Persons with Lyme disease, and their families can be faced with a devastating set of circumstances if the bacterial infection if not caught early.
The current health care system in Canada is set for failure when it comes to the all important early diagnosis, and once the disease has been allowed to disseminate unchecked or insufficiently treated early on, the late stage of the disease is completely mismanaged from coast to coast across Canada. Worst of all there is no mechanism to track the disease and it’s cost to society because the medical leadership deny the existence of chronic ongoing active infection despite the abundance of evidence based published peer-reviewed science. Those medical leaders in Canada have for decades owned all aspects of this disease and have made a mess. Our tax payer funded Canadian Institute of Health Research (CIHR) continually funds indirect research that uses the same poor data that got us into this mess in the first place. Poor data in equals poor data out. It is a telling situation that CIHR stresses on one hand the importance of involving patients and their chosen experts at the earliest of stages yet we have been continually denied access to research direction and design relative to this disease. After the fact token review does not equate to collaboration. Canadians must be alarmed. This is the fastest spreading infectious disease in the world and is occurring at rates that far exceed other diseases including breast cancer. We must stand together to insist that our medical leadership follow ethical and collaborative standards and that they stop making claims that are factually non-provable (ie. These patients are sick with something but it is not Lyme disease). All Canadians need to be proactive and force the hand of those people who draw large salaries from our tax dollars to cease their exclusive ways and become completely inclusive and collaborative. Our provincial and federal legislators must set up appropriate oversight or laws if necessary that include patients and their experts. The notion that patients and their experts have no place in discussing and directing diagnostics and treatment has no place in healthcare and must stop as it is a recipe for continuing what has shown to have been a disaster for tens of thousands of Canadians, and these numbers continue to grow. The Canadian Lyme Disease Foundation works with scientists and medical experts on several continents. It is time we were at the table for all Lyme disease diagnostic and treatment discussions, policy decisions, and research recommendations federally and provincially. Jim Wilson (West Kelowna, BC) President and Founder; Canadian Lyme Disease Foundation Jim Wilson has been involved in networking with Lyme victims and providing information for over 20 years. He contracted Lyme disease in 1991 in Dartmouth, N.S. and his daughter contracted Lyme disease in 2001 in the Okanagan Valley of British Columbia. With a background in investigating medical malpractice and legal liability matters, Jim provides unique insight into medical research from a perspective of conflict of evidence and works with medical and science experts around the globe.
12 Comments
Alanna
2/11/2017 06:19:29 am
How do we get treatment in Canada?
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steve hanna
2/11/2017 06:40:30 am
you don't
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Alex
2/11/2017 06:08:14 pm
there are some drs in BC and I even heard of some in ON, but they're mostly naturopathic practitioners
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Elizabeth Rogers
2/11/2017 08:04:28 am
WE need to get this into the papers across Canada...well written.
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2/11/2017 09:26:01 am
Bang on and here's one for you that I've learned the hard way. It tears down your immune system much like AIDS does, leaving one susceptible to Cancer, shingles etc and we all know cancer is big business ... part of the reason there is deliberate and gross negligence by our entire dis-ease management system.
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Shari Blanchard
2/11/2017 10:55:33 am
Thank you Jim for all you do! Great article. Those of us dealing with Lyme appreciate the work you are doing. We live in S/W Ontario, near one of the first areas to be declared Lyme Endemic and we still cannot get effective medical help nor recognition that Lyme symptoms are carrying on. Both my son and I were diagnosed by a medical Dr, and still no treatment that is covered by our medical system. They will only cover 30 days of antibiotics. Soon things will be different!
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Malia McClean
2/12/2017 12:38:54 am
Dealing with health systems in Canada regarding Lyme disease is tantamount to bashing your head against a wall over and over again; painful every time and not much but a headache to be gained. No amount of reasoning or scientific evidence seams to penetrate their dogma. But like every house of cards it eventually has to come tumbling down, I just hope and pray it doesn't take another 40 years.
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Ward Schofield
3/12/2018 05:42:07 pm
I've been fighting this thing myself since 1995 0r 6 and have had no help from the medical community whatsoever. It has ruined my life and and shortened my working career so that I can't afford to see a naturopath or much else for that matter. I am now seeing an MS specialist because they refuse to recognize Lyme or any coinfections. 69 now and reaching the end of my rope.
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Nelda Beecroft
3/10/2020 05:24:10 pm
I spoke to Jim 15 years ago who provided me with some factual and terrifying information. If the movie Under your skin is still available I would get a copy. Not much in the way of seeking help but reasons infectious disease doctors and other physicians will not treat you. I’ve heard doctors call it Lynes disease. I went to California for help and at the time the only known treatment was bombarding you with antibiotics. I did this for a year, with no positive results. I did however; learn that very early stages of Lyme can be treated by Canadian doctors with antibiotics with proof of being bitten, like the bullseye rash. I have been referred to a clinic in Arizona but will need to spend my life savings plus more for effective testing and treatment. What to do? Live my life as a recluse, maybe get cancer, die early from heart disease? I’m in such a bad state physically and emotionally that I am willing to do the research for these clinics and if all is well go for it.
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judith bergen
5/14/2019 10:30:28 am
For every false negative test result for Lyme disease a palliative patient is created in the healthcare system. Their journey within the health care system will be long and painful. Those who can, will take their savings and go to the USA to get an accurate diagnosis. Avril L. did. Shame on Canada.
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