May is Lyme awareness month

So what are you doing to celebrate Lyme awareness month?

Hopefully you have found (or are organizing!) an awareness event in your neighbourhood -- the possibilities are endless; put up ribbons, distribute information, host a screening of Under Our Skin, or organize a Lyme lecture. Please drop us a line if we can help spread the word for your event.

Here is info on what's happening in the Fort Erie, Ontario area, just down the road from scenic Niagara Falls and across the border from Buffalo, New York. There will be four free screenings of Under Our Skin during the month of May!

Three of the screenings will be at the Fort Erie Public Library:
Centennial Branch -- 136 Gilmore Road
Saturday May 1st at 1:00pm

Centennial Branch -- 136 Gilmore Road
Tuesday May 4th at 6:00pm

Crystal Ridge Branch -- 89 Ridge Road South
Wednesday May 12th at 6:00pm

The fourth screening will be held at The Boutique Movie Theatre:
320 Ridge Road, Ridgeway
Monday May 24th at 7:00pm.

For more information or to reserve seating, please contact Melisa. Here is a downloadable poster for the event. Spread the word! For additional info about this award-winning documentary film, including film trailers and excerpts, please visit Under Our Skin online.

IDSA abandons Chronic Lyme patients

In its final report released today, the IDSA's Lyme Disease Review Panel has concluded that no pressing changes need be made to the 2006 Lyme guidelines. The IDSA has tragically failed the Lyme community in this determination. Citing a lack of controlled trials and high-quality clinical studies, the Panel placed little value on the extensive submissions by the International Lyme and Associated Diseases Society (ILADS) and other supporting information.

This excerpt from the final report provides a good summary of the IDSA's position:

"This conclusion [i.e. that there is no significant benefit to long-term antibiotic therapy] was reached despite the large volume of case reports, case series, anecdotes, and patient testimonials reviewed that attested to perceived clinical improvement during antibiotic therapy. Such evidence is by its nature uncontrolled and highly subject to selection and reporting biases. In many published case reports patients did not receive initial Lyme disease therapy consistent with the current standard of care, so it was impossible to be sure that shorter duration therapy had failed. In some cases the diagnosis of Lyme disease was doubtful based on clinical presentations consistent with other illnesses. Some patients were abnormal hosts and not representative of the general population. Many reports included patients whose diagnosis was made before the implementation of the CDC recommendation for 2-tier serological testing, and were therefore based on less stringent criteria. Finally, caution should be used in extrapolating results from European studies to North American patients, due to the well-established microbiological and clinical distinctions in Lyme borreliosis on the two continents."

The IDSA has missed an opportunity here. Rather than foster an environment in the medical and research communities where perceived gaps in information might reasonably be filled, the IDSA has adamantly cemented its position that Chronic Lyme does not exist. In spite of the IDSA, these gaps in information are gradually being filled. But how many lives will be destroyed in the meantime, while we are constrained by inadequate diagnostic tools and physicians who are for all intents and purposes discouraged from using their clinical judgment. We can speculate who is served by this report. It most certainly is not the best interest of patients.

If you can bear to read it, you can download the final report in its entirety or access it online from the IDSA website. The IDSA welcomes your comments.

The Connecticut Attorney General's Office has already issued a brief statement indicating it "will carefully and comprehensively assess the final report". Look forward to that. In the meantime, you can let the AG know what's on your mind by email.

This is a sad day indeed.

Spring cleaning

Another spring season is upon us. Yes, that time of year when Lyme patients in the northern hemisphere renew the desire to shake off the shackles of our hibernatory albeit involuntary habituation.

Last year really was extraordinary in terms of media attention to issues of Lyme disease. Let's keep that momentum building! We need to continue to press our media and government, both locally and nationally, lest they forget how this devastating disease is impacting not only each one of us, but also countless other Canadians who become infected each year and are abandoned with inadequate access to testing and treatment. And as additional States go in the direction of legislative protection for Lyme-literate doctors, ensuring patient access to treatment options, we push on towards the day when the first of our provinces will take such a bold step. Will it be yours?

And what else may lie in store for us this year? No one knows for sure. But there are already some exciting entries in the calendar.

