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"

********************UPDATE*********************

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!

Your help is urgently needed!

As you know, last week at the Wall of Hope event in Toronto, a +1,400-signature petition was submitted to the Ontario Legislature on a number of Lyme-related issues. The government is now required to officially respond to that petition. While this matter is on the Minister's desk, we want to send another clear and strong message to the Minister to let her know what we are thinking. Note that as of earlier this month, we now have a new Health Minister, the Honourable Deborah Matthews -- the letters have been updated to reflect this change.

To that end, Lyme Action has prepared 2 letters that we would like you to send to the Minister. The letters are accessible via the links below in Word format (drop an email to us if you need a different format). Feel free to customize the content of your letters, but be sure to add your own complete name, mailing address and signature before you send it off. The letters can be mailed, cut-and-paste into an email, or faxed.

1. Letter to Ontario Minister of Health re: CPSO
This letter highlights the problem of the College of Physicians and Surgeons of Ontario (CPSO) persecuting Lyme literate doctors. In so doing, the CPSO is interfering with the doctor-patient relationship and threatening our access to treatment. It is written specifically about Dr.Krop (who has not had one single patient complaint against him!), as his investigation is currently before the CPSO. But as you know, this problem impacted Dr. Murakami in BC last year and your doctor could be next!

2. Letter to Ontario Minister of Health re: Bill 171 & Bill 179
Bill 171 deals with mandatory reporting of doctors (by other doctors). We are particularly concerned that the CPSO will misuse the powers of this Bill to persecute doctors involved in using ILADS protocols for treating Lyme, as well as practitioners of alternative and complimentary medicine. Bill 179 proposes to give the Minister further oversight of the CPSO. Given the CPSO's track record in persecuting Lyme doctors, this oversight is long overdue!

Please contact Lyme Action if you have any problems with the above links and we can email the files directly to you. Once you have opened the files linked above, you can save them to your computer by selecting File, Download file as, Word.

Let's make our voices heard on these important issues. You are encouraged to send these letters this week given the time-sensitive nature of both Dr. Krop's investigation and our petition before the Minister.

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

Wall of Hope 2009 - Toronto

Thank you to all who helped to make Thursday's event a success! Here is a sampling of photos received from attendees. Thanks to those who have sent them in. Please send in your best ones and we can add them to the album.



This post will be updated as more material becomes available. To begin with, here is coverage from the CTV National News as shown Sunday 20 September 2009. The version on the CTV website can be found here (but it doesn't include the intro by Sandie Rinaldo you will see below). And here is the accompanying written report on CTV.ca.



Here is a link to send feedback to CTV -- please let them know you appreciate this coverage.

"They are ticked off, and they want answers..." That is the opening line of an A-Channel News report about the Wall of Hope event in Victoria, BC. Here is an email to contact the BC Ministry of Health Services and let them know what you think about the outdated and misguided information given by Minister Kevin Falcon in this interview. The protocol Minister Falcon refers to is, of course, the IDSA guidelines whose validity were seriously called into question subsequent to the antitrust investigation against the IDSA concluded by the Connecticut Attorney General in 2008. And yet our health agencies continue to cling to these narrow guidelines, completely ignoring other opinions such as those from the International Lyme and Associated Diseases Society (ILADS).



On the day of the Wall of Hope event at Queen's Park, a petition was submitted to the Ontario Legislature regarding Lyme and Chronic Lyme disease issues in Ontario. The petition addresses issues of failing to acknowledge Lyme as endemic in Canada, inadequate testing and inadequate physician training. It was signed by more than 1,400 concerned persons from across the province. The Government of Ontario is officially required to respond to this petition within 24 sitting days of the House. The video below, courtesy of the Legislature's Broadcast and Recording Service, is of the petition presentation in the Legislature.

Wall of Hope 2009 - Toronto

*************UPDATES******************
Those attending the demonstration may have their choice of a t-shirt or canvas carry-bag (while supplies last), compliments of Lyme Action Group.

