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!

Global's 16x9 digs a little deeper

On Sunday, October 11th, Global TV's investigative current affairs program, 16x9: The Bigger Picture, aired a story titled "Lyme Disease Lepers". Finally some coverage is being given to the IDSA guidelines controversy and the related intimidation of Canadian Lyme disease doctors -- the reasons why more and more Canadian doctors are afraid to treat this devastating disease. Well done Global!

The story features Lyme disease physicians Dr. Ernie Murakami (who was forced to retire in 2008 by the BC College of Physicians for treating Chronic Lyme patients), and Dr. Jozef Krop (currently being investigated by the Ontario College of Physicians and Surgeons for treating Chronic Lyme disease, in spite of the fact there has not been one single patient complaint against him). The story also tells of the difficulties Lyme patients have in getting a timely diagnosis (delayed diagnosis is a major contributor to developing serious and debilitating Chronic Lyme disease), as related by Lyme patients Robert Manten and Janet Mitchell, due to unreliable Canadian tests and lack of training and awareness amongst Canadian doctors.

Dr. Nicholas Ogden, of the Public Health Agency of Canada (PHAC), makes the following statement on camera: "The interpretation done in some private laboratories in the USA are too liberal and therefore they capture as being positive a lot of people who don't have Lyme disease." This just doesn't jive with findings of the Canadian Lyme Disease Foundation, which has tracked thousands of Lyme patients across the country who were diagnosed with a positive Western Blot test from reputable and fully certified laboratories in the US -- tests interpreted according to stringent CDC criteria -- the majority of these same patients had negative Canadian Lyme tests.

Such statements from Dr. Ogden are clearly a distraction from the real issue that Canadian Lyme tests fail to detect the vast majority of Lyme patients in our country, with devastating health consequences for patients whose diagnosis is therefore delayed. And why do these diagnosed patients respond positively to treatment if, as Dr. Ogden asserts, a lot of them don't really have Lyme disease in the first place? Hmmmm. If you ask one of the handful of experienced Lyme doctors in our country, the Canadian tests don't just fail to detect the disease in its early stages either -- for most people, these tests are not worth the paper they are printed on for any stage of the disease. The PHAC is due some feedback on this subject -- here is a link to the PHAC contact page for our Chief Public Health Officer.



The 16x9 website gives you an opportunity to have your say as well (see Add Your Comments at the bottom of their Lyme Disease Lepers story page). Please keep the comments coming! -- let Global know you appreciate their coverage of Lyme issues and that more is needed to raise awareness.

If you have not already written Ontario's Minister of Health (see recent post Your help is urgently needed!), please take a minute to do so. Our letters have now been updated with the details of our new Health Minister (the Honourable Deborah Matthews). We want to keep these issues front and centre. Together we are making a difference!

Burlington screening of "Under Our Skin"

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Note that there is limited parking available on the church property. Bridgman St (adjacent to the church, off of New St) is a good choice for street parking.
We hope to begin the film promptly, given its length, so please come early and make yourself comfortable!

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Back by popular demand! Lyme Action Group is pleased to partner with Sunday Evening Forum to bring another screening of the award-winning Lyme documentary Under Our Skin to Burlington, Ontario.

The Untold Story of Lyme Disease and our Health System
A groundbreaking documentary explores the human, medical and political dimensions of Lyme disease - an emerging epidemic destroying countless lives. This powerful film exposes a broken health care and medical research system unable to cope with a growing terror under our skin. It will open your eyes!

There is No Medicine for Someone Like You
Lyme Disease, caused by bacteria transmitted by an infected tick, manifests with symptoms of virtually all known neurological and autoimmune disorders. The American Centers for Disease Control estimates over 200,000 new cases each year in the USA (more than AIDS and West Nile combined) - the vast majority of which are in close proximity to Ontario. An increasing number of people have the disease in Ontario, and many more may have it, but have either not been diagnosed or have been misdiagnosed.

Date: Sunday November 8, 2009
Time: 7:00 pm
Location: Burlington Baptist Church
2225 New Street, Burlington
(west of Guelph Line - click here for a map)

A suggested donation of $5 at the door is appreciated, with net proceeds supporting the advocacy work of Lyme Action Group. Refreshments will be available following the event. The running time for the film is 103 minutes. Following the film, a question and discussion period will be facilitated by Rob Manten. Robert is a local Lyme patient and founding member of Lyme Action Group.

Here is a film trailer:


For more information about this film, including additional film excerpts, please visit Open Eye Pictures online. Any questions about the event can be directed to Lyme Action Group.

Sunday Evening Forum is a community forum to discuss current issues. For more information, visit the Burlington Baptist Church online. An event poster is available, which you can download and distribute. Please join us November 8th!