While snowbirds shivered in the south during recent months, many areas of Canada enjoyed a mild winter. But just as several States reported a significant increase in tick populations last year, there are indications we may experience a tick explosion of our own in 2010, as noted in this recent article in Manitoba's Winnipeg Free Press.

During the March Total Health Show in Toronto, raw milk advocate Michael Schmidt (Glencolton Farms) and constitutional lawyer Shawn Buckley (National Health Products Protection Association) reminded us that if we value our freedoms, we must make our voices heard. This is no less true for the Lyme community. April's Vitality Magazine includes a related article on the theme "Saying NO to Corporate Healthcare Fraud".

Just last week, an article in the Calgary Herald highlighted the problem of Lyme patients being misdiagnosed with MS and other chronic conditions. The article focused on the recent thesis of Winnipeg researcher Kathleen Crang.

Also last week, Bryan Allen's AM940 talk show focused on Lyme disease issues in Canada (you can download the 35 MB mp3 file here). The 2-hour program included interviews with Jim Wilson (CanLyme President), the renowned Dr. Ernie Murakami (Dr. E. Murakami Centre for Lyme Research, Education & Assistance), Rossana Magnotta (Magnotta Winery President who lost her husband to Lyme-related complications in December), and Lyme patients from across Canada. You can send a note of thanks to Bryan by email.

Looking forward... well first backwards. Remember last year's review of the IDSA Lyme guidelines? Yes that review -- the one that came out of the Connecticut Attorney General's investigation finding several conflicts of interest in the original guidelines preparation. Feedback on the review process was originally expected by the end of 2009. Then it was early 2010. The delay may be related in part to recent allegations by the Attorney General's office that the IDSA has failed to abide by the agreed voting procedure in assessing individual recommendations of the original guidelines. Amidst little fanfare, the IDSA website's Guidelines Review section recently issued a more definitive statement: its final report will be issued by the end of April. While unspecified, we take this to mean 2010... Please stay tuned.

Canada's foremost consumer advocate, Dale Goldhawk, will devote his Wednesday radio program to Canada's Lyme disease crisis. Remember to tune in to Goldhawk Fights Back on AM740 or listen online this Wednesday, April 21st, from 11:00am to 1:00pm.
***update*** You can download the 18 MB mp3 file from the radio broadcast here. Please drop a brief thank-you message to Dale Goldhawk and encourage him to cover this subject matter further.

And May, in many jurisdictions of the world, is recognized as Lyme disease awareness month. While Canada has shamefully failed to offer official recognition to this important issue to date, let's not let that stop us. Keep an eye out for local events in your community!

As examples of new life are springing all around us, here is a wish that each of us will be reinvigorated to push on. Let's continue our "tireless" (OK, this is obviously a very relative word for the Lyme community) pursuit of truth and justice, against the tyrannical status quo of the medical establishment and our government representatives.

"Never doubt that a small group of committed people can change the world. Indeed, that is all that ever has." Anthropologist Margaret Mead

Total Health 10 -- "Our Health, Our Planet"

It's that time of year again -- time for the 2010 Total Health Show! "Celebrating 33 years of striving to make a difference in the world", this year's event is sure to have something for everyone. The event takes place at the Metro Toronto Convention Centre from the 12th to 14th of March.

Of particular interest for the Lyme community is a presentation by medical science author Helke Ferrie. Her lecture on Saturday March 13th, room 203, from 3:00-5:00pm is titled Ending Denial -- The Lyme and Chronic Disease Epidemic in Canada. And this is also the title of a book to be launched at the Health Show. The book, which is a compilation of writing from doctors, patients and politicians, should prove to be a powerful and valuable tool as we continue to communicate our message to the powers that be. Do not miss this event. Be sure to visit Helke at the KOS Publishing exhibition booth 215. Members of Lyme Action Group will be her guests at the booth. Please stop by and say hi!

Something is rotten in the state of Denmark...

Ok, altogether now... exhale.

No, this isn't a commentary on the increasingly long list of climate change scandals hitting the world by storm since the recent gathering of politicos pretending to be scientists in Copenhagen. Although there is something disturbingly ironic (well, several things actually) about COP15 taking place in the land of vikings and fairy tales. Just remember, folks, "The Medieval Warm Period doth not a hockey stick make, my dearest Horatio." Well, it went something like that. Btw, for a less reverent COP15 postmortem (perhaps one of the more intelligent deconstructions), check out Dr. Seuss at Copenhagen.