We are very pleased to announce that Dr. Jozef Krop (LLMD) and Ms. Helke Ferrie (medical/science author) will be speaking at the event. We will also be making a formal presentation of our petition to an MPP, which will subsequently be read in the Legislature.

Washrooms are available -- ask someone from Lyme Action to escort you to the building.

If you don't need to rush off, please pack a lunch and join us for a picnic on the north lawn (picnic tables available) after 11:30am. And if you still don't need to rush off after lunch, you might want to pay a visit to the Legislature where our petition is scheduled to be read at approximately 1:30 pm!

Remember umbrellas just in case... but let's keep praying for sunshine. ;-) The forecast is looking mighty fine.

Please spread the word -- let's make a strong statement with the number in attendance. See you on the 17th!
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To all who are concerned about Lyme Disease:

Lyme Action Group is pleased to sponsor this year's Wall of Hope 2009 in Toronto. Mark your calendars: Thursday September the 17th. The Wall of Hope is happening once again this year right across Canada. Our Toronto event will begin at 10:00 am on the south lawn of the Ontario Legislature at Queen's Park. This will officially go until 11:30 am.

The purpose of the event is to attract attention to the issues of Lyme disease, and to make medical associations and governments on all levels think about what they are not doing to help us! We need their help. Please come and join us! Bring friends and family who know what daily struggles we go through. Contact your elected representatives (links to the right) and see if they will meet with us in front of Queen's Park. Contact any media source you can and lets make this as public an event as possible. The more people the stronger we are and the stronger the message we will be sending. 2009 has been an extraordinary year for media coverage of Lyme issues -- let's keep the momentum building!

Items needed will be lots of big and readable signage, fliers and anything else anyone can think of! Most importantly we need lots of participation. Lyme Action will have some posters available and a few other surprises for those in attendance! Remember to bring water, snacks and chairs.

If you need transportation (or can help with transportation), directions or other information, please let us know. There is a TTC stop immediately on the south side of the Legislature grounds. We will be gathering on the south lawn (see green arrow on map below). There are a number of paid parking locations in the area, including on King's College Circle on the adjacent University property (west of the Legislature). Please visit the Wall of Hope 2009 - Toronto Facebook page where you will find additional info and can indicate your attendance. See you on the 17th!


View Larger Map

For more information, please contact: Keith Poullos (GTA Lyme Support group) 519-853-0149 or Lyme Action Group. Please note that this is a scent-free event as some in attendance have severe sensitivities.

Lyme Action gratefully acknowledges the Canadian Lyme Disease Foundation for the use of the poster series linked above.

The National Post, Global Television and the IDSA

The press, the tube, and a medical society on whose reputation aspersions have been cast. What do these three have in common? Well, they were all headlining on the subject of Lyme disease this week. The National Post began a new series about Lyme disease in today's paper. Global Television featured a Lyme story in their Family Health segment on the 6 o'clock news last night. And today the IDSA made the video archive of last week's hearing in Washington DC available through its website.

Debate Over Lyme Disease Lingers On

Diagnosis, Treatment; Canadian doctors hold to existing guidelines while laws change in the U.S.

Today the National Post launched a new series about the mysterious world of Lyme disease. This first article includes interviews with CanLyme President Jim Wilson and retired BC physician Ernie Murakami.

Also quoted is Dr. Muhammad Morshed of UBC, who "regrets" that the recent Lyme doctor protection legislation in Connecticut gained the political support it did. Yes, Dr. Morshed -- that nail-bitingly close (unanimous!) political support -- how did it ever pass?... unanimously passed through each and every stage of the legislative process... making Connecticut the 3rd State to adopt such legislation, following in the footsteps of California and Rhode Island. And then there is New York State, which has implemented a non-legislative solution to the same problem of Lyme doctor harassment by medical boards. Still other States have been implementing improved education and awareness programs.

