Lyme disease awareness

Well the month of May has come and gone – Lyme awareness month is over for another year. We hope you found a way to mark this occasion and raise awareness in your community.

And what a month it's been! Looking back over recent weeks, there were some important happenings of note.

The province of Ontario has quietly launched a Lyme awareness campaign called Let's Target Lyme!, encouraging Ontarians to “be tick smart”. Why quietly? Who knows. But hopefully they will turn up the volume soon. Thank you to an observant listener who happened across a gardening radio call-in show in the Ottawa area where the campaign was briefly mentioned. There is some really good information on the campaign website, both for the public and the medical community – we commend the Ministry of Health for making this information available. Unfortunately, the website does continue to promote Canada's seriously flawed testing protocol. What the province has completely failed to recognize, is that the result will be catastrophic for countless Ontarians who will be misdiagnosed or have a delayed diagnosis during this prime tick season, adding untold numbers to the ballooning ranks of the chronically ill in our province. Hey! Province of Ontario, if you're listening: Lyme disease is most successfully and economically treated when it is diagnosed early. Canada's current testing protocol, combined with the abysmal lack of awareness in the medical community, makes a timely diagnosis next to impossible. That's got to change.

Lyme awareness is being highlighted in many areas of the province and beyond. Here is a sampling. If you see something in your area, please let us know.

• Niagara Region

• Region of Waterloo (Fight the Bite!)

• Chattham-Kent in partnership with Rondeau Provincial Park (Lyme Disease: Reduce the Risk, Target Ticks!)

• Province of Alberta (Albertans warned)

• The Pitch Pine Post, Parks Canada (a Spring 2010 publication for the St. Lawrence Islands region, print only) – related content on the Park's Canada website (Ticks and Your Health).

• City of Hamilton (Expanded program includes Lyme disease)
  

Nationally, a big thank you to CTV's W5 for recently rebroadcasting their excellent investigative journalism piece from November 2009 (Out of the Wild).

Last year's successful Lyme awareness radio spots, produced by CanLyme and Magnotta Wines, are back on the airwaves for another season. Here is an excerpt from a recent Magnotta press release, which provides an excellent summary of the current problem in Ontario and throughout the country:

“One of the top ten misdiagnosed diseases in the world which is now found in all Canadian provinces, Lyme disease is a bacterial infection caused by the bite of an infected tick that causes flu-like symptoms in the beginning. Currently affecting millions of people, Lyme disease is curable when properly diagnosed and treated early. However, when misdiagnosed, Lyme becomes debilitating, chronic and sometimes irreversible, even fatal. This multi-organ infection can attack a person’s heart, brain, bones, muscles, digestive system, skin, eyesight, hearing and more. It can cause symptoms that mimic other diseases resulting in a prolonged misdiagnosis.”

John Scott, Ontario's celebrated tick researcher, has coauthored a recently published paper in the June 2010 Journal of Vector Ecology. The paper highlights some very important observations, which help us understand why Canada's Lyme testing protocol is such a colossal waste of time. It is now well-documented that there are many subspecies of Borrelia present in Canada. More importantly, numerous subspecies are known (and have been known for some time!) to be important causative agents of Lyme disease infections in humans. Would you like to hazard a guess as to how many of those subspecies are detected by the Canadian tests? Come on, now – pick a number.... Well, if you chose a number higher than 1, you are sorely mistaken. That's right – Canada's protocol tests for one and only one of the Borrelia subspecies (in research circles, that species is known affectionately as B31). So while our policy makers continue to parrot the party line that we have nothing to worry about, that Canada's tests are based on the best available scientific evidence, the reality is that our protocol is seriously flawed and misses the vast majority of Lyme cases in our country.

Just last week, news broke that Ontario Ombudsman André Marin has been unanimously approved by all parties for another 5-year term as Ontario's watchdog. This, we hope, is good news for the Lyme community. Late last year, Lyme Action formally filed a complaint with the Ombudsman regarding the province's lack of appropriate action on Lyme issues. We have corresponded with every single sitting MPP in our province, and met in person with several of them. There was a Lyme awareness rally at Queen's Park last September. A petition with more than 1,400 signatures was presented in the Ontario Legislature. We met with various persons within the Ontario Ministry of Health. None of it moved the Minister of Health to take action. We hope a sober second look by our now officially-reinstated Ombudsman may precipitate something more substantive from our policy makers.

Here are a few coming events you won't want to miss.

For those of you in and around Toronto, Helke Ferrie will deliver a Lyme lecture at The Big Carrot Health Food Store on Danforth this Thursday June 10^th at 7pm. A regular contributor to Vitality Magazine, Helke was the Editor of our book project, Ending Denial. Copies of our new book will be on sale at this event -- no shipping charges!

