Canadians trapped in Lyme disease limbo
Two Hamilton-area women are among the growing number of Canadians with Lyme disease paying tens of thousands of dollars to get antibiotics in the United States because of a rift in the medical community over how to diagnose and treat the infection.
“It’s a very controversial topic,” said Dr. Michael Gardam, director of infection prevention and control at Toronto’s University Health Network and one of the province’s leading experts on infectious disease. “The medical community and the general community are fairly divided about what should be done … probably both sides have a point.”
At issue is how to interpret two tests that diagnose the disease and how long patients should be on antibiotics.
Canadian doctors who have gone beyond the accepted guidelines of giving antibiotics for a maximum of 30 days have been investigated by their regulatory colleges and, in some cases, given up their medical licences.
The disease is terrible and growing.
The Canadian medical profession in general should ‘get with the program’ asap for the sake of a growing number of patients across Canada.
We at the Canadian Lyme Disease Foundation have been wondering where Canadian doctors are getting their faulty information from and have found that they are directed to … http://www.uptodate.com/contents/diagnosis-of-lyme-disease?source=see_link
The information contained therein is very poor, lacking in level 1 science, and should never be used to direct patient care, for diagnosis or treatment.
We will be undertaking a complete review, and we will be seeking a means to get this poor, out of date information out of the hands of doctors in Canada.
My Ontario GP returned Lyme documents I provided to her from ILADS sources. In the returned package was the referenced uptodate document of which one of the editors was Dr Allen Steere. She circled, underlined, and highlighted different sections of the document. The thing is, she never discussed it with me. I confronted her about the document and asked her if she thought I had lyme. She said no I don’t have lyme. I then asked if I don’t have lyme then what was her diagnostic plan. She said until the Ontario tests change ,which I showed negative, I don’t have lyme. She then released me and said I should look for another GP.
Note: I was diagnosed with lyme in Jan 2011 and have been treated in the US since. This GP was kept abreast of my treatment. I used the symptoms form from CanLyme and talked to local lyme people.
She did not like that I took it upon myself to be diagnosed in the US and had labs by Igenix.
Just another real example of how the medical community treats lyme patients and uses mis-information to avoid people with lyme in their practice.
I have just been diagnosed with Lyme via a Western Blot test from California. where can I find a Lyme doctor to treat me?
hi there! I feel that I am having an exacerbation of my Lyme disease–it was treated several years ago–am having so many of the same symptoms
oliver
I am a “long term Limey” and can’t really pin-point when I was infected but have been treated for many different diseases over the past 5-6 or more years that I now know are associated with Lyme Disease. I located a Doctor in the States who treats Lyme Disease and just heard yesterday that I have an appointment with her in 4 weeks time. Meanwhile, I have been seeing a local Naturopath for help with some of the symptoms. I still have to take my heavy duty meds prescribed by my family Dr. for the pain. however, since seeing the Naturopath I have been able to cut back on the pain meds and just take the bare minimum to help keep me going.
As far as my family Dr. is concerned, he is not happy that I have gone elsewhere for help in treating the disease and has tried to tell me that it is all a scam. However, I have convinced him that I want…(NEED) a team of health care people looking after me and that includes him, my Naturopath, chiropractor and the Dr. I am planning to see in the States. I have asked him to be part of that team and he has agreed to that….so long as I don’t ask him to do anything “too far in left field” … as he puts it!
Since having a positive blood test my Dr. sent me to 2 different infectious disease specialists who just read the letter that he had sent to them and proceeded to tell me they didn’t think I had Lyme Disease. I paid privately (almost $1000.00) to have a blood test done in the states…it came back with the same results as the test my Dr. had done earlier.
At last I feel that I might be getting somewhere and although it is going to be a huge undertaking to go to the States for treatment, it is my only option. I know the Doctors here in Ontario are only doing what they are taught but they really need to think outside of the box. Our local Health Unit can’t understand why they are not keeping up with the information on the Lyme Disease in our area. Some of our local Doctors are still telling their patients that Lyme Disease is very rare and unlikely to be around here. Meanwhile, just on a very short stretch of my road, there have been 10 cases of Lyme…4 in humans and 6 in dogs… very rare eh?
I can give you the name of the Doctor I am seeing in the States but I am not sure how to go about that. Are we under confidentiality rules on here??
Hi there,
Sorry to hear you are suffering again. It is quite possible that the Lyme Disease has reared it’s ugly head again. As I understand things, it can stay dormant in your body for years and reappear when you least expect it. Sometimes when your immune system is under stress. I would encourage you to take care of your body, eat healthy, get lots of rest and get help as soon as you can so that it doesn’t get too far out of control. Good luck and hope you feel well again soon.
Please contact me, jimwilson [at] telus [dot] net and I can put you two in touch. We prefer not to have Dr.s name publicized (unless the doctor is already as a publicly known Lyme doctor).