Monday, December 22, 2008

BC's College of Physicians & Surgeons gets a talking to

A Christmas present just in time for the holidays -- last week, a member of the BC legislature (Mr. David Cubberley) sent a strongly worded reprimand to that province's College of Physicians & Surgeons (CPSBC). The letter was spurred by the glib attitude toward Lyme disease reflected in a quarterly bulletin distributed by the College back in October.

In his letter, Mr. Cubberley writes "[the bulletin] reinforces the prevailing lack of awareness among BC doctors. The [diagnostic] approach recommended actually contradicts the policy of the BC Ministry of Health and the BC Centre for Disease Control...". He goes on to note the College's failure to even mention the primary Lyme symptoms of which doctors should be aware, and that the College "compounds the harm to Lyme sufferers by perpetuating the claim that Chronic Lyme disease 'remains controversial', meaning that it may not exist. This equates to a life-sentence for anyone undiagnosed in the early stages (which is virtually everyone contracting Lyme in BC today)..." Well said.

You can read both Mr. Cubberley's letter and the CPSBC newsletter from the embedded links (pdf format). Those in the Lyme community may find themselves uncontrollably cheering as they read this well-written letter to the College. Gradually there are more of our elected representatives in our corner. Keep working on yours.

Virtute et Veritate (from the CPSBC logo)... Maybe the College will find some of this in their stocking this Christmas. This is the season of hope after all.

Merry Christmas

Friday, December 5, 2008

Getting the attention of our elected representatives

A few other noteworthy items have transpired over the last month.

Those of you in the Lyme community may recall that early this year, an MP from Manitoba (the Honourable James Bezan) invited Lyme patients from across the country to contact him with their Lyme adventures -- he wanted to hear from us about our experiences with Canada's medical system. Well, it seems he had a pretty good response. According to a recent article in Nova Scotia's Chronicle Herald, aptly titled It should have been done 10 years ago, Mr. Bezan has forwarded our accounts to new federal Minister of Health Leona Aglukkaq, as well as every one of her provincial counterparts.

"There seems to be a lack of education of our doctors, poor diagnostics and testing, and that has resulted in the virus [sic] having a greater negative impact on the lives of too many Canadians," Selkirk-Interlake MP James Bezan said in an interview. Bacteriological inaccuracies aside, Mr. Bezan hit the nail square on the head.

Elsewhere in Canada, the leader of Alberta's Liberal Caucus, MPP Kevin Taft Ph.D. (aka “the man with a plan”), tabled a private members statement entitled Diagnosing Lyme Disease (pdf format).

"Clearly, there are obvious deficits in the available background information, diagnostic criteria and testing recommendations for Lyme disease in Alberta." "I urge this government to work with CanLyme on a formal public review and work with federal agencies to revise Lyme testing."

Have you written your elected representatives yet? Contact your MP and MPP today ( BC, AB, SK, MB, ON, QC, NB, NS, PE, NL ).

Monday, December 1, 2008

Press Conference at Queen's Park

On 7 November 2008, Lyme Action Group held a press conference at the Ontario Legislature. The purpose was to draw Chronic Lyme disease issues, and the plight of doctors who treat it, to the attention of our elected representatives and to the public. Participating in the event were medical science author Ms. Helke Ferrie, three of Dr. Krop's Lyme patients (Ms. Janet Mitchell, Dr. Graham Kucan, and Ms. Karin Klouman), and Dr. Jozef Krop.

Part 1: Introduction by Helke Ferrie


Part 2: Patient Janet Mitchell


Part 3: Patient Dr. Graham Kucan


Part 4: Patient Karin Klouman


Part 5: Dr. Jozef Krop


Lyme Action Group wishes to sincerely thank Ontario MPP Monte Kwinter, who kindly sponsored this event.

Wednesday, November 19, 2008

Dr. Ernie Murakami, MD on CBC Television

Here is the CBC story about Dr. Murakami's inappropriate treatment by the BC College of Physicians and Surgeons. He was basically given an ultimatum earlier this year: retire or lose your licence! Why? Because he actively and openly treated Chronic Lyme disease. This is the same appalling treatment that Dr. Krop is now receiving from the Ontario College of Physicians and Surgeons.



If the YouTube video is not working, click here to see this clip on the CBC website.

Here is a link to the printed story that CBC ran a day earlier online.

Friday, November 14, 2008

Petition to the Ontario Legislature

A petition has been prepared according to the rules required for presentation to the Ontario Legislature, the text of which appears below. If you would like a pdf copy, please request by email. We are looking for signatures of Ontarians, and the petition needs to be signed in person. Completed petitions can be mailed to our mailing address at the bottom of the form. Please help us spread the word -- ask permission to place copies in places of business, doctors offices and your local veterinarian.
.............................................................

