2012 The Voice of the People on Lyme Disease

The Voice of the People on Lyme Disease *
Helke Ferrie
Vitality, May 2012

The ancient Romans, not known for their user-friendly policies, knew when to listen to the “vox populi”; even emperors felt the heat when a lot of people made a noise about the same issue. Rome at its height held about a million people. So, what does it take to get the McGuinty government to face the actual facts about one of the worst infectious diseases in the world? How about 3.5 million Ontarians?

MPP Bob Bailey (Conservative, Sarnia-Lampton) presented a petition (November 23, 24, 29, 30 and December 6, 2011) requesting that Ontario’s antiquated Lyme disease testing protocol, which was developed almost half a century ago and is documented to be up to 95% false negative, be replaced by internationally recognized, scientifically validated, reliable, new, FDA-approved tests.  This petition also asked that the government direct Ontario doctors to learn to treat its most devastating form, Chronic Lyme Disease, in accordance with up-to-date diagnostic and treatment protocols. The petition emphasizes that this tick-borne illness mimics catastrophic and expensive diseases like Multiple sclerosis, Alzheimer’s, arthritic diabetes, Chronic Fatigue and Fibromyalgia and that these are facts published since the mid-1990’s also in the Canadian Medical Association Journal (CMAJ). About one hundred Ontario municipalities formally endorsed this petition: that’s 3.5 million Ontarians.

The response from the Minister of Health, the Hon. Deb Matthews, was posted March 19th on the government website announcing “This government is committed to protecting the safety of all Ontarians and their families from preventable vector-borne diseases”. She lists what the government did since 2010  -   when incidentally the book “Ending Denial – The Lyme Disease Epidemic: A Canadian Public Health Disaster” appeared and was distributed to all federal and provincial politicians, Canada’s medical associations, and our universities.

The Minister tells of governmental awareness campaigns, such as “Let’s Target Lyme”, an information effort for the public and health care providers on tick recognition, symptoms, and protection measures (www.ontario.ca/lyme). Public Health Ontario, she wants the millions of petitioners to know, is doing everything possible in synch with the federal government. Finally, the Minister produces what she appears to see as a confidence-inspiring statistic: over the past three years “the number of cases of Lyme disease has remained fairly stable at approximately 100 per year.” We are to believe that this is due to increase in testing and surveillance. Oddly, right across the border Lyme cases are increasing exponentially documenting new annual infection cases in the tens of thousands in each of most Eastern seaboard states; the same is true for Europe.

Oh Lord, give me patience, but hurry, for my heart is sinking into black despair!

The Minister’s response is appalling: it does not address the irrefutable, documented facts outlined in the petition, bypasses the core problem of Chronic Lyme disease, ignores the key demand – current, scientifically validated and reliable testing which is not available in Ontario and forces those who can afford it to go to the US  – and simply re-affirms that all is well with that bogus two-tiered ELISA-plus Western-blot test which MPP Bailey’s petition wants to be make history. How can a government defend a test that is known to be 95% false negative? Even if it is supported by federal guidelines? Truly, Health Canada sees no evil, Public Health hears no evil, and the Ministry of Health speaks no evil.

Healthcare delivery is provincial responsibility – so, the Lyme bug stops here. This inappropriate testing serves the appearance of government diligence in the midst of the storm of the world’s fastest proliferating infectious disease -  faster than tuberculosis and malaria (WHO 2008).

Those 100 cases must have been identified by that antiquated testing protocol which amazingly only recognizes non-North American variants of Lyme bacteria; that means they fell into that potential 5% correctly detected group.  Actually, given the soaring increase in all those chronic disease listed in MPP Bailey’s petition, there likely are  95% more undetected Lyme infections happening annually which necessarily go untreated and, as the possibility of a treatable infection is simply not part of a differential diagnosis, these patients go on to become the victims of those other catastrophic diseases one of whose causes can be Lyme; that would be in theory at least another 1,700 cases annually.

What is really terrifying is the fact that Lyme is transmissible through the placenta as well as sexually. The first documented case of sexually transmitted Lyme was former US President George W. Bush Jr. who transmitted it to the former First Lady.  So, despite the huge advances medicine made in infectious disease prevention, detection, and treatment, here we go back to the 19th century when syphilis was the equivalent our current Lyme disease epidemic.

