Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Tuesday, February 26, 2013

FAQ: "So why can't you get treatment for Lyme disease in Canada?"

Hi Everyone!

A while back, I mentioned that I had started to read Pamela Weintraub's book, Cure Unknown - Inside the Lyme Epidemic.  I'm 2/3 way through the book now, and all I can say is that it is excellent!  

This book is truly a must-read for anyone who wants to better understand the history of Lyme disease and the controversy surrounding diagnosis and treatment.  Weintraub is a fabulous writer, and she masterfully blends her family's personal story with the science and history behind Lyme.
One of the most common questions I'm asked is.....Why do you need to go to the U.S. for treatment?  Why don't they treat it here in Canada?
Wow.....that's a hard question to answer in a couple of sentences.  There is an entire history behind that question.  Just read chapter 32 - The Lyme Inquisition:  Doctors on the Run.  That will give you some background into the craziness of this illness.  I sat in a coffee shop this morning and brought the book with me to pass the time, and I just couldn't leave until I had finished that chapter.  Gripping.
If you have done any Lyme research at all, you have no doubt heard of Dr. Joseph Burrascano.  He was one of the first big U.S. Lyme doctors to treat chronic Lyme successfully, and also to be hauled up before the New York State OPMC (Office of Professional Medical Conduct) in 1999.  For all intents and purposes, he WON that hearing, and we in the Lyme community have benefitted greatly from his research and expertise since that time.
In 1993, Dr. Burrascano had spoken before a Senate committee on Lyme disease, chaired by Ted Kennedy.  His words were sharp and cutting:
There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight.  Unfortunately many of them act unscientifically and unethically....They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own.  They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed.  They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions.  They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest....Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy...even if the patients will suffer.  This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
                                                                                                         Cure Unknown, p. 221
I am happy to report that since then, the U.S. has come a long way in its understanding and treatment of Lyme disease.  Yes, there is still a divide in the medical community.  But one by one, states are passing laws allowing physicians to treat chronic Lyme disease with long-term therapy.
Sadly, Canada is currently at the spot where the U.S. was in the 1990s.  Physicians are bound to adhere to the outdated IDSA (Infectious Diseases Society of America) guidelines, or else suffer repercussions from the medical boards.  Canadian doctors who have helped a great many Lyme sufferers in the past few years, have been shut down one by one.  Some have chosen retirement, and others have stopped treating Lyme patients cold turkey.
I think the reason for this lag in understanding is the simple fact that Lyme disease is relatively new in Canada.  It has been working its way northward for many years, and now it is HERE in full bloom.  But doctors here don't know what to do with it!  They have no training in how to recognize it, diagnose it, and treat it properly.  So, Canadian Lyme patients are forced to flock to the States and pay out of pocket to regain their health.
In a nutshell, there's your answer to, "Why can't you get treatment in Canada?"

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