The National Post columnist of this series is Lia Grainger. Please take a moment to thank her for covering this important subject and tell her what you think. You can reach her via email. Tomorrow's column will focus on the spread of ticks into Canada.

Last night the 6 o'clock Global News featured a Family Health segment about Lyme disease. The piece included interviews with Robert Manten (Lyme patient), Janet Mitchell (Lyme patient), Dr. Jozef Krop (Lyme physician), and Dr. Nicholas Ogden (Public Health Agency of Canada). The video segment is pasted below. You can reach Global's Health Specialist, Beatrice Politi, by email with your comments.



And finally, the IDSA. As promised and right on schedule, the video archive was made freely available for viewing through the IDSA archive website. There is a lot of material to digest here, including widely divergent opinions on both sides of the issues.

Below is additional comprehensive video coverage of last week's hearing, by ABC 7 News in their On Your Side segment.

IDSA Hearing on Lyme - Washington, DC

Last Thursday, July 30th, 2009, was a historic day. A hearing took place in Washington DC to consider a broad range of medical opinions with regard to Lyme disease. This hearing came about as the result of another historic event -- the antitrust lawsuit that the Connecticut Attorney General brought against the Infectious Diseases Society of America (IDSA). The Attorney General's investigation identified potential conflicts of interest with regard to the original Lyme guideline panelists and serious flaws with the way in which those guidelines were prepared. And in a 2008 settlement, the IDSA agreed to complete a review of its Lyme disease guidelines, including seeking input from a broad range of stakeholders both in written form and through a 1-day invitation-only hearing.

By year end, the IDSA expects to make public its intent with regard to the 2006 Lyme guidelines -- whether they will stand as is, or be modified in part or in whole. The complete video record of the 1-day hearing, which was broadcast live online during the event, is expected to be available through the IDSA website this week. In the meantime, the IDSA is making all of the presentation materials available for download. The presenters included:

1. Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ PDF
   
2. Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA PDF
   
3. Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California PDF
   
4. Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD PDF
   
5. Ben Luft, MD, The State University of New York, Stony Brook, NY PDF
   
6. Allison Delong, MS, ILADS & The Center for Statistical Sciences, Brown University, Providence, RI PDF
   
7. Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
   1. Slides PDF
   2. Statement PDF
      
8. David Volkman, MD, Nissequogue, NY
   1. Slides PDF
   2. Statement PDF
      
9. Sam Donta, MD, Falmouth, MA PDF
   
10. Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT PDF
    
11. Brian Fallon, MD, Columbia University Medical Center, New York, NY
    1. Slides PDF
    2. Statement PDF
       
12. Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
    1. Slides PDF
    2. Statement PDF
       
13. Ken Liegner, MD, ILADS, Armonk, NY PDF
    
14. Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA PDF
    
15. Steven Phillips, MD, ILADS, Wilton, CT PDF
    
16. Arthur Weinstein, MD, Washington Hospital Center, Washington, DC PDF
    
17. Raphael Stricker, MD, ILADS, San Francisco, CA PDF
    
18. Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NYPDF

This hearing has added to the year's already heightened media focus on Lyme disease as an "emerging epidemic", as it has been referred to by the CDC. Below is an example of recent coverage by ABC News. This particular coverage is noteworthy in that the medical correspondent (Dr. Marie Savard) was herself a Lyme patient not long ago.



Here is a press release issued by the International Lyme and Associated Diseases Society (ILADS) regarding the IDSA hearing, titled HISTORIC HEARINGS ON MOST CONTROVERSIAL DISEASE IN U.S., LYME DISEASE: SPOTLIGHT ON A HIDDEN EPIDEMIC.

In a Greenwich Time article published late last Thursday, Connecticut Attorney General Richard Blumenthal said he felt the hearing in Washington, D.C., on Lyme disease treatment guidelines that he helped bring about, was "unprecedented" and set a standard for transparency and fairness in crafting medical recommendations.

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...

Cor Blimey, Guv'nor!

CT Governor signs Lyme doctor protection Bill into law.