The April issue of the Journal of Parasitology reports that “millions of Lyme disease vector ticks are dispersed annually by songbirds across Canada.”  The samples taken from 42 bird species identified Lyme infected ticks throughout Canada all the way to the Yukon, causing Canadians to be exposed to this infection “locally without any history of travel” into endemic areas. More than 50 strains of the Lyme-causing Borellia burgdorferi are known to be strictly North American variants, yet “Canadian testing laboratories have not yet considered geographic and genome sequence  variation” resulting in “clinicians [being] unaware of the genetic heterogeneity” of these bacteria; naturally they must miss a correct diagnosis.

In December 2010 the Journal of Clinical Microbiology published a severe critique of our testing protocol by infectious disease specialists at Sick Children’s Hospital in Toronto; this study was funded and co-authored by the Public Health Agency of Canada. The authors discuss the case of a Lyme-infected child whose Canadian test was negative, but the Lyme-specific treatment was undertaken on the basis of symptoms and history and continued regardless of the test result, saving the child’s life.

In 2010 when I co-authored and published for the Lyme Action Group and the national CanLyme “Ending Denial”, I never dreamed that I myself would become infected with Lyme in 2011 – as did my husband, and two of my granddaughters, and that I would also nurse a Chronic Lyme patient through her pregnancy. Nine months were spent worrying about the high probability of a brain-damaged baby being born, because Lyme spirochetes attack the developing fetal brain. Astonishingly, the mother obtained three  (!) positive serology tests over the course of three months in the first trimester, all by that outdated Ontario protocol MPP Bailey petitioned the government about. She was infected outside Canada. The Canadian ELISA protocol cannot pick up infections contracted within Canada through those species’ variants that are endemic North America. Our continental variants of  Borrelia burgdorferi can be delivered through migratory birds, deer ticks, cats, dogs, moose, mosquitoes, male sperm, placental blood, human tears, and breast milk. Yet, her infectious disease specialist who saw our pregnant patient simply announced that she could not possibly have Lyme, even though the Ontario test results were in his hands. A fair guess would be that he did not know what to do about Lyme.

Any reader will wonder why only foreign bugs qualify under OHIP. This is because in Canada the two most definitive antibody responses, named bands  31 and 34, which clinch the presence of Borrelia spirochetes, are omitted from the ELISA testing protocol. Our pregnant patient had positive Ontario test results because she was infected with an Asian variant of Borrelia burgdorferi that the Ontario test does recognize.

In Ontario, a self-satisfied blind government appears to lead a medical profession kept blind too, with a testing protocol that ensures everybody stays blind, because that test too is almost totally blind, occasionally able to recognize a few cases and thereby lull us all into a totally false sense of public health security. How are doctors supposed to know how to recognize Lyme disease when our testing protocol prevents recognition so perfectly? When they do see it, they are unprepared to treat it. All that sophisticated medical research published in the most prestigious international journals is kept out of medical practice by a government policy that ensures complex new scientific discoveries about Lyme do not confuse medical minds with the true facts about this messy disease. A friend of mine summarized current government policy beautifully: “All we need to knock off the human race is a Lyme tick to wreck our immune systems and a cell phone to fry our brains.”  (See my April feature in Vitality.)

Our family got help fast  -  through an ILADS-trained physician and our pregnant friend was treated with daily antibiotic shots during the crucial months of pregnancy when additionally Lyme-mediated potential kidney failure in the mother needed constant monitoring with various antibiotics. During the first six months ultrasounds showed that the fetus was abnormally small, but as soon as the appropriate antibiotic protocol commenced, the baby grew fast to a normal size. Finally, a Lyme-literate homeopath, midwife, and a professor of obstetrics brought about that rare and wonderful event: a baby grown in a Chronic Lyme patient’s body but born Lyme-free weighing 7 pounds 9 ounces; the mother is in equally good health and six weeks post-partum had a negative Lyme serology. This success happened despite Ontario’s insupportable policy which misguides Ontario’s infectious disease doctors. All the thanks go to the research of Dr. Charles Ray Jones, an expert on Lyme in pregnancy who presented last October at the annual international ILADS conference, held in Toronto for the first time. And yes, the rest of us are also on the mend.

Who benefits from this insupportable government policy? Jim Wilson, founder and director of the national patient support group, CanLyme, agrees with the author of the famous book “Cure Unknown”, Pamela Weintraub, writing that the consistent downplaying of the severity of Lyme disease, only “benefits the global medical insurers, who underwrite all of our employee disability coverage who do not want to incur the cost of this global pandemic, and the workers’ compensation boards across Canada.  The pharmaceutical industry benefits greatly by inventing a new drug to treat each of the many symptoms of Lyme Disease, making billions of dollars globally while doing no research to treat the cause of the disease or to find better diagnostic tools.”

