Lyme Disease in CanadaHelke Ferrie May 1, 2014
The World’s Most Common Infectious Disease Is Denied by Health Officials
May 2014 is international Lyme Disease Month. This, my fourth annual update on what Canadians can expect when becoming infected with the world’s most common tick-borne disease, is not for the faint-hearted. Consider the experience of Ashok Debnath from India who was infected with Lyme in Canada. The Times of India reported on March 30, 2014, that after seeing many Canadian physicians for his serious symptoms, Ashok fell into a coma. Nobody was able to diagnose or treat him. After two months in a coma, he was flown back to New Delhi where Dr. Puneet Agrawal at the Max Hospital in Saket made the correct diagnosis, used the appropriate antibiotics intravenously, and effected a full recovery. Dr. Agrawal observed, “It is a common disease in western countries. I am surprised doctors in Canada could not pick this up.”
Tragically, it is no surprise at all! Federal and provincial policy prevents internationally validated and reliable tests from being discussed, and Health Canada discourages their use by Canadians seeking testing in the U.S. (without providing a shred of supporting evidence), warning that such international tests are done in “for profit” laboratories.
Lyme is the world’s most common infectious disease and was declared a world epidemic in 2008 by the World Health Organization. Thus, Lyme is enormously well researched and known to science as the most complex infectious disease: it can cause or trigger Multiple sclerosis, ALS, rheumatoid arthritis, Alzheimer’s, Parkinson’s, scleroderma, autism from infected mothers, heart disease, and a variety of brain diseases.
Lyme is therefore a top medical priority worldwide. Like its relative, syphilis, it is caused by a corkscrew-shaped (spirochete) bacterium called Borrelia burgdorferi which never travels alone, being accompanied by about 30 known co-infecting bugs, and even traveling inside parasites into people and animals. Now the evidence is out that Lyme is also sexually transmissible. The Lyme spirochetes have been found alive and well in human sperm, vaginal fluids, and also blood (a fact published in the flagship journal Transfusion which has so far not impressed Canadian Blood Services).
Worst of all, our doctors are woefully uninformed about all of this. How much is ignorance and how much is fear of losing their medical licence is hard to tell. Some recent examples from my files:
• A Toronto infectious disease doctor was threatened by the CPSO, Ontario’s medical licensing body, with a disciplinary investigation for diagnosing and treating Chronic Lyme. Scared out of his wits, he abandoned the Hippocratic Oath, walked into his office, disconnected all the patients who were receiving their intravenous treatments in accordance with the published treatment protocols, and sent them home.
• A pregnant woman is infected with Lyme in India, and presents with a positive international test as well as a positive Ontario test (that sometimes hit-but-usually-miss-government-blessed test), but is told by the infectious disease specialist “probably this isn’t Lyme but malaria,” demonstrating his ignorance of both diseases.
• A patient’s appointment is abruptly terminated when the doctor walks out on her after he learns that the lingering Babesia infection she came to have treated was left over from the original Lyme infection.
• Another patient has her appointment cancelled when the infectious disease specialist received her Lyme-positive test results prior to the consultation date.
• Some patients are being treated literally secretly by Lyme-literate doctors who take those patients’ files home to ensure they are never found, or even treat them at home.
• A woman who gave birth to a Lyme-infected baby was told to go to the U.S. as nothing could be done in Canada.
• Patients infected with European or Asian strains of the Lyme-causing spirochete are routinely told they must have a Canadian positive test before treatment can start. The Canadian tests still do not include all the known Lyme variants specific to Canada – a fact that Health Canada acknowledges – and so the fiction is upheld that there are only a few hundred new cases annually.
