On a regular basis PWCs return to me with a new diagnosis of Lyme Disease. My main concern in such a situation is whether the diagnosis is accurate and treatment appropriate.
Lyme Disease can be a trigger for CFS/ME just as can EBV, HHV6, and other infections [Steere AC, JAMA 1993]. That’s why we request Lyme titers on all new patients with classical CFS/ME symptoms.
How do you know if you really have Lyme Disease ( LD)? LD is a clinical diagnosis based on exposure in an endemic area, a history of embedded tick, or a tick bite followed by a typical rash or symptoms. Ninety percent of persons with LD will have a positive screening test, which should be followed by a more specific test, the Westrern Blot test [www.arupconsult.com/Topics/LymeDisease.html ]. If the diagnosis is confirmed by the Western Blot test, then 21 to 28 days of antibiotic therapy is indicated to kill off the causative organism, Borrelia burgdorferi.
Untreated Lyme Disease may lead to symptoms almost identical to CFS/ME [Gaudino EA, Arch Neurol 1997], so most CFS and Lyme experts consider Borrelia to be one of many triggers for CFS/ME. There is no convincing evidence that long term antibiotic therapy or alternative therapies are effective in treating late Lyme Disease [ Feder HM, NEJM 2007].
When patients are desperate or slow to improve from CFS/ME they frequently seek second opinions, which may lead to consideration of LD. Sadly, many “experts” disregard venerable institutions such as the Centers for Disease Control, National Institutes of Health, the World Health Organization, and others, relying instead on unreliable or unvalidated testing to make a diagnosis of LD. There are labs that tout their Lyme testing as superior or more accurate than FDA- and CDC-approved testing. In fact, they may produce many false positive results [Klempner MS, Amer J Med 2001, Hurely D, NY Times, 8/23/2005, forbes.com/forbes/2007/0312/096, www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htm ]. Patients frequently cling to these erroneous results and submit themselves to unnecessary, costly, and sometimes dangerous treatments. Perhaps even worse, when these treatments do not work patients again feel discouraged, deceived, and disappointed.
For these reasons we, at Hunter-Hopkins Center, implore our patients to provide medical notes and lab results to us or a reputable infectious disease specialist for review before accepting a Lyme Disease diagnosis and embarking on therapy.