Proper tests, doctors trained on diagnoses and treatment needed

To the Expositor:

Your article on Lyme disease on Manitoulin Island published December 7 was most welcome. I would like to add a few comments. I unfortunately know only too well what I am talking about. I have had Lyme twice (the classic rheumatoid variety); my husband, who is a doctor, had it twice as well; two of our adult children and two of our grand children had it (both infected in India). Only my husband had the bull’s eye rash. I became ill just when I had completed the editing and co-authoring a book on Lyme disease for Canadians and was totally alert to the problem and, therefore, we were all able to get properly tested and then appropriately and successfully treated.

I am a medical science writer and published in 2010 ‘Ending Denial – The Lyme Disease Epidemic: A Canadian Public Health Disaster.’ Recently updated, it is available through amazon.ca. The book was published pro bono and profits go to Lyme advocacy groups. The authors are among the most respected researchers in the field working at Canadian universities and their work is published in the leading medical science journals. The appendix provides the correct testing information and the entire treatment protocol. There are also available excellent treatment methods that do not require antibiotics. The title is by no means an exaggeration, given the World Health Organization estimated as far back as 2005 that in Canada alone there are about 35,000 newly infected Lyme patients every year; in the US, the Centers for Disease Control estimated about three years ago that annually about 200,000 new infections occur in the US. There the government moved into high gear recently; a crucially helpful bill was passed a week ago by the US Congress and Senate.

In 2014, federal NDP leader Elizabeth May introduced Bill C-442 with the full support of the Canadian Medical Association. She did so on the basis of the book mentioned above of which free copies were distributed to every MP, MLA, provincial MPP, all Canadian public health authorities, medical schools etc. Among her constituents were Lyme patients totally crippled by the disease and unable to get medical help at home.   C-422 provides for the availability of effective internationally recognized tests in Canada and mandates educational programs be initiated to make Canadian doctors aware of the problem. Bill C-442 passed with the unanimous support of the House of Commons and then the Senate and became law at the end of 2014. Progress is being made, but slowly. Most Canadian Lyme patients (if they have the money) still go to the US for proper confirmatory diagnosis and subsequent treatment. The few Lyme-literate doctors in Canada in practice can barely cope.

It is important to know that Lyme disease in both animals and humans has been endemic on this Island for many years. I have personally assisted a number of people on Manitoulin in getting proper tests and treatment in the GTA after they had erroneously been diagnosed with Multiple sclerosis and Chronic Fatigue Syndrome.  As has been reported for years in the international mainstream medical literature (easily available on PubMed), a Lyme infection can cause symptoms identical with MS, rheumatoid arthritis, ALS, autism (via a Lyme-infected mother during pregnancy), Crohn’s, Alzheimer’s, Parkinson’s, scleroderma, ADHD and heart disease (especially sudden heart attacks). Until 2014, the attitude of Health Canada, the national public health agencies, and the provincial Colleges of Physicians and Surgeons, which regulate medical practice, was that there was no Lyme in Canada and consequently no proper tests were available for humans. The attitude of the colleges regulating veterinary medicine was exactly the opposite and totally science-based in diagnosis as well as clinical application, as reported by Dr. Janice Mitchell of Mindemoya. The tests used by vets are reliable, the tests mandated until recently and still mostly used for humans are not and prone to false negatives—never, to my knowledge so far, false positives. Even though the flagship journal for Canadian doctors, the Canadian Medical Association Journal, published excellent research on Lyme disease and its incidence in Canada starting in 1995, very few physicians in Canada were and still are Lyme-literate. Indeed, some of the most important research on Lyme in humans was done at Canadian universities, but only bore fruit in the US and Europe.  Some of it is published in the book mentioned above.

To be Lyme-literate means being trained by and aware of the research and clinical guidelines of the International Lyme and Associated Diseases Society (ILADS). ILADS-trained doctors will, for example test every patient with an original diagnosis of the diseases listed above for Lyme before they do anything else. Treatment with the appropriate antibiotics for the required length of time can reverse even advanced illness.

The information reported in your article from the Sudbury District Health Unit is not up to date, I am afraid. Beyond doubt the reason SDHU has seen so few cases of Lyme is because people don’t/can’t get tested for Lyme–the symptoms suggestive of all those other diseases obscure the fact that an infection, treatable with antibiotics, is one possible cause. Naturally, there won’t be much Lyme in Sudbury and surrounding areas when no proper tests are available. Furthermore, the black-legged ticks are not at all the only Lyme-transmitting ticks, and the famous bull’s eye rash, which is supposed to be diagnostic hallmark of a Lyme-transmitting tick bite, only occurs in about 60 percent of cases; the rest of infected patients have no such sign. While undoubtedly protective precautions, as mentioned in your article, are a very good idea, the main problem is the availability of proper tests and doctors trained to recognize, suspect, and treat this infectious disease. For example, a multiple sclerosis diagnosis has horrific implications for the patient and medicare when compared to an antibiotic treatment that restores health completely at a fraction of the cost of MS treatment and care.

Lyme’s origins go all the way back into the Upper Paleolithic about 50,000 years ago in Europe. In the first half of the 20th century new strains began to develop (about a dozen species of the causative burgdorferi bacteria are now known and evolved in the past 30 years), as diseases go through evolutionary ups and downs and dormant periods. In the 1970s it was again identified in Lyme, Massachusetts, hence the name.

Any reader who wishes further information can contact me at helkeferrie@gmail.com. The best sources for help and reliable information are the Canadian national Lyme patient support group CanLyme.com and ILADS.org.

Helke Ferrie

Sheguiandah