And another deep inhalation.... and out.

Where were we? Oh yes. If you, like many others, have been holding your breath waiting for the much anticipated results of the IDSA's new-and-improved Lyme guidelines review panel, apparently we should stop. Last year, the IDSA website advised we could expect feedback from the committee around the end of the year (2009). Then the ETA was changed to shortly after the first of the year (2010). But here we are in February, and the silence is deafening.

Or at least it was.

It seems the new-and-improved panel is up to its same-old-same-old tricks. Correspondence from the Connecticut Attorney General on the 1st of February reveals the panel has failed to abide by the terms of the agreement reached following the antitrust investigation concluded in 2008. It appears the panel manipulated the voting procedures in order to favour the status quo of the existing guidelines. The Attorney General is not amused. A package, including a preamble from Lorraine Johnson's LymePolicyWonk blog, the Attorney General's letter (begins on page 3), an IDSA letter outlining their commitment to the agreed-upon review procedures (begins on page 7), and the new guidelines Action Plan (begins on page 9), can be accessed here.

The Attorney General's letter indicates that the panel has thus far denied any wrongdoing (now there's a familiar refrain!), claiming full compliance with the Action Plan. And so the showdown stands. This may well explain the lack of any public response from the panel to date.

Elsewhere in cyberspace, there is some interesting reading on the website of the American Lyme Disease Foundation (ALDF). Much like the IPCC's one-sided "debate" on climate science, the ALDF has traditionally been an excellent place to visit for a very one-sided view of the world of Lyme disease (i.e. the narrow IDSA perspective). In fact, the gentleman who headed the 2006 IDSA Lyme guidelines panel is a member of the ALDF Board of Directors. In that context, it was somewhat disconcerting to read the following under the heading of "Treatment":

"Although treatment approaches for patients with late-stage LD have become a matter of considerable debate, many physicians and the Infectious Disease Society of America recognize that, in some cases, several courses of either oral or IV (depending on the symptoms presented) antibiotic treatment may be indicated."

Since when does the IDSA recognize the benefit of several courses of antibiotics?? But before you break out the champagne, they then go on to say there is no scientific evidence to support speculation that long-term antibiotic therapy is beneficial, while specifically warning of adverse side effects from long-term IV therapy.

Amidst this confusing crosstalk, could this be a sign the IDSA is preparing to soften its position?

In the meantime, keep breathing.

W5: "Out of the Wild"

Are you one of the few Canadians who has not watched W5's recent episode devoted to Lyme disease in Canada? If so, you are in luck. The piece, which originally aired on CTV on November 14th, is titled "Out of the Wild: Why some Canadian doctors are misdiagnosing a crippling disease caused by a shape-shifting superbug -- until it's too late".

You can watch the Out of the Wild episode from the CTV video library. The written story can also be found on the W5 website, "W5: Why are crippling Lyme disease cases being misdiagnosed".

This investigative look at Lyme disease across our country focuses on the experiences of 3 patients: Nicole Bottles of Victoria, Ed Sperling of Calgary, and David Leggett of Toronto. Nicole, whose Lyme disease has caused severe memory loss, pain and diminished mobility, has had to find medical support in the United States -- she is still being treated with long-term antibiotics and slowly making progress. Ed's unexplained Lyme symptoms grew so severe, he ended up in a psychiatric hospital and his mother was suspected of causing her son's mystery illness. Fortunately Ed was eventually treated with long-term antibiotics and has successfully recovered -- he is now studying engineering at the University of Alberta. David, a healthy, active Toronto high school principal, was struck down with the disease in 2004 after a camping trip. His doctors flatly denied the possibility of Lyme. The delay in his diagnosis has left him debilitated and bed-ridden. He is unfortunately no longer able to tolerate the aggressive antibiotic therapy that might otherwise have improved his condition.

"In a country like ours, with vast stretches of wilderness, you might think that an illness that can be caught in the outdoors would be a priority for doctors to diagnose." W5's conclusion about the threat of Lyme disease to public health? The medical community has failed to take it seriously. "Thousands of Canadians who are afflicted are often told there is nothing wrong with them, that they're delusional, or psychotic". Lyme disease is most successfully and economically treated when it is caught early. Yet such a timely diagnosis is next to impossible in Canada today, given the lack of reliable testing and insufficient awareness amongst many in our medical community.