Lyme Surveillance Systems
Canadian veterinary schools teach Lyme diagnosis and treatment in animals correctly, so increasing numbers of Lyme patients are being treated under the file names of their dogs. Generally, however, Canadians go to the U.S., Europe, and India. In the U.S., the Lyme Wars have dramatically advanced for the benefit of the victims – a fact that will eventually cause the same changes in Canada. Many U.S. States have specific legislation to protect doctors who are treating Lyme, and in January of this year the U.S. government passed the Omnibus Bill which, due to the efforts of Congressman Frank Wolf, lymdisease.org, and the International Lyme and Associated Diseases Society (ILADS), includes a $9 million budget with direction to the Centers of Disease Control to develop or support proper tests and Lyme surveillance systems. The Bill also directs the National Institutes of Health to work – at last – on effective approaches to Chronic Lyme.
Enormous help came from three research projects, all published in 2013, which proved that the previously estimated annual incidence of new Lyme infections of about 30,000 was an illusion. The true incidence of annual new cases in the U.S. is now known to be a minimum of 300,000 in some areas and a million in other parts of the country. In addition, the proof that Lyme spirochetes can be sexually transmitted makes Lyme the 21st century’s syphilis – with the difference that we know how to diagnose and treat Lyme, while millions perished from syphilis over many centuries until penicillin was developed. Incidentally, the first reported case of Lyme being sexually transmitted involved former U.S. President George Bush, Jr. and his wife, Laura, both of whom fortunately were treated by an ILADS Lyme-literate doctor. Bush went public about his experience and started the first round of government support for Lyme research and proper treatment.
Insurance Industry Tries to Protect Itself
All this news notwithstanding, the CDC is now engaged in its last, desperate stand to protect the insurance industry which in the U.S. has co-opted the doctors of the IDSA (Infectious Disease Society of America) in a determined effort to keep down costs and hide the facts. Insurance companies do not want to pay for a complicated and expensive disease, and many egos of the members of the IDSA are at stake as they fight to maintain their invalidated views on Lyme. One is reminded of the story of Dr. Ignaz Semmelweis who proved that washing one’s hands before delivering babies prevented childbed fever and maternal death. The leading obstetrician of the day, Dr. Charles Meigs, had successfully fought for decades to prevent handwashing, despite the overwhelming supportive evidence, on the grounds that “doctors are gentleman and gentlemen have clean hands.”
Excellent Reporting Stimulates Patient Activism
On April 17, the CDC announced that only tests from laboratories approved by the FDA will be acceptable. But the fact is that the FDA does not ‘approve’ laboratories. The existing Lyme testing labs meet the licensing requirements controlled by totally different bodies and legislation. However, by creating this totally false impression, insurers can hold out a bit longer and refuse coverage. The whole story and a detailed explanation of what is wrong with the tests that the IDSA, the CDC, and Health Canada promote is found in the April 18th “Lymepolicywonk” entry at http://www.lymdisease.org and will be especially helpful for Canadian patients.
The bottom line is that the testing mess, the truth about annual victim numbers, and the fact of Chronic Lyme all are out of the closet at last. The most succinct and clearly presented description of the U.S. Lyme Wars is found in the January 2014 issue of PLoS Pathogens (http://www.plos pathogens.org). PLoS was founded by Nobel laureate Harold Varmus after he became totally disgusted with the pervasive fraud in medicine which he witnessed during his tenures as the Director of the U.S. National Institutes of Health and the Sloan Kettering cancer institute. Today, PLoS is the world’s largest family of medical journals, permits no industry advertising, and is available free online. Doing research in that vast BS-free zone is one of my life’s great pleasures. Most impressive is the excellent article on “Lyme in Canada” by Anne Kingston in Macleans, March 24. Both are absolute must-reads.
In 2010, I edited and co-authored Ending Denial – The Lyme Disease Epidemic: A Canadian Public Health Disaster which was distributed to all MPs, Senators, MPPs, MLAs, deans of Canada’s 17 medical schools, public health offices, medical associations, and the media. The then president of the Canadian Medical Association, Dr. Anne Doig, wrote on August 11, 2010, thanking the Lyme Action Group for a copy of this book, acknowledging the “devastating impact” of this disease, and suggesting the creation of a Lyme teaching module for medical schools, provided the funds could be made available. So far nothing has happened.