On Sunday amidst little fanfare, Connecticut Governor M. Jodi Rell signed Bill HB6200 into law. Earlier this year the Bill received unanimous support from the Health Committee, which introduced it to the House. This was followed, with but minor revisions along the way, by the unanimous support of both Houses of the Connecticut General Assembly. It will now come into effect next month on July 1, 2009.

In what we hope will be a strong message to the Infectious Diseases Society of America (IDSA), which continues in its heavy-handed attempt to shut down the conversation surrounding Chronic Lyme, this Bill clearly comes down on side of patients, their freedom to choose treatment, and doctors' freedom to exercise their clinical judgement.

To illustrate the IDSA's persistent attitude on this subject, check out this recent exchange printed in the British Journal of Medical Ethics (JME). A few months ago, a piece appeared titled "Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process", in which Johnson and Stricker outlined the reasons why the IDSA now finds itself in the position of having to review its 2006 Lyme disease guidelines with a completely new panel. In May 2009, IDSA President Anne Gershon submitted a reply to the JME in which she continues the Society's spin (you know the drill, but to paraphrase: Chronic Lyme doesn't exist, long-term antibiotic treatment is ineffective and dangerous). It is quite astonishing that she would put such statements in writing given that the guidelines review process is still in progress! Or are we to surmise from her comments that the outcome of that review has already been determined...? Well, the responses to President Gershon posted by the JME were not pretty (quite good reading, but not pretty).

This is the very stuff that got IDSA into trouble in the first place. The 2008 post-investigation press release from the Connecticut Attorney General's office states it clearly: The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus". Let's hope this is not déjà vu all over again. Time will tell.

Mark this date on your calendar: July 30, 2009. That's the date of the IDSA's "open" public hearing in Washington, DC (you know... the open public hearing that the public cannot actually attend). The IDSA has promised to broadcast that hearing live via their website.

While some have attempted to misrepresent Connecticut's new Bill as an ill-advised attempt to "legislate medicine", it is quite the contrary -- it does not tell doctors what they have to do (unlike the IDSA guidelines), but rather protects their freedom to use their judgement without undue interference from regulatory bodies. Governor Rell had this to say about the Bill: “Doctors in Connecticut – the absolute epicenter of Lyme disease – can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected. The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”

Here is the press release from the Lyme Disease Association, and brief coverage from HersamAcorn.com.

Please let your elected representatives know about this exciting development in Connecticut, which now follows similar legislation in California and Rhode Island, in addition to the non-legislative approach implemented by New York. Canada's Lyme doctors continue to be harassed by our medical colleges. Many doctors will not treat Lyme patients for fear their licence could be in jeopardy. This needs to stop.

Three cheers for Guv'nor Rell!

Tracking Lyme disease in Canada

CTV News: Avis Favaro covers the rise of this infectious disease.

"Lyme disease is moving its way into new parts of Canada but the government is not doing enough to track it or to teach doctors how to diagnose it, says a new report."

"The painful and debilitating affliction known as Lyme disease is spreading in Canada and with the summer outdoor season about to get into full swing, doctors are being asked to report even suspected cases to help health officials track it."

For the compete article visit CTV.ca online. A video report, which aired Monday June 8, 2009 on CTV National News can be viewed here.

A related piece by the CBC is titled Lyme disease spreading in Canada, researchers find. Here are links to a CBC video report in Real Media and QuickTime formats.

A report this week in the Canadian Medical Association Journal titled The emergence of Lyme disease in Canada outlines the increase in Lyme endemic areas across our country. While there is really nothing new here from the perspective of the Lyme community (there have been Lyme patients suffering in every province of the country for years), it is nice to see some acknowledgement of the problem from medical officials.

Please ask your elected officials what will be done to teach our doctors how to diagnose this debilitating disease.

Lyme Action in Elora

Elora rocks!

