I recently read CMAJ’s interview1 with Dr. David Patrick, who used words like “junk science” and “pseudoscience” regarding the diagnosis and treatment of Lyme disease. I worked as a consultant physician at the University of British Columbia’s Complex Chronic Diseases Program from 2013 to 2014, a clinic formed to improve testing and treatment for patients with Lyme disease, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis.
The issue in Lyme disease treatment is that there is inadequate research to lend evidence-based support to any guidelines. Certainly there is evidence that Borrelia burgdorferi persists in dogs, rats, monkeys, people and even in the test tube after antibiotic treatments.2–5
The National Institute of Allergy and Infectious Diseases (NIAID) states on its website that “additional research is needed and continues to be supported by NIAID to learn more about persistent infection in animal models and its potential implication for human disease.”6 In the absence of good evidence-based guidelines, patients are floundering and physicians are afraid to treat.
A review of the evidence7, using the GRADE system, shows all the evidence that exists (and all that is lacking) at each stage of tick bite, erythema migrans rash and chronic Lyme disease. What I appreciate about this review is that it explores the role of patient preference at each stage of Lyme disease, where clear evidence is lacking as to treatment duration.
Physicians have a duty to explore concerns about risks of long-term use of an antibiotic. In each case, we must look at the risk–benefit ratio. This is not new to the treatment of Lyme disease. In Lyme disease, we must analyze, upon tick-bite exposure, the risk of a tick carrying the disease, and of not treating a documented erythema migrans rash long enough. We must consider whether a patient is more concerned about Lyme disease prevention or about the risks of unnecessary antibiotics and adverse reactions.
It is messy work, and the research needs to be done. In the meantime, physicians are in the trenches and patients are sick. The US Centers for Disease Control and Prevention estimate 300 000 US cases per year of Lyme disease, and we cannot be so naive as to think this disease stops at the US border. In 2007, only 13 cases were officially reported in British Columbia. However, a survey by the BC Centre for Disease Control in 2007 showed that 148 physician respondents (8.8% of their sample) had diagnosed a total of 221 cases of Lyme disease in the preceding year.8 If 221 cases were diagnosed by such a small sample of physicians, why were only 13 cases officially reported?
We are dramatically underestimating the number of cases of Lyme disease, and I am glad to see that Bill C-442 is proceeding so that we can improve research into testing and treatment of this disease. We are at a stage with chronic Lyme disease similar to where we were with HIV in the 1990s, when clinicians had to use clinical judgment to treat those who were sick while awaiting quality evidence to be published. I am hoping that Bill C-442, which has the support of the Canadian Medical Association, will allow this to happen nationally.