Lyme disease on the national agenda

Lyme disease on the national agenda

A lot of people stand to gain from Bill C-442 tabled by Green Party leader Elizabeth May. The bill calls for a national strategy on Lyme disease in Canada, the absence of which has caused problems not just for victims of Lyme disease but also medical practitioners who recognize the threat but are powerless to address it.

Bill C-442 had its second reading on March 3rd.According to Paul Noble, Legislative Director for Elizabeth May’s national office in Ottawa, the reading went fantastically. “We were cautiously optimistic that we would have support from all parties in the house, and it went as we hoped,” he says.

The bill calls for the Canadian government to:

  1. Develop better public awareness programs aimed at prevention
  2. Share approaches for improved diagnosis and treatment that incorporates the latest science
  3. Create a national strategy to find a cure so that diagnosis, awareness campaigns and treatment are standardized across the country

Lyme disease is the fastest growing vector-borne infectious disease in the United States. While the U.S. Center for Disease Control and Prevention officially reports about 30,000 new Lyme cases each year in the U.S., it concedes that actual rates could be as much as ten times higher. If the expected rate of new Lyme cases is closer to 300,000 per year, Lyme disease would be twice as common as breast cancer and six times more common than HIV/AIDS.

Originally detected in Lyme Connecticut in 1975, it has steadily expanded across much of the northeast United States, and over the past decade, has invaded southern Ontario, Quebec and the Maritimes as well as many areas of southern British Columbia.

US Lyme Disease Cases (2003-2012)

If diagnosed early, the bacteria can be treated with a short, four-week dose of antibiotics. But if left undiagnosed, the bacteria develop defenses against antibiotic treatment and can remain in the body for months and even years. Over time Lyme bacteria attack the immune and central nervous system in the same way that AIDS and syphilis does, and victims suffer from many of the same symptoms.

Battling chronic Lyme disease

Bright 27-year-old Alicia De Cou has been battling Lyme for nearly half her life. For over a decade, she was misdiagnosed with a variety of illnesses from fibromyalgia, neurological disorders, and depression, and at once was even referred to a psychologist.

“She often has anxiety attacks, which is very common for Lyme patients,” says Myrna De Cou, Alicia’s mom. Constant muscle and joint pain has forced Alicia to sell 13 of her 15 horses and give up her horse-training business.

Adult female black-legged deer tick at various stages of engorgement. Photo Courtesy of Government of Manitoba. Original reproduced with the permission of Robbin Lindsay, Public Health Agency of Canada.

Adult female black-legged deer tick at various stages of engorgement. Photo source: Government of Manitoba. Original of Robbin Lindsay, Public Health Agency of Canada.

The Canadian healthcare system and the College of Physicians and Surgeons currently rely entirely on the U.S. CDC for Lyme disease data. Critics of the CDC Lyme Guidelines, which were created by a sub-committee at the Infectious Disease Society of America, say that the protocols outlined in the guidelines are out of date and inaccurate according to the newest Lyme research.

If the bill is enacted in law, the first item on the agenda will be to organize a multi-level stakeholder conference that would allow Canadian doctors to openly question the current diagnosis and Lyme treatments stipulated in the IDSA Lyme Guidelines. The conference would be a first-of-its-kind where all fields of research can share ideas to improve detection and treatment.

“The goal of the conference is to bring together everyone involved,” says Noble, “including medical practitioners, infectious disease specialists, provincial and territorial associations, and victim groups.”

Lyme-literate doctors believe that long-term antibiotics are necessary for treating chronic Lyme, but Canadian standards restrict antibiotic prescriptions to 30 days. Canadian doctors who prescribe medication for longer periods may face investigation from their provincial colleges and could risk having their licenses revoked.

The IDSA does not recognize the existence of chronic Lyme despite contrary arguments from many U.S. and Canadian doctors. Canadian research scientist John Scott wrote to the Suzuki Foundation after the release of the TV Documentary, Ticked Off that, “I have a list of 300 peer-reviewed scientific/medical articles showing the persistence of [Lyme bacteria] after standard 2-4 weeks of treatment with antibiotics.”

Dr. Armstrong, a medical doctor who also practices environmental medicine in Ottawa, specializes in chronic co-infectious diseases. She has seen a steady increase in Lyme cases over recent years, estimating that 5-10 per cent of her patients have Lyme disease.

“I used to go out of my way not to diagnose Lyme because I knew that it was dangerous for me as a Canadian doctor,” says Armstrong, “but when I see how many of my patients have Lyme, I get scared. I think to myself, maybe I am missing more than I realize.”

A strategic conference would be advantageous for doctors like Dr. Jennifer Armstrong who are being forced to refer their patients to specialists south of the border.

Chronic Lyme patient Ken Frizell has been on prescription antibiotics for over four years. In order to get treatment he travels to Linebeck, NY to see Dr. Steven Bock. Ken travels for a yearly clinical diagnosis and has monthly phone consultations with Dr. Bock. Ken estimates that his treatment costs nearly $13,000 per year. Dr. Bock treats other chronic Lyme patients, approximately 500 of whom are Canadian. Ken’s family practitioner was willing to write his prescriptions, but Alicia has not been that lucky. For nearly six months Alicia has worked with a naturopathic doctor out of BC where provincial laws allow naturopaths to write prescriptions. However, in order to progress into the next stage of her treatment, Alicia must search for a doctor in Ontario willing to write the prescriptions for IV antibiotics. If none are willing, she may be forced to travel to BC to receive treatment.

__________________________

To learn more about Lyme disease, its symptoms, methods of diagnosis and prevention measures:

Lymedisease.org
Canadian Lyme Disease Foundation
International Lyme and Associated Disease Society
Public Health Agency of Canada – Lyme Disease FAQ