Lyme disease patients with prolonged symptoms.”

Fact: The limited studies alluded to by Dr. Petersen had significant design flaws. Among the problems that invalidate these studies: lack of generalizability, inclusion of patients who had already failed the same treatment, relatively short courses of “long-term” antibiotic therapy, insufficient study power to draw conclusions, and unrealistic outcome expectations. These limited studies were fatally flawed, and cannot be used to exclude longer treatment for patients with chronic Lyme disease. Other studies have shown that these patients may benefit from longer treatment when short-course antibiotic therapy has failed.

Myth No. 7: “While some physicians and treated patients can claim anecdotal success with such therapy, such ‘success’ stories are often very misleading. Even worse, patients have died from this treatment.”

Fact: Many “success” stories have been documented in medical literature. In contrast, Dr. Petersen’s fear-mongering assertion that “patients have died from this treatment” is based largely on anecdotal reports of patients who were poorly supervised, often because infectious disease doctors refused to participate in their care. These doctors wouldn’t hesitate to treat other chronic infections with months to years of antibiotics, considering this treatment necessary and relatively safe. However when it comes to Lyme disease, infectious disease principles go out the window.

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