PETITION TO THE LEGISLATIVE ASSEMBLY OF ONTARIO

WHEREAS the tick-borne illness known as Chronic Lyme Disease, which mimics many catastrophic illnesses, such as Multiple Sclerosis, Crohn’s, Alzheimer’s, arthritic diseases, depression, Chronic Fatigue and Fibromyalgia is increasingly endemic in Canada, but the scientifically validated diagnostic tests and treatment choices are currently not available in Ontario, forcing patients to seek these in the USA and Europe and

WHEREAS the Canadian Medical Association informed the public, governments, and the medical profession in the May 30, 2000, edition of their professional Journal (CMAJ) that Lyme Disease is endemic throughout Canada, particularly in Southern Ontario; and

WHEREAS the Ontario Public Health system and the Ontario Health Insurance Plan currently do not fund those specific tests that accurately serve the process of establishing a clinical diagnosis, but only recognize testing procedures known in the medical literature to provide false negatives at 45 to 95%; and

WHEREAS physicians practising in Ontario do not receive current and updated information on the incidence of Lyme Disease, being unaware that annually some 25,000 new cases are reported in North America, nor do physicians receive training in the diagnosis and treatment of Acute or Chronic Lyme Disease and, therefore, remain unfamiliar with the highly effective protocols developed by the International Lyme and Associated Diseases Society (ILADS); and

WHEREAS the Regulated Health Professions Act of Ontario states: “It is the duty of the Minister [of Health] to ensure that the health professions are regulated and coordinated in the public interest”

WE, THE UNDERSIGNED petition the Legislative Assembly of Ontario to request the Minister of Health to direct that the Ontario Public Health system and OHIP include all currently available and scientifically verified TESTS for Acute and Chronic Lyme diagnosis, to do everything necessary to create PUBLIC AWARENESS of Lyme Disease in Ontario, and to have internationally developed diagnostic and successful TREATMENT PROTOCOLS available to patients and physicians.

Saturday, November 8, 2008

Online Petitions

Thank you to Dr. Ernie Murakami, MD for sponsoring the following two online petitions relating to Lyme disease in Canada. Please sign on and let others know!

Stop the Persecution of Lyme Literate Doctors! (this petition is now closed)

New Research & Testing for Lyme Diagnosis! (this petition is now closed)

Just a note to bring to your attention. When you are signing these petitions, the Step 2 confirmation page gives you the choice to opt out of further correspondence from the petition host site. Remember to uncheck these boxes (which are checked by default) if you do not wish to receive such correspondence.

Sunday, November 2, 2008

Toronto screening of "Under our Skin"

A screening of this documentary film will take place at the Toronto Whole Life Expo 2008, Canada's largest showcase of natural health and green living.

Date: Friday November 14, 2008
Time: 4:30 pm - 6:30 pm
Location: Lecture Hall 205, Metro Toronto Convention Centre

This shocking U.S. 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 simply have Chronic Lyme disease from a tick bite. It's detectable, treatable and reversible, yet thousands are suffering from misdiagnosis. In Canada there is no effective screening or treatment for Chronic Lyme. Ironically, the Ontario College of Physicians and Surgeons is now investigating the last Canadian medical doctor who is willing to treat it openly. For one of the most powerful human rights stories of our decade do not miss this screening.

Helke Ferrie will be introducing the film and will also briefly discuss the new nationwide Charter for Health Freedom. She will soon be publishing her new book "Chronic Lyme Disease in Canada - The Persecution of Doctors Able to Treat It and the Denial of Treatment Choice to Patients". Discussion afterwards with Dr. Jozef Krop and the Lyme Action Group.

Free admission with any Whole Life Expo pass.

Questions and comments can be directed all weekend to the Lyme Action Group located at KOS PUBLISHING booth 166.

For more information about this film, including trailers, visit Open Eye Pictures online.

Saturday, November 1, 2008

What YOU can do:

• Write to your provincial MPP (1-800-267-8097) and federal MP demanding Canada use the International ILADS guidelines for Lyme.
• Write to the Ontario Minister of Health (David Caplan) and the Federal Minister of Health (Leona Aglukkaq).
• Contact Winnipeg North MP Judy Wasylycia-Leis who is calling for a national strategy for Lyme.
• If you have Lyme and have had difficulty being diagnosed and treated, contact local press with your story.

Please consider donating to the Lyme Action Group to support a public and political awareness campaign. Mail your cheque to P.O. Box 1095, Mount Albert, ON L0G 1M0 or donate at any TD Canada Trust Branch, to: TD Branch 3056, Account #5204294 or make a secure online donation by clicking on the Donate link to the right.

