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A most distinctive and disturbing epidemic is growing in America, and few can agree on what it is and how it should be tracked. Lyme Disease (LD) is caused by the tick-borne spirochete Borrelia burgdorferi (Bb) and is acknowledged as the most common vector borne disease in the United States. According to a recent CDC report, 17,730 Lyme Disease (LD) cases were reported in year 2000 and there have been more than 100,000 cases overall (ref) – but there is a common perception among LD activists, LD patients, and students of this disease that LD is underreported by a factor of 10 or more. Furthermore, the most debilitating form of LD, the persistent or chronic form, often referred to as neuroborreliosis, is debunked, or at least felt to be grossly over-diagnosed by powerful factions in academic medicine. Unfortunately, this attitude filters down to most treating physicians, especially in a comparatively low prevalence region for acute LD like the Carolinas, whose physicians thereby tend to trivialize or deny the existence of persistent LD, or neuroborreliosis.
At the Jemsek Specialty Clinic, we deal almost exclusively with late manifestations of Bb and associated pathogens, and so lines of debate are seriously impaired and the polemics will be hopelessly blurred until the adversarial parties agree to discuss the same disease. We are fond of saying “chronic is chronic, chronic is portable and moves to the Carolinas, and chronic numbers in this illness accumulate as primary infections from Bb continue, often unrecognized”.
For surveillance purposes, the CDC employs a definition for LD as the presence of a physician-diagnosed erythema migrans (EM) rash > 5 cm in diameter or at least one manifestation of musculoskeletal, neurologic, or cardiovascular disease with laboratory confirmation of Bb infection (ref). A number of confounding factors, ranging from physician or patient failure to recognize EM, to inaccurate laboratory testing, serve to disguise the true magnitude of this epidemic. In addition, there is growing evidence that coinfections with other microbes, such as Bartonella henselae, Babesia microti, and Ehrlichia chafeensis may occur in as many as 25% of recognized LD cases (ref). Coinfection with any of these pathogens tends to confound the clinical course and present difficult treatment issues. In our experience, patients with a coinfected state tend to have more difficult and complicated illnesses.
Dr. Jemsek draws many parallels between the early days of his more than 23 years of HIV/AIDS experience and his more recent exposure to LD sufferers…e.g. indifference and a propensity for clinging to dogma from his peers, and a lack of scientific data on which to base diagnosis and therapy.