May is Lyme Disease Awareness MonthHelke Ferrie May 1, 2010
How Patients, Doctors, Researchers, and Politicians are Trying to Awaken Canadian Health Authorities to the Reality of This Emerging Epidemic
Infectious diseases are very bad news – they are like an uncontained house fire. Ironically, they also are the one type of emergency that modern medicine really knows how to treat and prevent. Triumph over infectious disease is the basis of modern medicine’s fame. It is, therefore, astounding that Lyme disease is virtually ignored in Canada.
Lyme disease itself is very old; archaeological evidence of it goes back some 50,000 years. However, the currently evolved Lyme-causing bacterium is more severe and almost always appears in company with many other co-infecting bacteria.
I have spent the last two years editing a book on Lyme disease in Canada. It is available now, just in time for May – the month designated by the U.S. government as Lyme Disease Awareness Month. I would like you to become aware of what my co-authors and I have learned about this infectious disease and how this epidemic is being mismanaged by our public health authorities, our Ministers of Health, Health Canada, and those medical regulatory authorities who control doctors’ licences. This book presents the science, the politics, the treatment and testing protocols that actually are proven to work, and ways in which you can help to stop this unfolding disaster.
Lyme is one of the nastiest infectious diseases, capable of causing an enormous financial burden on any healthcare system. Over the past three decades, a medical-ethical controversy has emerged characterized by competing interests involving American private insurance companies, Big Pharma, and medical associations with prominent members willing to work for the benefit of those industries instead of their patients. This controversial mess spilled over into Canada from the U.S., where Lyme disease first broke out in 1975 in the little town of Lyme in Connecticut.
Ending Denial – The Lyme Disease Epidemic – A Canadian Public Health Disaster was written by patients, doctors, researchers, politicians, and me, to address this controversy. Each section of the book deals with one area of concern and then adds the relevant research papers whose findings are beyond doubt. We also included the most successful and science-based treatment protocols as well as an entire section on the most reliable testing – none of which are available in Canada!
The hottest issue in this book is the experience of Canadian patients, and the runaround they get from the many doctors who deny the existence of Lyme. The book goes on to reveal the ordeals of those exceptional doctors in danger of losing their licences because they do diagnose and treat Lyme patients. In fact, they treat Lyme patients in spite of Health Canada’s official denial of the existence of Lyme, and they do so with astonishing success when daring to use international protocols.
Also included in the book is a legal opinion on the way Canada literally breaks federal and provincial law with its refusal to acknowledge the existence of appropriate tests and treatment protocols. We even discuss the potentially disastrous consequences this attitude presents for our national blood supply, which is once again endangered – this time not by AIDS or Hepatitis C, but by the bacteria which causes Lyme (Canada does not use the international donor questionnaires to rule out Lyme infected donors).
Conservative MP Terence Young, one of Canada’s true guardians of public health (see my article on his latest book Death by Prescription; Vitality, May 2009), wrote the foreword to the book, in which he explains the medical corruption underlying Lyme diagnosis and treatment. And one of British Columbia’s former NDP MLAs, David Cubberley, provided a whole chapter on the Lyme controversy in that province.
These authors explore Canada’s failure to recognize, let alone deal appropriately with, what the World Health Organization and public health authorities worldwide have declared to be the fastest growing vector-borne infectious disease in the world. The U.S. Centers for Disease Control confirmed the status of Lyme as an epidemic in 2008. The U.S. Environmental Protection Agency and public health authorities provide exhaustive information on prevention and surveillance, and the U.S. Congress and Senate recently provided funds for an appropriate nationwide Lyme policy. In spite of this, Canadian authorities persist in believing that Lyme-carrying ticks that ride on deer, migratory birds, dogs and mice moving over the continent present less of a danger of Lyme when crossing the Canadian border.
Interestingly, some of the most important research into Lyme disease comes from Canadian scientists whose work is read and implemented everywhere else but here. Their publications started in the 1990’s; some important ones are to be found in our very own Canadian Medical Association Journal. A couple of the most recent ones on Lyme vectors are included in this book also.
Whatever awareness does exist in Canada about Lyme was generated by patient support groups found now in almost every province. One of the services they provide is to help Canadians find treatment – usually in the U.S. and Europe. Some, like the national CanLyme group, have been working to educate both the public and doctors for over twenty years: that’s not a typo! Canadian medical and public health authorities have been in sleepy denial for two decades and are showing no signs of waking up.
There’s irony in the fact that the resources of the entire public health system were accessed for SARS, West Nile Virus, and the ridiculous H1N1 hysteria (the H1N1 flu was declared a fraud a few weeks ago, following a formal investigation by the European Union’s parliament), but in terms of numbers, the people affected by SARS, etc, were miniscule compared to those affected by the tick-bite-caused Lyme bacterium. The U.S. Centers for Disease Control estimates that 200,000 new infected cases occur annually, most near the Canadian border on the East and West coasts.