"When confronted with symptoms that don't make sense to them, many [Canadian doctors] are likely to turn to what they think is the next likely scenario: their patient is crazy."

Professor George Chaconas, a University of Calgary researcher who has spent the last decade studying the Lyme bacteria, explains the pathogen's ability to evade our immune system and cause a wide variety of symptoms depending on what organ system the infection is affecting. The discrepancy between reported Lyme cases in Canada and US states bordering our country is astounding: while there are little more than 100 cases reported across our entire country, the number is closer to 15,000 in the border states. "The ticks don't carry passports, they don't stop at the border. To think that we don't have Lyme disease in Canada, I think is not realistic."

Jim Wilson, president of the Canadian Lyme Disease Foundation, sums it up this way: "The enemy here is ignorance, it's arrogance...". A Lyme patient himself, he sees hundreds of patients across the country driven to desperation by "woefully uninformed doctors".

Ontario's Associate Chief Medical Officer, Dr. David Williams, acknowledges that our doctors have been slow to realize Lyme is a problem. When pushed by W5 correspondent Paula Todd to explain how that problem should be resolved, Dr. Williams' response led her to conclude it is simply "not a priority" for our medical establishment.

If you think our medical community doesn't have its priorities straight with regard to Lyme disease, why not speak up about it? To get you started, here are links for the Ontario Minister of Health and our Federal Minister of Health. Be sure to contact your own elected representatives as well.

Thank you to the W5 team for their outstanding work, including CTV's Richard O'Regan, Maria Dartis, Paula Todd, and Sandie Rinaldo. Please drop W5 an email to let them know you appreciate their excellent work on this story. And please encourage them to follow up on other Lyme issues: the safety of Canada's blood supply, why our doctors are not better trained to diagnose and treat Lyme, why Canada's medical Colleges are aggressively persecuting the handful of experienced Lyme doctors in our country, and why our health officials continue to rely on a bogus test and misleading statistics.

Now it seems not everyone holds W5's award-winning journalistic efforts in the same high regard. This press release was issued recently by the Association of Medical Microbiology and Infectious Disease Canada (AMMI). The AMMI considers it unfortunate that the W5 story "misleads and confuses the public on this important health issue and besmirches the earnest efforts of physicians and scientists who want to help patients with [Lyme disease]...". Well... Nicole, Ed, and David, and countless other Lyme patients across our country, may have something to say about those earnest efforts too.

The AMMI's position is oddly reminiscent of that from the Infectious Diseases Society of America (IDSA). The IDSA's scientifically indefensible position that Chronic Lyme disease does not even exist (see earlier post IDSA hearing on Lyme - Washington, DC) was so extraordinary, having blatantly disregarded the substantial body of medical research supporting Chronic Lyme, that the Attorney General of Connecticut launched the historic antitrust investigation of the IDSA to find out what on earth was going on. That investigation found many procedural irregularities and conflicts of interest amongst the guideline panelists. It resulted in a completely new panel being assembled and a thorough review of those guidelines. We are hopeful for some constructive feedback from the new IDSA guidelines panel by year end.

The Canadian Lyme Disease Foundation also had a few things so say about the AMMI's recent press release. For your reading pleasure, you can find their rebuttal here.

From the AMMI website: "AMMI Canada exists as an organization with the primary function of representing the broad interests of professionals dealing with human microbiology and infectious disease in Canada." Hmmm... ok. But who is representing the interests of Canada's Lyme patients?

CTV's W5 covers Lyme in Canada

Program your DVRs, TiVos and VCRs!

W5, the investigative journalism program of CTV, is airing an in-depth story on Lyme disease in Canada this Saturday November 14th at 7pm EST. The 3o-minute segment will feature Canadians from across the country impacted by this devastating disease.

"Out of the wild: Why some Canadian doctors are misdiagnosing a crippling disease caused by a shape-shifting superbug -- until it's too late."

Here is a video preview for the Lyme segment on this episode of W5, featuring Toronto Lyme patient David Leggett.

The program will rebroadcast on Sunday November 15th at 12pm EST.

Don't miss it!