Monday, July 20, 2009

An ID Doctor speaks about the IDSA / Lyme

People who are unfamiliar with Lyme disease, and the medical and political controversy that now surrounds it, frequently ask the question, "How could this possibly be?" In the spirit of a-picture's-worth-a-thousand-words, this column will be uncharacteristically brief. The following video is courtesy of the renowned Dr. Joe Jemsek, of the Jemsek Specialty Clinic. Dr. Jemsek is speaking at the Into the Light, Lyme Disease Awareness Gala, which was held in March 2009. Enjoy.

Ok, just a few comments... ;-) to add a Canadian context. How does this American tragedy affect us on this side of the border? Well, you take Health Canada's bogus statistics for Lyme disease and our seriously flawed Lyme tests. Then add the IDSA's 2006 Lyme treatment guidelines, which declares Chronic Lyme disease to be all in our heads. Add to that the CDC announcement that Lyme is an "emerging epidemic" in the US. What do you get? At best, you get a confused Canadian medical system that's faced with some conflicting input. At its worst, you get Canada's regulatory Medical Colleges declaring war on the handful of Canadian doctors actively involved with treating Lyme disease -- and the Colleges are not answerable to anyone for their obscene actions.

At least 3 cases of heavy-handed actions by Medical Colleges have been publicized to date. First was the now late Dr. Philip Williams, whose treatment of Lyme disease was restricted by the CPSO in 2004. Then in early 2008, the CPSBC forced Canada's Lyme disease guru, Dr. Ernie Murakami, into retirement with the threat of removing his licence. Most recently, Dr. Jozef Krop had the files of 20 of his Lyme patients seized by CPSO investigators in October 2008 -- that investigation is ongoing in spite of the fact there had not been one patient complaint against him. Sound like the sort of environment that will encourage doctors to seriously consider Lyme disease in their differential diagnosis?

Lyme disease established in New Brunswick

More Lyme in the news. This piece aired on CBC New Brunswick on July 15, 2009.

In the northern Saint John community of Millidgeville, an established breeding population of ticks was identified last spring. That means higher numbers of younger nymph ticks will be present -- about the size of a poppy seed, they are much harder to see than adult ticks, but capable of carrying and transmitting Lyme disease.

Limited surveillance has revealed that 20% of the Millidgeville-area ticks are positive carriers of the Lyme bacteria. That's twice the supposed national average of 10%. Such limited surveillance has been done throughout our country, with most of that being passive surveillance (when ticks are voluntarily submitted by veterinarians and doctors for analysis), it's difficult to put much credence in these numbers -- passive surveillance will, at the best of times, tend to significantly underestimate the real numbers. The reality is, in spite of our health authorities' continuing characterization of Lyme as a new and emerging illness in Canada, everywhere they look they are finding it! Ask the patients that have been misdiagnosed and battling this illness for decades -- this disease has long been present in every province of our country.

And it's all well and good that continued efforts go into studying tick populations (a similar study to the one in Millidgeville is taking place this summer in the Wainfleet Bog area of the Niagara Peninsula of Ontario). But when will action be taken to improve the quality of Lyme testing available to Canadians? According to the handful of Lyme-literate physicians across the country, Canada's Lyme tests are not worth the paper they are printed on. Very few Lyme patients test positive with Canada's Lyme tests -- most are forced to pay out-of-pocket for tests from specialized tick-borne illness labs in the US. Early detection and treatment is absolutely critical in successfully treating this potentially devastating illness -- that early detection is next to impossible right now in Canada. Delayed diagnosis greatly increases the chance of developing serious chronic illness.

When will action be taken to ensure the safety of Canada's blood supply? Canada is one of the few western nations that does not currently screen its blood supply for Lyme disease! Several published studies have demonstrated the ability of Lyme bacteria to survive in treated blood products for up to 48 days.

When will action be taken to better train our doctors, so that patients are not faced with the all-too-frequent "we don't have Lyme disease here"? This happened in a southern Ontario community just a few weeks ago! And that was in spite of a Public Health Advisory about Lyme disease issued a few months prior in the same region. Our doctors are our first line of defence -- and those defences are currently down!

When will action be taken to provide meaningful public awareness? The public continues to be largely unaware of the risks for Lyme disease. While truckloads of money went into publicity campaigns for West Nile Virus -- a disease that impacts in the order of 1,000 people a year in North America -- next to nothing has been done to raise awareness of Lyme disease. The CDC now estimates in excess of 200,000 new cases of Lyme disease annually. And do you know where the vast majority of those cases are? In close proximity to the borders of Manitoba, Ontario, Quebec, New Brunswick and Nova Scotia!

So the numbers in this news report suggest that 1 in 10 ticks in our country are carrying Lyme bacteria. The list of known endemic areas continues to increase in length. The recent Canadian Medical Association Journal article clearly documents the presence of ticks throughout the country. And yet Health Canada continues to report bogus numbers of only about 50 cases of Lyme a year in Canada. But of course those numbers are based on Canada's bogus tests. There are thousands of Lyme patients across the country that are not counted in Canada's stats for Lyme because their Canadian tests were negative. When will Health Canada give its collective head a shake? When will our medical community get past these numbers? -- treat the patients, not the labs.

If you or someone you know has been on the Great Canadian Lyme Adventure, please make sure your elected representatives know about it. Write to your local paper. Write your Minister of Health. The status quo is simply not good enough. Something's gotta change.

Ten days and counting...