Lyme Action Group, together with the Lyme Disease Association of Ontario, participated in the Sustainable Futures Aware Fair in Elora today, an event to raise awareness about environmental issues and human rights, and the link between them.

Sharing our booth with Habitat for Humanity and right next door to the enticing aroma of Planet Bean's fair trade coffee, we were in good company. It was a great day and fortunately the rain held off!

Thank you to everyone who visited our booth, and signed our Ontario Legislature Chronic Lyme disease petition. Your support is much appreciated.

Compliments to the students of Centre Wellington District High School for your great work in organizing this event!

Lyme is the law in CT

It's official folks -- after unanimous approval from the Health Committee, followed by unanimous approval from the House of Representatives just a month ago, yesterday the Connecticut State Senate gave unanimous approval to a Lyme bill that offers protection to that state's doctors who diagnose and treat Chronic Lyme patients. The 36 to 0 decision makes Connecticut the third state to adopt Lyme doctor protection legislation, following in the footsteps of California and Rhode Island (in addition to New York, which implemented a non-legislative solution).

An excerpt from the Lyme Disease Association press release follows:

HB 6200 contains language that will protect CT licensed Lyme treating physicians from prosecution by the State of Connecticut Medical Examining Board solely on the basis of a clinical diagnosis and /or for treatment of long-term Lyme disease. The bill provides the definition for Lyme disease which includes “the presence in a patient of signs and symptoms compatible with acute infection with Borrelia burgdorferi; or with late stage or persistent or chronic infection with Borrelia burgdorferi, or with complications related to such an infection.” It also defines clinical diagnosis as determined by a physician “…that is based on knowledge obtained through the medical history and physical examination alone, or in conjunction with the testing that provides supportive data for such clinical diagnosis.” In addition, it provides for updating the Lyme disease definition if other strains are found to cause Lyme disease.

The full press release is linked here. The complete text of the Act Concerning the Use of Long-Term Antibiotics for the Treatment of Lyme Disease, which will come into effect on July 1st, 2009, is linked here.

Another victory for the Lyme community. But let's keep the momentum building. CanLyme's president Jim Wilson has issued the following challenge:

I want to attach another copy of our 2008 letter to the Chief Public Medical Officer for Canada, Dr. David Butler-Jones. He seems to have been able to simply ignore this letter. Please let your MPs know that we demand action. Send them another copy of the letter. Do not let them off the hook here. With the passing of the law in Connecticut we demand to know on what basis our own health care system is refusing input from patients and protection for doctors. Don't be afraid to ask your MP for a response in writing as to what steps they intend to take to enforce the rights of Canadian patients, Canadian doctors and the Canadian Lyme Disease Foundation's medical experts to establish Lyme guidelines for Canada.

Please write your representatives today. MP and MPP contact info can be accessed conveniently through the Lyme Links to the right of this article. Together we are making a difference!

Magnotta and CanLyme take to the airwaves

Controversial radio ads launched this month across Canada.

Lyme disease is the fastest growing infectious disease in the world but the Canadian government won’t acknowledge this fact because it lacks proper understanding of the disease, continues to provide Canadians with poor testing methods and operates on the belief that the disease is rare in this country. That’s the root problem in fighting Lyme disease in Canada according to Magnotta Winery Corporation and the Canadian Lyme Disease Foundation (CanLyme) who have teamed up to challenge the government’s stance on this complex illness with a series of radio ads launching this month, the first of their kind in Canada.

So say Magnotta and CanLyme, and we would have to agree. The complete press release is linked here. If you haven't yet heard these ads on your local radio station, you can listen to the informative radio spots through these links:

Lyme Radio Ad #1
Lyme Radio Ad #2
Lyme Radio Ad #3

If you are not already aware, Magnotta has for a few years been bottling a delicious red wine (no bias here...) as a fund raiser for CanLyme's goal of establishing a Canadian Lyme disease research facility and clinic. A portion of the proceeds from the sale of this wine go to CanLyme for this purpose. Check out the Magnotta link in our Lyme Links in the right-hand column for more info.