True, SARS and West Nile virus can kill a person whose immune system is compromised, and that fact is important and requires attention and prevention, but consider that untreated Lyme disease usually becomes chronic and then triggers Alzheimer’s, Crohn’s disease, Rheumatoid Arthritis, Multiple sclerosis, Fibromyalgia and Chronic Fatigue Syndrome, heart disease, Parkinson’s, Scleroderma, or ADHD.
Furthermore, infected mothers pass it on through placental blood to their unborn babies or through breast milk later on, causing central nervous system damage consistent with autism. An infected person can pass Lyme on through sexual intercourse and saliva. The discoverer of the corkscrew-shaped bacterium that causes Lyme, Swiss researcher Willy Burgdorfer, got Lyme himself through mere skin contact with the urine of Lyme-infected laboratory mice. One Lyme disease researcher refers to this illness as the “poor cousin to the 19th century syphilis epidemic” that devastated entire populations. Among infectious diseases, Lyme is the perfect storm.
TESTING AND TREATMENT OF LYME – THE CONTROVERSY
If merely 10% of those chronic diseases which Lyme can trigger were actually diagnosed as Lyme through the availability of reliable tests and then treated, literally billions of healthcare dollars would be saved, to say nothing of preventing unimaginable human misery. Indeed, some countries like Sweden actually calculated that cost and acted accordingly – as discussed in our book.
Internationally licensed laboratories providing tests specific to Lyme disease in all its manifestations are not allowed to be used by Canadian doctors. The Canadian Public Health Laboratory Network issued guidelines in 2006 which “strongly discourage” using any of the more sophisticated and reliable tests available in the U.S. and Europe, simply asserting that they are not reliable – without a single piece of supporting evidence from the literature. Canadian guidelines only recommend an antiquated 40-year old testing procedure which is known in the medical literature to produce up to 90% false negative results. With those kinds of test results generated from coast to coast, we naturally cannot have Lyme in Canada.
Incomprehensibly, the testing situation in Canada is such that anonymous lab technicians (who have never seen the patient, and test the blood sample with a useless test they don’t know is useless) inform the examining doctor on the test report whether this patient has Lyme! After that, no further action can be taken.
Of course, the denial of Lyme is hotly denied by the Association of Medical Microbiology and Infectious Disease Canada (AMMI). Their spokesperson asserted indignantly in a November 20, 2009, press release, following the recent CTV W5 story on the plight of Lyme patients in Canada, that our doctors are well-trained in recognizing Lyme and treating it. Indeed, what they learn and then dutifully follow, is what is found in the guidelines of the Infectious Disease Society of America (IDSA) whose views on Lyme were the subject of an anti-trust investigation by the Attorney General of Connecticut, starting in 2008. The IDSA was being investigated for tampering with evidence, ignoring medical research that contradicted already entrenched views, finding guideline panel members to be in the pockets of the insurance or drug industry, and more.
The key problems with those IDSA guidelines, which Canada treats as gospel, and which got the IDSA into trouble with the law and the U.S. government, are as follows:
– their denial of the existence of chronic Lyme disease;
– refusal to recommend the use of sophisticated reliable tests now available;
– dismissal of the literature and clinical results that contradict their views;
– and insistence that alleged chronic Lyme must be an autoimmune response not treatable by antibiotics. This rigid and clinically and scientifically insupportable stance is very lucrative to the insurance industry.
However in the U.S., patients, doctors and legislators have fought back and even established a top-notch research centre dedicated to chronic Lyme disease at Columbia University. And 17 States have passed laws or regulations specifically protecting doctors who treat chronic Lyme patients.
Those IDSA guidelines were set aside by court agreement – something most Canadian infectious disease doctors don’t seem to know anything about, and Health Canada continues to follow the IDSA guidelines as if nothing happened. Those few doctors who do question IDSA logic are in for a shock. Any doctor daring to train with international Lyme disease experts will put their medical licence in danger. Prosecution by the provincial College of Physicians and Surgeons, especially in B.C. and Ontario, is the frequent outcome of exercising the right to independent medical reasoning.