For those of you in the Golden Horseshoe region and thereabouts, don't miss the next meeting of the Lyme Disease Association of Ontario (LDAO). Scheduled for Saturday June 12^th in Acton, the special guest speaker will cover the subject of Medical and Disability Tax Credits – come and learn everything you need to know to maximize your tax credits for next year. For more info, please contact LDAO President Court Steggles. Note that LDAO is a membership-based research and support group. Annual fees are $40, and new members are welcome at any meeting. Full details below -- you can also download this meeting invite, complete with map. Ending Denial will also be available at this LDAO meeting.

LDAO Spring Meeting
Saturday June 12, 2010
1:30pm – 3:30pm
Trinity United Church
70 Mill Street East, Acton

And finally, a big thank you to everyone supporting us through continuing sales of our new book Ending Denial. This will be a powerful tool to communicate with our policy makers throughout Canada. We have already got it in the hands of every single MPP in Ontario. And that's just for starters – your support will help us do much more. For a great overview of the book, see May's Vitality Magazine column by Helke Ferrie.

Wishing you all good health – together we are making a difference!

Ending Denial

And what are we doing to mark Lyme disease awareness month, you may ask? Well we are launching a book! We are now accepting orders for our new book, Ending Denial - The Lyme Disease Epidemic: A Canadian Public Health Disaster (front cover pictured at left; click for larger image).

Canadians are routinely told by their doctors that Lyme does not exist in Canada and that there is no such thing as its chronic form – its most devastating form, also known as “the great imitator”. The few Canadian doctors actively involved in diagnosing and treating Lyme are frequently persecuted by their licensing authorities when treating Chronic Lyme cases according to international standards; the Canadian Blood Services do not even screen for Lyme (as most other countries do, including the US), and Canada’s Medicare system endorses only tests for Lyme known to produce false negatives -- Canada’s doctors are not permitted to use tests that are internationally known to be reliable. This book examines the reasons for this corruption of medicine and erosion of public health standards in Canada.

"If you or someone you love may be suffering from Lyme disease, this book is for you. If you want to know what's wrong with our health care system, this book is for you. If you have wondered why every conversation about our health care system in Canada and the US ends up being about money, this book is for you. Read it and bear witness to the courage of those who challenge the status quo and truly put patients first. Read it to help protect yourself from the vested interests that have kept doctors and patients in the dark about the true nature of Lyme disease. Read it to understand how blindly doing what the doctor says may be the most dangerous thing you could do for your own health."

-- Terence Young, MP Oakville, Ontario
(author of Death by Prescription)

This project, commissioned by Lyme Action Group, is a compilation of writing from scientific, medical, political, patient and legal contributors. All contributors donated their efforts for the purpose of assembling this Canadian perspective. As a result, we are able to direct all of the proceeds from the sale of Ending Denial toward our ongoing advocacy efforts. Your support in purchasing this book will help us give it the widest possible distribution in Canadian medical and political circles. This 500+ page book is an excellent resource for all Canadians. Consider giving a copy to your doctor. Use it to help educate friends and family. Please donate or recommend it for purchase at your local library.

Individual copies of Ending Denial are available for a donation of $30 or more, plus shipping and handling. Orders of 5 or more books will be discounted 50% (regular shipping and handling charges apply). Shipping and handling charges are $10 for the first book, and $3 for each additional book. All dollar amounts are Canadian funds, for delivery within Canada.

Orders can be made conveniently through our PayPal donation link (right-hand margin), which allows quick and secure payment from major credit cards or your own PayPal account (please specify the number of copies of Ending Denial with your payment -- look for the "Send a message with your donation?" link on the confirmation page while completing your PayPal transaction). You may also send personal cheques made out to "Lyme Action Group" to our mailing address, which is P.O. Box 1095, Mount Albert, Ontario, L0G 1M0. For orders outside of Canada or any other questions, please contact us for further information.

Examples of total order costs, including shipping and handling:
1 copy, $40 or more
2 copies, $73 or more
5 copies, $97 or more

Thank you for your support -- together we are making a difference!

The back cover is pictured at right; click for larger image.

This book is dedicated to:
Dr. Joseph Kucan, 1946-2009. Dr. Kucan was the driving force that made the Lyme Action Group of Ontario a reality. His warmth, humanity, insight, determination, and strength inspired all of us who struggle with the burden of Lyme disease and we all benefited from his compassion and inspiration.

Gabe Magnotta, 1949-2009. Gabe Magnotta, an entrepreneur in the wine industry, was strong enough to take on Ontario's liquor control board and win, but he lost his battle against Lyme disease. His family and his equally determined wife Rossana will not let his death have been in vain.

And to the doctors, who continue to have the courage to treat Chronic Lyme patients in defiance of the political and medical odds.

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.