At that time, many doctors in Canada who diagnosed and treated Lyme according to the international Lyme literature, including the Canadian Medical Association Journal articles informing about Lyme-tick endemic areas throughout the country since the mid-1990s, were disciplined for doing so. BC’s regulatory College went so far as to explicitly forbid doctors to test people for this infection even with the near-useless Canadian tests advocated by Health Canada.
Ending Denial received widespread media coverage and public awareness rose dramatically. Since its authors are leading experts in Lyme and the book contains internationally recognized treatment protocols and correct information on testing and its availability (not in Canada), patient activism increased as well. One result was a provincially funded clinic in BC, and the prohibition against Lyme testing vanished while the tests, of course, remain useless. The BC clinic turned out to be a case of insult added to injury. Its infectious disease doctors denied the existence of chronic Lyme and offered only exercise pacing, mindfulness meditation, and support groups to those desperately ill patients seeking help.
When our book Ending Denial appeared in 2010, Canadian researchers, led by John Scott, simultaneously published a slew of reports about Lyme ticks being found in more and more places in Canada. Apparently, you can catch Lyme literally anywhere – songbirds in your backyard drop Lyme-carrying ticks or spread the infection through droppings; dogs and cats playing in the fields return home to pass the ticks on to you on their fur, or the disease through their happy infected slobber; your lover (treated for Lyme for a mere 2 to 4 weeks in accordance with the IDSA guidelines which are a decade out of date) will transmit Lyme to you without even knowing it; and are you sure you want to risk a blood transfusion for yourself or a family member? As reported in March, child arthritis cases are spiking in Canada and are recognized as Lyme infections. From Halifax to Toronto, a five-fold increase has been noted since last year. Indeed, the vast majority of new Lyme cases everywhere are seen in children below the age of 10.
In Canada, the situation has finally become so alarming that Green Party Leader, Elizabeth May, introduced a federal Bill C-422 with the view to create a national Lyme policy, promote an educational program, and make available tests that are actually known to work. Amazingly, this Bill has had all-party support and had second reading.
Two previous provincial petitions signed by thousands of Lyme patients in Ontario were effectively ignored. Now, petitions and provincial Bills are cropping up elsewhere in Canada, and in Ontario intrepid MPP Randy Hillier is working on the third petition which already has almost 4,000 signatures; maybe this one won’t be ignored. An excellent legal analysis detailing the abysmal failure of our provincial governments and Health Canada can be found on the CanLyme website by Ontario lawyer Paul Haefling. His March 8, 2013, letter to Ontario’s Minister of Health expertly shreds the Ontario Public Health reports and advisories, the worst of which is the 2012 Technical Report which is more Lyme fiction than fact.
Resources for Lyme Patients
What can a Lyme patient do at this time? The only helpful advice is to find an ILADS-trained doctor, get yourself tested in the U.S. (see resources) and seek treatment in the U.S. There are a few doctors in Canada who dare to treat Lyme and even know what they are doing – but finding them is the problem. There also are some excellent Lyme-literate naturopaths. Most importantly, you need to get everybody you know to write to MP Elizabeth May (and all MPs) supporting Bill C-422. Collect signatures for MPP Hillier’s Ontario Lyme petition. The truth is out, but it can only become established if supported by those who really know what this all about – the Lyme Disease victims. An action kit for this campaign can be found on the extended version of this article posted on Vitality’s website.