Almost daily, I receive calls from Lyme patients who are desperately looking for doctors. If they have money, they stand a chance at a cure because they can get treatment outside Canada. Former BC MLA David Cubberley (now a director of CanLyme) describes this situation in chapter 6 of Ending Denial:
“The simple fact is that we have imported a problem created in the hothouse of free enterprise medicine to the south of us, which combines a policy favourable to private insurers with the settling of scores in disputes between schools of thought in medicine… Canada has … internalized the toxic byproducts of an American dispute over a disease, which in the rest of the world is generally appropriately treated … Here, patients run into a Berlin Wall of indifference and encounter a closed medical mind. In Canada, patients with chronic Lyme either live with severe pain and disability, or they sell their homes, go to the United States and buy access to antibiotics through the private health care market. What an ugly paradox: denied diagnosis and treatment under [legally compromised] U.S. guidelines in Canada’s public healthcare system, you have to go to the home of private medicine for therapy!”
Under Health Canada’s current guidelines, if you are bitten by one of the 15 species of Lyme-bearing ticks and get sick, you and your doctor are unlikely to know what is ailing you. By the time you are really sick, many diagnostic labels will have been tried on you. As a result, you will be sentenced to chronic life-long illness and often death because health authorities are agreed on what the verdict is – Lyme is no problem in Canada.
It is essential for the health of this nation that Canadians recognize that this Lyme policy lacks substance. That’s why we undertook this book project.
The insupportable Canadian Lyme guidelines have to be scrapped; they are exclusively based on the legally compromised IDSA guidelines, make no reference to the international protocols, and trivialize chronic Lyme conditions. Lab technicians cannot be allowed to decide what is definitive evidence for Lyme infection. Provincial governments, in charge of health care delivery, cannot be permitted to deny the availability of international protocols. The integrity of our blood supply cannot again be jeopordized. Our doctors must be allowed to think independently when confronting emerging medical conditions, without fear of sacrificing everything, especially their professional integrity. Every family doctor must learn how to recognize and treat Lyme. This is as basic as washing one’s hands.
Further, Canadians must join international efforts to contain this infectious disease, and to expect as a matter of course that every spring the Lyme-tick infected parks and forests in this country will carry warning and instruction signs.
Ending Denial – The Lyme Disease Epidemic – A Canadian Public Health Disaster, the proceeds of which go entirely towards Lyme awareness work, will be a useful tool in this necessary and overdue public health campaign. You will learn from it how to protect yourself, your loved ones, and the health of Canada.
• Ending Denial – The Lyme Disease Epidemic – A Canadian Public Health Disaster, edited by Helke Ferrie, a non-profit joint project by Kos Publishing Inc and the Lyme Action Group: $ 30 per copy, 50% discount for 5 or more copies plus postage. For orders call 519-927-1049 or FAX 519-927-9542
• www.LymeActionGroup.blogspot.com for information on this book and Lyme politics in Canada
• www.CanLyme.com, tel. 250-768-0978
• www.ILADS.org to find a Lyme-literate doctor in North America
• For the 2008 documentary film, Under Our Skin, contact www.underourskin.com
• For reliable, verified testing for Lyme disease: www.igenixinc.com or call 1-800-538-9820
Helke Ferrie is a medical science writer with a master's degree in physical anthropology. Her specialty lies in investigative research into ethical issues in medicine and the politics of health. She started her investigative journalism career in the mid-1990s, looking at issues of medicine and environment. She has been a regular contributor to Vitality Magazine ever since. Helke has also authored several books on various subjects including: "Ending Denial: The Lyme Disease Epidemic", "What Part of No! Don't They Understand: Rescuing Food and Medicine from Government Abuse", and "The Earth's Gift to Medicine". Here are links to some of her works: <a href="http://old.vitalitymagazine.com/book-reviews/review/the-earths-gift-to-medicine/">Book Review</a> Find her book -<a href="https://www.amazon.ca/Ending-Denial-Updated-2013-Epidemic/dp/0988243733">Ending Denial</a> Read her article: <a href="https://thebovine.wordpress.com/tag/helkie-ferrie/">When governments abandon the public interest — look out for your own health</a> Find her book -<a href="https://www.riverwashbooks.com/product/17162/What-Part-of-No-Dont-They-Understand-Rescuing-Food-and-Medicine-from-Government-Abuse---a-Manifesto-Ferrie-Helkie">What Part of No! Don't They Understand</a> Helke has also been a regular contributor for the Vitality Magazine. Links to few of her articles: <a href="https://vitalitymagazine.com/article/the-tyranny-of-government-protection/">The Tyranny of Government Protection</a> <a href="https://vitalitymagazine.com/article/success-story-how-i-recovered-from-lyme-disease-and-hypothyroidism/">Success Story - How I Recovered from Lyme Disease</a> <a href="https://vitalitymagazine.com/article/in-the-news-fluoride-dangers-roundup-lawsuits-and-the-lyme-disease-epidemic/">IN THE NEWS: Fluoride Dangers; Roundup Lawsuits; Lyme Disease Epidemic</a> Helke Ferrie now lives a retired life and can be reached at email@example.com