Under the leadership of Jim Wilson the Lyme-afflicted residents of BC have worked for more than two decades now to get the attention of their provincial government.  “Naturopaths in British Columbia,” Jim writes, “who have passed the pharmacology exams have been allowed to prescribe and several have stepped up to the plate by diagnosing and treating patients who require antibiotics.  We are hoping the situation is about to improve again in BC. In 2010 the BC government, in response to pressure exerted by the Canadian Lyme Disease Foundation and patients across the province, announced the opening of a Complex Chronic Disease Clinic.  The clinic will focus on chronic Lyme Disease, Chronic Fatigue Syndrome, Fibromyalgia, and Lupus. Board members from CanLyme and representatives from the other disorder groups have played a limited but hopeful role in the set up of the clinic… Interviews for the medical director position for this new BC clinic, housed at the BC Children and Women’s Hospital in Vancouver, were completed at the end of March, 2012.  The clinic is to be operational by May 1st, 2012.”

Terrible as Lyme disease is, it is also true that some of the finest medical minds have figured out its deep and complex puzzles so that many treatment protocols have been developed, some of which do not require antibiotics. Most interesting is the work of Dr. Dietrich Klinghardt who has treated Lyme for decades and discovered that recovery by any treatment protocol mandates that the patient be fully protected from EMF radiation.  In the presence of cell phone radiation, for example, Lyme bacteria and their co-infections thrive and are able to evade therapeutic interventions. His Lyme patients must switch off  main breakers at night and avoid all forms of wireless technology while undergoing treatment. There is a wealth of information out there about healing from Lyme.

But the microbial arms’ race is far from over: we now learn from a Yale University researcher, Dr. Durland Fish, that there exists yet another variant of the Lyme-causing bacterium, called Borrelia miyamotoi, also found in deer ticks. Initially it causes much higher fevers than the traditional Lyme bacteria. In the US, the National Institutes of Health refused funding for its study repeatedly until forced into action by Russian scientists who proved its existence and that it causes Lyme disease.

What will it take before Ontario gets real on this issue? One ray of hope comes from MPP Bailey and his colleague MPP Kim Craitor (Liberal, Niagara Falls) whose admirable response to this Ministerial non-reply is to introduce a private member’s bill in the Ontario soon. This bill is intended to make Lyme disease a political issue requiring a proper response – from every MPP representing those 3.5 million Ontarians whose petition was fluffed off.  Because Lyme disease affects more people than cancer and untreated costs possibly even more than cancer, this is a fiscal issue of the first order.  Those of you who worked to get MPP Monte Kwinter’s Health Freedom Bill passed into law in 2000 know that health freedom is only health promoting and freedom protective to the extent that we refuse to tolerate policies that haven’t a leg to stand on and are a disgrace to public health. May is international Lyme Disease Month. Is it not high time Ontario joins the rest of the world?

Resources:

H. Ferrie, ed. Ending Denial – The Lyme Disease Epidemic: A Canadian Public Health Disaster, Kos 2010. $ 20 plus shipping and tax, call 519-927-1049

For reliable testing and treatments contact www.ILADS.org

In Canada visit the national group www.CanLyme.com; in Ontario  http://lymeactiongroup.blogspot.ca

* As of October 2012, Health Canada has acknowledged that Canadian Lyme testing protocols are deficient, acknowledging in the Canadian Adverse Reaction Newsletter, vol. 22, issue 4, October 2012 (www.health.gc.ca/cam) that the currently mandated tests do not cover the actual variety of Lyme-carrying ticks endemic in Canada, thereby creating the false impression that “there is no Lyme in Canada”. For details see Ending Denial, chapter 3. In October Public Health Ontario  announced a new test which is available under OHIP as of October 22, 2012. This test is called  “Lyme Disease IgG/IgM C6 peptide essay for Borrelia burgdorferi” and it can be ordered by your doctor by calling 416-235-6556; for further information go to www.ohapp.ca/services/specimen-collection-guide.html.  NOTE: In 2010, Health Canada attempted to stop the publication of that University of Alberta research by Prof. Felix Sperling provided in my book Ending Denial in chapter 3, asking the editors of that science journal not to publish it! The editors  published it over Health Canada’s objections and gave me, the editor of Ending Denial, permission to reprint that research in my book. As of late 2012, CanLyme has begun an education program for all infectious disease experts in Canada to enable them to learn about the Lyme Disease prevalence in Canada that has been denied in  Canada for so many years.

 

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