Also, it is not long until the 4th Annual True North Golf Tournament (to be held at the Thornhill Golf and Country Club on June 1st 2009), another Magnotta event in support of CanLyme. To learn about this and other southern Ontario events planned for Lyme disease awareness month, visit Magnotta today.

Another brick in the wall: AAPS on the IDSA Lyme Guidelines

The American Association of Physicians and Surgeons (AAPS) takes a stand against the IDSA Lyme Guidelines.

A much more clever blogger would come up with some insightful alternative lyrics for you. That will have to wait for a day when the brain fog is a bit clearer -- or for a clever reader! For today, the classic lyrics will have to do.

"We don't need no thought control..."

Let doctors do their job for goodness sake! This would seem to be the general theme of AAPS comments on the IDSA Lyme Guidelines posted on their website last week. The Association of American Physicians and Surgeons, with thousands of members across the USA representing a broad spectrum of medical disciplines, seeks to promote the practice of good and ethical medicine.

The AAPS objects to the "overly rigid" stance promoted by the IDSA Lyme Guidelines. Doctors require some flexibility to be able to effectively do their jobs. The IDSA's excessive requirements for diagnostic test confirmation and restriction of doctor clinical judgement simply go too far. This statement by the AAPS sums it up beautifully: "Medical societies do not practice medicine; physicians do."

"No dark sarcasm in the classroom..."

A recent New York Times article (Harvard Medical School in Ethics Quandary), about inappropriate big pharma influence on America's medical schools, highlights a related problem. Are medical students being taught truly good medicine or what big pharma calls good medicine ($$$)? A movement, which began 4 years ago with a concerned first year medical student, now includes more than 200 students and faculty who are "intent on exposing and curtailing the industry influence in their classrooms and laboratories." According to the American Medical Student Association, the prestigious Harvard currently scores an "F" in this category.

Such conflict of interest is the sort of thing that got the IDSA into trouble in the first place. As explained by science writer Kris Newby in the Lyme documentary Under Our Skin, several of the original IDSA Lyme Guidelines panelists had undeclared conflicts of interest relating to big pharma and the medical insurance industries. The same conclusion was reached when the Connecticut Attorney General wrapped up the historic anti-trust investigation of the IDSA last year. This on top of the IDSA's blatant refusal to give meaningful consideration to the abundant information supporting the existence of Chronic Lyme disease.

"I have seen the writing on the wall..."

With the public input period to the new IDSA Lyme Guidelines panel now closed, we wait with great anticipation for the "open" public hearings that have been rescheduled for July 30th in Washington DC.

Could it be that the perfect storm of medical experience, science, and political fortitude is finally reaching a long awaited convergence? Oh, let's hope so.

Brooke Landau's story from San Diego 6

This is such a great and encouraging story. You may have heard her interviewed on other occasions -- including an appearance in the award-winning Lyme documentary Under Our Skin. Thanks to CanLyme for bringing this to the attention of the Lyme community.

Californians, like many of us in Canada, are frequently told "you couldn't possibly have Lyme -- we don't have it around here" or "your labs are fine, it's all in your head". Granted, California is not the American ground zero for Lyme disease, but the reality is that the disease has been found in every state of the USA and numbers of new cases continue to rise annually (just as it has been found in every province of Canada).

Well Brooke Landau, a weathercaster for San Diego's Channel 6 News, found herself in that situation some 14 years ago. It wasn't until a year after an encounter with a tick that her Lyme symptoms kicked into gear. Inaccurate Lyme tests further delayed her diagnosis for several years. Interestingly, part of her recovery included use of hyperbaric oxygen therapy as part of a research study being conducted by her doctor. Brooke's story includes many now familiar themes, including her doctor having to fight in order to keep treating Chronic Lyme disease. After years of treatment, she is now Lyme-free! Those are magic words for many of us in the Lyme community.

