"This all makes for a muddy diagnostic regimen even in regions with a long history of Lyme, but with Canada’s exposure still comparatively new, many doctors may not even suspect Lyme in an ailing patient. And even when they do, there are often systemic and cultural barriers to testing, according to Jim Wilson, the founder of the Canadian Lyme Disease Foundation, who contracted Lyme disease many years ago and was very sick for several years before he found effective treatment. After his daughter contracted Lyme in 2001, he decided to found the organization to raise awareness of the issue.
Many medical doctors feel caught in a Catch-22, Wilson suggested — simultaneously discouraged from making a diagnosis on clinical symptoms alone, and limited to laboratory tests that are often inconclusive. Doctors that diagnose and treat Lyme disease effectively — through a mixture of educated clinical diagnosis and testing — “have been policed out of business,” Wilson says, leaving them hesitant to diagnose and treat the disease at all. This leaves many patients with little recourse but to turn elsewhere — including seeking diagnosis via for-profit labs the U.S...
Of course, some patients and advocates argue that the current guidelines are not based on the best evidence and that they are beholden to powerful interests. Disability insurance companies in Canada often claim that chronic Lyme disease does not exist, for example, so that they don’t have to pay disability claims. Such companies sometimes hire infectious disease doctors as experts to testify in court to deny claims, Wilson explains.
At the same time, many insurance companies deny life insurance to potential clients who have had a Lyme disease diagnosis, says Janet Sperling, a Lyme disease researcher at University of Alberta."
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