The hidden lyme epidemic in Canada
I live in Ontario and I have Lyme disease. I contracted Lyme here. I was misdiagnosed for four year and I have chronic late stage Lyme. I am one of thousands of people who have this contracted disease in this country. This disease is like AIDS. It affects your immune system and every part of your body and is incurable. It will and can kill a person. Like AIDS it requires long term treatment but with antibiotics not antivirals since it is a bacterial infection.
The most common way of contracting Lyme is through a tick bite but there is science showing it can be passed on through birth and through breast feeding.(1,2) The bacteria that causes Lyme disease has also been discovered in semen although there have yet to have studies on if it is sexually transmitted although the bacteria is a Spirochete a relative to syphilis.(3) We also don`t screen the blood or organ donor supply so it may be possible to contract the disease this way too.(4)
A lot of people have not heard about Lyme disease or they believe it is rare in Ontario and Canada. The main reason for this belief is that Public health relies on the two tier testing method for Lyme disease detection. The first test the ELISA is a test from 1982. This test has been shown in studies to be inaccurate and missing many cases of Lyme disease.(5,6,7) If a person doesn`t have a positive ELISA in Canada then the second test a western blot is not done. The western blot is a better test although it too is not 100%. As a result the numbers of actual documented cases in this province and in Canada as a whole seems low when in fact many cases of Lyme disease are being missed. Using a test for any disease that is less than 50% accurate is unacceptable. People are being told they do not have Lyme disease when in fact they do. Often people are being misdiagnosed with other conditions such as MS, ALS, Parkinson`s, fibromyalgia, CFS and many more. Doctors are not aware that the testing is so poor and although they are instructed by the Health Ministry to make a clinical assessment and not base everything on the test, most doctors still rely on the test since they are not educated in this disease and how it presents itself. Patients are under the impression that if a test is available for a disease that it is accurate or it wouldn`t be used so they don`t question when they are told it isn`t Lyme disease by a negative test. I know this first hand as I had a Lyme test 3 years ago. It came back negative so I thought I didn`t have it. My health continued to decline to where I was disabled by the disease due to the faulty test. This is happening all across this country.
Lyme disease is the fastest growing infectious disease in North America. The CDC shows cases of 30,000 per year but states that the real number maybe 300,000 since the disease is so often misdiagnosed. Of these 300,000 cases many of the States with the highest rates of infection boarder our provinces. For Canada to have annual rates of infection in the low hundreds for the entire country is mathematically impossible. Obviously the disease is here in higher numbers than are being reported. The rate of Lyme disease in the world is reaching an epidemic state if not a pandemic. If a map of infection rates across the world is studied it is clear that this disease is wide spread and invasive yet somehow Canada is not included in this epidemic. How can that be when ticks are carried by migrating birds which migrate to Canada yearly?
People who contract this disease here face being in a fight for their life while battling to get diagnosed. The Government and the Medical Societies in both the province and country are not putting a high enough priority on this life altering disease in fact they are down playing it. As a result the education and general public awareness is dismal at best. People with Lyme disease are unable to get treatment for this life threating disease in this county. No doctors will treat us. There is a growing body of evidence that Lyme disease if not caught early is a chronic bacterial infection requiring antibiotics to fight the infection. I myself have had to go to the States for treatment as do thousands of Canadians or face becoming increasing ill and death. If I had cancer I would be offered options to treat my cancer. Not with Lyme disease. A woman in BC who has Lyme and so do her children was told by her family physician about her son`s positive lab test in BC:
“yes, i know your lab came back positive for a tick borne infection but i’m not going to treat you! go see your guy in the USA . get him to treat you.”
Her other son was told by a paediatric doctor at BCCH:
“i know you have a life threatening illness but I’m sorry, i can’t risk my license to treat you.” (8)
This sort of thing happens to people every day in this country. How is this being allowed to happen in a country that is supposed to provide universal health care? Lyme disease is Canada`s first privatized illness. Everyone especially children are at risk for this disease from a bug that is the size of a poppy seed or a sesame seed. The public and doctors needs better education and awareness and those of us sick need our illness to be recognized and treatment options made available in Canada that are available in other countries.
We need the media to help us with our fight to get Lyme disease recognized as the epidemic it is. A person only needs to do a quick search on the internet on Lyme disease and it will become obvious that this disease is everywhere and spreading like wildfire. Helke Ferrie just wrote a book on Lyme disease called “Ending Denial The Lyme disease Epidemic, A Canadian Public Health Disaster in it she examines the increasing threat to the Canadian public and the government’s blatant ignorance of the epidemic.” Imagine being ill with a life threating disease and learning that all the safety nets in society to protect and help you don`t apply to you because you got bit by a bug. SCARY! Canlyme.com the Canadian Lyme group has story after story of Canadians being denied health care for this disease. This is inhumane. Years ago when AIDS was first discovered those sick were ignored since the disease was thought to be a gay disease. It was only when the disease began to touch everyone especially the children did the media and people begin to realize the horrors of the disease. All of a sudden AIDS and treatment and prevention became a top priority for government and the medical community. Please help us inflicted with this horrific disease get help and force the government to tell the truth about Lyme disease in Canada. We`re sick and dying just like people in the early years of AIDS and no one is looking.
1. Schlesinger P, Duray P, Burke B, Steere A, Stillman A. Maternal-fetal transmission of the Lyme disease spirochete Borrelia burgdorferi. Annals of Internal Med. 1985:(Vol 103) 67-68
2. Schmitz JL, Powell CS, Folds JD. Comparison of seven commercial kits for detection of antibodies to Borrelia burgdorferi. Eur J Clin Microbiol Infect Dis 1993;12:419-24
3. Tilton RC, Sand MN, Manak M. The Western immunoblot for Lyme disease: determination of sensitivity, specificity, and interpretive criteria with use of commercially available performance panels. Clin Infect Dis 1997;25(Suppl 1):S31-4.
4. Engstrom SM, Shoop E, Johnson RC. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J Clin Microbiol 1995;33:419-27.
5. Schmidt B, Aberer E, Stockenhuber C, et al. (1995). “Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis”. Diagn Microbiol Infect Dis 21 (3): 121–128
6. Transfer of Borrelia burgdorferi s.s. infection via blood transfusion in a murine model.
Gabitzsch ES, Piesman J, Dolan MC, Sykes CM, Zeidner NS.
7. Schmidt B, Aberer E, Stockenhuber C, et al. (1995). “Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis
8. Tick andTrust.com Tues. Mar 29/2011 How can you help