You can watch Brooke's inspiring story in the clip below. This originally aired on Sunday, February 1, 2009. This link goes to a more detailed written account of the story on San Diego 6's website.

CT Lyme bill passes with unanimous approval!

The Connecticut Lyme bill received unanimous approval in that State's House of Representatives today. The bill is designed to protect doctors who treat Lyme disease and, in particular, Chronic Lyme disease. Introduced by State Representatives Kimberly Fawcett and Jason Bartlett, the bill also received unanimous support from the State's Joint Committee on Public Health in an earlier vote.

The bill has the support of the Connecticut State Medical Society, although not from its Department of Public Health.

Today's vote in the House of Representatives brings the bill one important step closer to becoming law. It is a shame that medical systems should become so broken that legislative solutions would seem to be the most efficient way of addressing such issues -- perhaps this is what is needed in Canada. Connecticut may soon join the ranks of New York and Rhode Island, which already have Lyme doctor protection laws in place. The bill now moves on to the Senate.

"I had no idea what last July was going to present to me when my husband was diagnosed with a life threatening case of Lyme disease," said Rep. Fawcett.

State Representative Jason Bartlett has made this his cause because his mother has Chronic Lyme disease.

For the full story, see this article on News Channel 8, wtnh.com. Below is a video report from News Channel 8 as well.



Here is another well-written piece from The Connecticut Post. "[The bill] comes down on the side of people who suffer from Lyme in this big debate," said state Rep. William Tong, D-Stamford, a bill co-sponsor. "It says the scientific community can have that debate, but we're not going to let anybody else go without treatment."

Debate: Now there is a concept to contemplate; not medical Colleges shutting down doctors who are trying to help those suffering from Chronic Lyme disease; not the IDSA summarily ignoring the more than 19,000 articles in medical literature that demonstrate the persistence of Chronic Lyme infections; not Health Canada revising Canada's Lyme disease guidelines without the highly qualified leadership of the Canadian Lyme Disease Foundation; not Health Canada sticking by Lyme tests and a National Case Definition that have been shown to be seriously flawed. Medical progress should not be defined by what big pharmaceutical dollars call progress. The medical community needs to get to a place where it can have a meaningful conversation about emerging medicine and competing ideas.

Lyme Research in Canada!

The first-of-its-kind independent Lyme research facility opened its doors amidst great anticipation at the Columbia University Medical Center in northern Manhattan, NY, back in early 2007. Columbia's Lyme and Tick-Borne Diseases Research Center was established as "the first academic research center in the [United States] to focus multidisciplinary research on Chronic Lyme disease", under the direction of the highly respected Brian Fallon, MD, MPH. The Center's website includes information on their latest research and extensive patient resources.

Yesterday the official opening of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society was announced on CanLyme. Hat's off to Dr. Murakami. Considered by many to be Canada's foremost Lyme doctor (he has taken more than 20 Chronic Lyme patients out of "permanent" wheelchairs!), he is no stranger to the Lyme controversy -- see Dr. Ernie Murakami, MD on CBC Television.

The full announcement about the new research centre follows:

It is with great excitement that we announce the official opening of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society. It is Dr. Murakami's life work to make a difference for those suffering with Lyme. Up until now, Dr. Murakami has been fighting this fight as a lone doctor. Now he has a Society to fall back on, representative of all he believes in. He is the founder and president of this society. This will now be his lasting legacy.

The Society is registered with the Government of Canada as a Not-for-profit Society. It is currently run by a board of nine directors. There is a good line up of experiences within the board members to assist in achieving the goals of the Society. As the Society is a not-for-profit organization, it relies heavily on donations, grants and outside funding. The society website has been set up to accept donations from anyone interested. Memberships are also available, for those who are able, which will allow them to be part of the Society and assist with fundraising activities and efforts.

Up until now, Dr. Murakami has been funding his efforts on his own. As all of you know, he does all of his communications with sufferers au gratis. We hope you will join the official Society of Dr. M in some way, shape or form that suits you best. The first priorities of the Society is to advance the research efforts as quickly as possible. There is a plethora of information and data that has been gathered from patients just like you. This information and the work of cooperative laboratories will fuel the truth forward.

