An Anniversary But No Celebration

Lyme support ribbons

This year will mark the fifth anniversary of the publication of Rain on a Distant Roof: A Personal Journey Through Lyme Disease in Canada and I'd like to take a few minutes to reflect on what has and, notably, what has not changed about the Lyme disease situation in Canada in the intervening years.

The most important change has to be the slow motion abandonment of the long-held theory that any Lyme disease patient who does not find themselves symptom-free after being treated with a short course of antibiotics must be suffering from an ill-defined autoimmune syndrome that will fade over time. Blaming a syndrome of unknown etiology for ongoing symptoms was a dodgy approach from the get-go. Yet somehow this syndrome became enshrined in the official treatment guidelines for Lyme disease and has held considerable sway in the medical community ever since. Fortunately, that's unlikely to be the case for much longer.

Increasingly resources in Canada and elsewhere are being devoted to identifying novel pathogens that may be driving ongoing symptoms. These pathogens, if and when they are found, would not only explain why Lyme disease sufferers continue to experience symptoms following antibiotic treatment, they would also likely explain persistent Lyme-like symptoms in many Canadians who do not test positive for Lyme disease on standardized tests. Expect to hear more in the coming years about snowshoe hare virus, Jamestown Canyon virus, and many others as researchers attempt to nail down the cause(s) of those mysterious chronic Lyme disease symptoms.

I mentioned standardized testing. While it's true that we continue to be saddled with indirect antibody tests that have not changed significantly since they were first introduced decades ago, Canadian researchers have confirmed that geography plays a crucial role in whether someone tests positive for Lyme disease in this country. Lyme disease advocates have long argued that genetic variations likely negatively impact the ability of standardized tests to identify Lyme infections and it turns out they may be right. According to the report, the farther east someone infected with Lyme bacteria lives, the more likely they will test positive for Lyme disease. The farther west, the less likely they will test positive. This is an important finding that will hopefully one day translate into improved diagnostic testing.

We are also seeing a lot of "firsts" when it comes to identifying different types of borrelia bacteria (species of which causes Lyme disease and relapsing tick fever) in Canada. We have no idea how many different species (or strains of currently known species) will eventually be catalogued, but it has become increasingly clear that our knowledge of the forms of borrelia bacteria living in Canada is staggeringly incomplete. Reports of some of these "firsts" can be found here and here and here. There are (and will continue to be) many more.

Another bright spot has been the dramatic increase in the public's awareness of Lyme disease. This is due in large part to the persistence of Lyme disease advocates and patients in approaching media outlets across Canada. Yet it is notable that public health units in practically every region have finally shown progress in getting the word out about Lyme disease after years of silence, denials, and worse. There is no doubt that tick research detailing the rapid northward expansion of Ixodes ticks throughout much of Canada has played a role in this about-face. Public health units can no longer responsibly claim that Lyme disease infections are not possible within their region when the ticks that carry the disease have been found as far north as the Yukon and locally acquired Lyme infections have been recorded in every province.

Still, it's not all good news. As anyone suffering from chronic Lyme disease can tell you, Canada still doesn't have a workable plan for how to deal with the skyrocketing number of Canadians suffering from the long-term effects of Lyme disease or the persistent Lyme-like symptoms plaguing many people who do not have confirmed cases of Lyme. As a result, Canadians from every province continue to seek treatment through private clinics in the US and Europe or from alternative practitioners in Canada. To make matters worse, there continues to be widespread reports of discrimination by doctors who persist in believing that Lyme disease either does not exist in this country or that those who claim to suffer from it are the victims of some form of mass hysteria.

And I would be remiss if I failed to mention the shabby state of Canada's official Lyme disease statistics, which are an ongoing yet not terribly funny joke. Although everyone from Lyme disease advocates to university researchers to public health authorities agree that the true number of Canadians suffering from Lyme disease is significantly higher than what is being reported, the mainstream media have, for the most part, not yet twigged to this fact. To date nothing concrete has been done to address this sad state of affairs, which continues to negatively impact research initiatives, human health, and public perception.