Elizabeth May, the leader of the Green Party of Canada has been pushing for the adoption of a national Lyme disease strategy in Canada. Her private member's bill, Bill C-442, outlines the urgent need for more up-to-date testing and treatment. In as much as acute Lyme disease, infection by the bacteria Borrelia borgdorferi*, is a serious and sometimes life threatening infection, the legislation also seems to promote the existence of a syndrome called "chronic Lyme disease": a bogus diagnosis for medically unexplained symptoms that might spin May into another embarrassing scientific mishap.
Lyme disease is diagnosed in the doctor's office by the presence of a "bull's-eye" rash called erythema migrans and the high probability of exposure to the blacklegged tick that carries the Lyme disease bacteria: the cork-screw shaped B. borgdorferi. These signs are often found along with flu-like symptoms, including joint pain, and can sometimes progress to serious heart and nerve problems. The good news is this bacteria responds well to antibiotics and the person is often cured of the illness easily.
Diagnosis can be difficult without the presence of the bull's-eye rash, and the clinical findings should be confirmed with two different tests: an ELISA test and a more specific Western Blot. If the diagnosis is missed, which can happen when the rash is not present and the person just looks like they have the flu, Lyme disease can have some serious consequences later, like dangerous brain swelling. This late-stage Lyme disease can also be cured if it is caught, but it may take months to years for the serious symptoms to appear, and diagnosis at that point is difficult because the presence of a rash or exposure to the tick is difficult to establish.
While Bill-442 makes some good points about climate change and the potential spread of the ticks that carry Lyme, it also contains curious language that has raised some eyebrows in the science advocacy community:
"Whereas the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness;"
It is hard to imagine how guidelines in Canada are restricting the treatment of acute Lyme disease. Once it is diagnosed with the standard tests, it is pretty easily treatable and once the bacteria are cleared, most people are cured of their symptoms. Granted, May's bill does make a defensible point about making sure we have the tools to diagnose the correct species of bacterium, and on this I won't argue. Physicians do need to have a high incidence of suspicion for Lyme in areas where the disease exists and you have a patient in the summer with flu, but this is a matter of education.
Additionally, up to 13% of people with confirmed Lyme disease develop a condition called "post-Lyme disease syndrome" after the initial infection has been cured. This involves at least 6 months to a year or more of inflammatory-type symptoms, like joint pain, but this is where our knowledge ends and chronic Lyme disease begins.
The symptoms of chronic Lyme disease (CLD) have sometimes been included in the list of the post-Lyme syndrome and those who choose to use the term "chronic Lyme disease" argue that post-Lyme is CLD. The problem is, it is relatively easy to diagnosis a case of post-Lyme syndrome because we have evidence that the person had Lyme to begin with. CLD is often diagnosed without evidence of an original infection and using unvalidated, some say bogus, bacterial cultures or urinary "challenge" tests when the real tests come back negative.
When you are exposed to a foreign invader, like a bacterium, the body produces antibodies that allow the immune system to tag the invader and target it for removal. These antibodies, once created, persist for many years. The ELISA or "enzyme-linked immunosorbant assay" is the first-line test for the Lyme bacteria, and it works by taking a sample of the person's blood, exposing it to a known protein on the bacteria called an antigen and then testing the resulting sample for the antigen-antibody pairs. This is not an exact test, and can result in false-positive tests, so a second test called a Western Blot is performed to confirm the presence of the bacterium in the blood.
These tests are not fool-proof, but they are the only ones we have that have been validated to confirm a clinical diagnosis of Lyme disease. That has not stopped some physicians and naturopaths from diagnosing people with CLD who have otherwise medically unexplained symptoms, many of which are vague and not Lyme specific. When the ELISA and Western Blot come back negative, which would mean they don't have Lyme, they send samples to other labs that charge hundreds of dollars for tests that the FDA and the CDC in the US have called bogus.
CLD should be considered in the same category as IEI-EMF or electro-hypersensitivity, or multiple-chemical sensitivity: they are not recognized diseases and other causes for these symptoms should be sought. Instead, to treat CLD a potentially dangerous protocol using very protracted courses of antibiotics that has shown to make no difference beyond placebo is used. In an era of super-bugs and overuse of antibiotics, any treatment that includes indiscriminate use of antibiotics should be heavily scrutinized for its validity.
This is the problem with the rhetoric in Bill-442 that suggests that doctors are "abandoning people with a treatable illness." May and the Green Party are dangerously close to promoting the diagnosis of CLD, and even if this was not their attempt, a look at the comments on her website shows that this is the way that the CLD community has taken it. The CLD promoters have also managed to manufacture some sort of conspiracy that includes doctors, specialists, insurance companies and the medical industry that defies close scrutiny. How does a pharmaceutical or specialist benefit from telling you you do not have a disease and don't need months of drugs to fix it? Where is the evidence that doctors are colluding with insurance companies? It is obvious that the alt-med practitioners like this clinic and the labs selling the bogus tests are the ones really benefiting financially.
For these reasons, Elizabeth May should be sure that she has the science on her side and clarify her position before she finds herself promoting the very dubious diagnosis of chronic Lyme disease.
*in North America. Other species of bacteria can cause the disease in Europe and sometimes people present with the disease in Canada caused by these other species that they were exposed to on trips abroad
Note: Special thanks to Dr. Harriet Hall and her article on chronic Lyme disease on Science Based Medicine.
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