We are looking forward to a positive future and some exponential changes for those with Lyme and co-infections. Please visit the Society website and bookmark it. We hope you will be able to help out anyway you can. http://www.murakamicentreforlyme.org

Any questions or problems with the site, please contact me directly at info@murakamicentreforlyme.org

Sincerely yours,
Melanie Lauren
Forum Admin
Marketing, Media and Fundraising Director
Dr. E. Murakami Centre for Lyme

Update on CT Lyme bill

Here is an update on the Connecticut Lyme Bill we told you about in February (see The poli-ticks of Lyme), where State Representatives Kim Fawcett and Jason Bartlett introduced a bill to protect Connecticut Lyme physicians.

Fawcett, whose husband battled to get treatment for Lyme disease last year, had this to say: "[A perception] that a lot of doctors out there maybe just think, Lyme Disease, I don't want to get involved in it. So what they do is deflect to their patients, 'I can't really treat you here, you have to find a specialist.' Our legislation doesn't say what they do. It just gives them the freedom to diagnose clinically and treat how they see fit."

This clip is from News Channel 8, as posted on WTNH.com.

Lyme film at Toronto Total Health Show... and much, much more!

A screening of the award-winning Lyme documentary Under Our Skin will take place at North America's premier natural health show in Toronto this April.

Date: Sunday, April 19, 2009
Time: 4:00 - 6:00 pm
Location: Room 203, Metro Toronto Convention Centre, North Building. Admission to the film is free for those attending Total Health 09 (as a minimum, a Total Heath Sunday "Lecture Pass" is required to attend the film).

This highly acclaimed US documentary reveals the untold story of the massive spread of Lyme disease throughout North America - "an emerging epidemic larger than AIDS". It has been discovered, that up to 50% of patients with multiple sclerosis and other neurodegenerative disorders including autism, Parkinson's, ALS, as well as chronic fatigue and fibromyalgia may actually have Chronic Lyme disease from a tick bite. It's detectable, treatable and reversible, even in its chronic form, yet thousands are suffering from misdiagnosis.

Also at the show, Jozef Krop, MD, will make two Lyme disease presentations. Dr. Krop, known internationally for his pioneering work in Multiple Chemical Sensitivity, is trained to treat Chronic Lyme disease by the International Lyme and Associated Diseases Society and has many years experience with Ontario's victims of Chronic Lyme. You can visit Dr. Krop at Booth 904 (with KOS Publishing). His presentation details are below:

Lyme Disease: It's Treatment and Politics
Saturday, April 18, 4:00 - 5:00 pm, Room 203
Sunday, April 19, 3:00 - 4:00 pm, Room 203 (immediately before the film)

Dr. Krop will speak about internationally validated diagnosis and treatment protocols and what we all must do to persuade provincial and federal governments to take this growing epidemic seriously. Lyme contamination of the blood and organ donor supply is a potential public health disaster. In Canada, there is no effective screening or treatment for Chronic Lyme disease. The Ontario College of Physicians and Surgeons does not recognize international diagnostic and treatment protocols and intimidates physicians willing and trained to treat Chronic Lyme disease.

And last but not least, from the author who brought us "What Part of No! Don't They Understand? Rescuing Food and Medicine from Government Abuse", medical science author Helke Ferrie of KOS Publishing will launch her new book at this year's Total Health Show: "Chronic Lyme Disease in Canada - The Persecution of Doctors Able to Treat It and the Denial of Treatment Choice to Patients". Don't miss the launch of this much-anticipated book that's sure to become an important Lyme reference. Revised and updated in September 2008, Ms. Ferrie's previous book can now be downloaded free of charge from the KOS website.

You will be able to meet Ms. Ferrie and members of Lyme Action Group at Booth 904 in the Exhibit Hall.