MEDICAL POLITICS: The Shame

• Divided medical opinion on diagnosis and treatment: Infectious Disease Society of America (IDSA) vs. International Lyme and Associated Diseases Society (ILADS)
• IDSA Lyme disease guidelines ignore chronic Lyme, dissenting international research and published positive patient outcome from long-term antibiotic treatment. Insurance companies have denied coverage for long-term treatment relying on these guidelines as justification.
• The Attorney General of Connecticut found in May 2008 that the "the IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion,” and the IDSA enabled “the chairman who held a bias regarding the existence of chronic Lyme to handpick a like-minded panel.”
• OHIP test for Lyme is grossly false-negative and deficient in diagnosis of chronic Lyme and associated tick-borne infections compared to the combination of lab tests used in US and Europe.
• Positive patient outcome remains irrelevant to medical policy in Canada.
• Doctors are not trained to diagnose and treat and are afraid to become involved with chronic Lyme.
• Patients are caught in the middle – with physical, emotional and financial suffering, and are deprived of treatment which can stop or reverse progression of their disease.

LYME DISEASE: The Facts

• Identified in 1975 and transmitted by the bite of ticks infected with a spirochete bacterium called Borrelia burgdoferi.
• Chronic Lyme develops when early diagnosis is missed or inadequately treated.
• Manifests as symptoms of virtually all known neurological, musculoskeletal, arthritic, gastrointestinal, cardiac, psychiatric and autoimmune disorders including MS, ALS, Alzheimer’s, Parkinson’s, chronic fatigue, fibromyalgia, autism, etc.
• Is endemic in Europe, North America and Asia.
• Has increased by 101% between 1992 and 2006 in USA.
• Estimates of 200,000 new cases annually in North America; 85,000 per year in Europe.
• Lyme incidence is greater than AIDS and West Nile Virus combined.
• Lyme is transmissible through the placenta and breast milk of infected mothers.

Denying Lyme is a Crime!

This and today's subsequent posts are excerpts from our "Lyme Fact Sheet". If you would like a pdf copy, please contact us by email at LymeActionGroup@gmail.com.

Thousands of patients abandoned or forced to seek treatment outsi
de Canada - Entire population at risk:

Up to 50% of the recent rise in Multiple Sclerosis may be caused by Borrelia burgdoferi, a bacterium that causes Lyme Disease. Usually transmitted by a tick bite, if not diagnosed and treated immediately, Lyme can become chronic. Known as “The Great Imitator,” it can manifest as Autism, Lou Gehrig’s Disease (ALS), Fibromyalgia, MS, Alzheimer’s, Parkinson’s, Chronic Fatigue, Crohn’s, Scleroderma and others, now all on the rise and often reversible. The tragedy in Canada is that this bacterium is actually identifiable and treatable. Imagine if we could cure half of the above cases and end needless suffering!

But doctors are not allowed to appropriately screen or treat patients for Chronic Lyme Disease. A 2004 directive by the College of Physicians and Surgeons of Ontario (CPSO) against the late Dr. Philip Williams MD of Ajax, who treated chronic Lyme disease, ordered that he: “will not diagnose... (among other chronic infections) Lyme disease” nor “treat patients with long-term antimicrobials . . .two weeks or more”.

Similarly, Dr. Ernie Murakami MD, of Vancouver, was forced by the BC regulatory College to stop treating Chronic Lyme Disease and quit his practice in February, 2008. Now Dr. Jozef Krop MD, of Mississauga, is under investigation by the CPSO for diagnosing and treating Chronic Lyme Disease, following a physician’s complaint. No patient has complained against Dr. Krop. Dr. Krop has reversed progression of symptoms of Multiple Sclerosis and Scleroderma in his practice by detecting and treating such patients for the Borrelia burgdorferi bacterium and associated infectious diseases. He is the last doctor in Ontario openly treating chronic Lyme, but may now be forced to stop treating Lyme patients.

The guidelines of the Infectious Disease Society of America (IDSA) for diagnosis and treatment of Lyme disease have been misused to restrict doctors from treating Chronic Lyme Disease, and their patients from obtaining insurance coverage for long-term treatment. In May 2008, the IDSA was forced to agree to an independent re-evaluation of their guidelines as part of an out-of-court settlement agreement in a landmark antitrust investigation by the Attorney General of Connecticut, which found significant undisclosed financial conflicts of interest on the original panel, suppression of scientific evidence, and exclusion of panel members with opposing viewpoints. However, Canada’s medical system continues to insist on following the old IDSA guidelines. Why?

The Centers for Disease Control (CDC) warns that Lyme cases have doubled over the last few years, and has red-flagged it as an emerging epidemic.

“Over a period of months or years, untreated infection can lead to mono- or oligoarticular arthritis, peripheral neuropathy, or encephalopathy.” CDC newsletter Oct. 3, 2008

OHIP-funded testing for Lyme misses almost 95% of chronic cases which would be detectable by state-of-the-art American lab methods not available here. The suffering must end now!!

Anyone can be bitten by an infected tick!

Please support the Lyme Action Group - for your Health & the Health of your Children!