I am always thrilled to see patients walk into my office with classic signs and symptoms of chronic Lyme disease. I am not always that lucky. More patients have been presenting with atypical syndromes. A 40ish year old man has complained of muscle pain and fatigue after limited physical activity. This has increased over the past one year. He has been a life long athlete. Every time he exercises his muscle enzymes(CPK) become very elevated. After some rest the enzyme levels return to normal. Recently, he has experienced low grade, persistent pain in his muscles without weakness. He has also experienced some fatigue and numbness and tingling.
There are well documented cases of Lyme disease causing myositis (muscle disease).
His Lyme WB shows 4 IgG bands and meets the IgeneX criteria for Lyme exposure. His excellent neurologist has done a thorough job of working him up. He has been unable to establish a diagnosis. He has referred the patient to Johns Hopkins for a muscle biopsy. He asked the neurologist if his symptoms might be due to Lyme disease. He showed the WB report to the neurologist.
The neurologist with whom I have been friends for over 20 years said "Dr (me) is a nice guy, but I don't what is wrong with him. Over the past several years he thinks that everyone has Lyme disease." The neurologist informed the patient that he has only 4 positive bands and that the CDC required 5 bands for a positive diagnosis- case closed- he does not have Lyme disease.
In 2001 the "Lyme Disease Initiative of 2001" was introduced in the House of Representatives. H.R. 1254 was passed. The stated goal was "To establish a program to provide for a reduction in the incidence and prevalence of Lyme disease." The Bill called for the creation of a LYME DISEASE TASKFORCE (sec. 4). Based on this bill a task force was created. Public Law 107-116 was passed by the senate(11/06/01) and was signed into law by president George Bush on January 10, 2002. I quote a portion of that bill:
The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition. While the CDC does state that 'this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for the clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product(test) development, medical licensing hearings and other legal cases. The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing the definition.
Not only have these recommendations been ignored, but the misuse of the CDC test has become more ingrained in medical institutions and academic medical practice.
Neurologists may point to the new guidelines developed by the American Academy of Neurology. These guidelines are a repackaged version of the disputed IDSA guidelines. Three coauthors, including the lead author were also authors of the IDSA guidelines!
I do not know if this patients signs and symptoms are related to ongoing infection with Lyme disease- but it is a distinct possibility. Unfortunately suffering patients frequently find themselves caught in the cross fire between the two waring factions. I am afraid it is ultimately the patients who suffer in this situation. I will request that the muscle biopsy specimen have a good Lyme PCR and sensitive culture on special media. Unfortunately, such requests from me have always been ignored.