Sources & Resources and Action Kit – Best summary with no-BS sources of all the problems with Lyme Disease:
PLoS Pathogens (free): www.plospathogens.org, R. B. Stricker & L. Johnson, Lyme Disease: Call for a “Manhatten Project” to Combat the Epidemic, vol. 10 (1), January 2014
www.CanLyme.org – for correct information and patient support in Canada. Here you also get the links to the federal government to enable you to support Bill C-422 by writing to Elizabeth May MP
www.lymedisease.org – the single most reliable organization on Lyme Disease in the USA. Go to Lymepolicywonk and read the April 18th, 2014, entry entitled “The CDC, the FDA and Lyme Disease Lab Tests”
ILADS (International Lyme and Associated Diseases Society) provides access to correct treatment information, world-wide research, reliable testing methods, and how to find a Lyme-literate doctor
There are no reliable tests available in Canada. The following are reliable:
• IGeneX inc. www.igenex.com
• Advanced Laboratory Services www.advancedlab.com
• Stony Brook University Medical Center, New York
• Medical Diagnostic Laboratories, Maryland
• In Germany: Borreliose Zentrum – Labor & Klinic
• Ending Denial : The Lyme Disease Epidemic – A Canadian Public Health Disaster, ed. H. Ferrie, second 2014 edition, available at Amazon online at: http://tinyurl.com/nzlae5j NOTE: this is still the best source for all info on Lyme in Canada.
• R. Horowitz MD, Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, 2013 on Amazon at: http://tinyurl.com/nzlae5j
• B. Owens, Silver Makes Antibiotics Thousands of Times More Effective, Scientific American, June 20, 2013. Originally in Nature, June 19, 2013
• For new strategies to treat neurological Lyme: GoodbyeLyme Newsletter, March 9, 2014, www.frequencyspecific.com/faq.php#protocol
• www.flickr.com/groups/lyme3000000 join the movement!
• Beware of a website called American Lyme Disease Foundation Inc (www.aldf.com). This is the worst source of misinformation you can get.
• The information on the sexual transmission of Lyme disease is on the CanLyme: G. Bach, MD, Recovery of Lyme spirochetes by PCR in semen samples of previously diagnosed Lyme disease patients, International Scientific Conference on Lyme Disease, April 2001. For 2014 information on this topic also see: http://journals.lww.com/investigativemed/Citation/2014/01000/Western Regional Meeting Abstracts.
• Regarding the fact that Lyme signs and symptoms are so often missed and misdiagnosed, see: S. E. Schutzer et al. Atypical Erythema Migrans in PCR-Positive Lyme Disease, Emerging 1nfectious Diseases, 2013
• Back in 2010, when I published Ending Denial (now on amazon.ca, second 2014 edition), we did not have the courage to include the use of colloidal silver, even though the FDA had already approved its use specifically for the treatment of Lyme Disease. Now the results of such treatment are published in the June 2013 edition of Nature (it doesn’t get more prestigious than that). A summary of how it is used so effectively with antibiotics is in Scientific American, June 20, 2013 issue, available through google for free.
• Health Canada’s admission that the tests available in Canada are not helpful was published in Canadian Adverse Reaction Newsletter, vol. 22, issue 4, October 2012 and is available for free at www.hc-sc.gc
• The information on Lyme and blood transfusion issues is based on the finding that donated blood has not only been found to contain Lyme’s most important co-infection, Babesia, but that it caused Babesiosis as a result of a transfusion. Lyme spirochetes themselves have also been found in blood, but their appearance in blood is cyclical and one never knows when they come out from deep tissues into the blood and thus become transferrable. The US blood services exclude anybody who has ever been diagnosed with Lyme – in Canada nothing is done to prevent Lyme patients from donating blood. Even if they don’t transmit Lyme (a matter of luck), they are likely to transmit babesia as it is found with Lyme virtually in every case. Sources: US Centres for Disease Control (CDC) 2003 and 2010 – go to blood supply on their website. Also: CLINICAL MICROBIOLOGY REVIEWS, Jan. 2011, p. 14–28 Vol. 24, No. 1. See also: PLoS Pathogens, July 2013, Vol. 9, issue 7. The flagship journal for transfusion medicine is Transfusion. See their July 16, 2009 issue.