CFS/ME Doctors in Toronto, Ontario?

[darroo]

@darroo I am in Vancouver, so I am sorry I cannot be of much help or you locally but if you can afford it consider going to the us to get appropriate testing and treatment. You can write travel and medical expenses as deduction in your income tax return.

yeah im in the process of getting ODSP disability have a CFS score of 35 hopefully i can get that then think about whats next...

 

[Kati]

@darroo welcome to the forums. I wish you much luck with your ODSP process. These processes are always stressful and aggravating, know you are not alone! There are 411,466 of us in Canada. the National MEFM Action Network may have good information for you on the website or with phone calls.

 

[darroo]

@darroo welcome to the forums. I wish you much luck with your ODSP process. These processes are always stressful and aggravating, know you are not alone! There are 411,466 of us in Canada. the National MEFM Action Network may have good information for you on the website or with phone calls.

ok thanks kati

 

[charlie1]

This is an old thread but I need to find someone to help me with my symptoms.
@Sparrow Any luck with finding a CFS expert in Ontario. (besides Dr. Hyde). Any specialist anywhere in Canada ??

 

[Mij]

@charlie1 you might have better luck finding an integrative and functional doctor to help you with your symptoms.

Unfortunately, mine retired a couple of years ago so I can't rec anymore.

 

[charlie1]

@Mij Thank-you. Dr. Banner in London is a functional doctor. I was hoping there was a Canadian doctor having lots of experience with CFS especially for Ontario.

 

[charlie1]

@Kati who do you see in Vancouver?

 

[Mij]

@charlie1 my integrative and functional doctor knew more about treating 'symptoms' than the "M.E. specialist" I saw many yrs ago. Unless you are looking for a doctor who has experience with anti-virals etc then that could be a challenge finding one.

 

[charlie1]

@Mij That's interesting that the CFS specialist knew less the the functional doctor! Why are there so few CFS specialists in Canada, let alone Ontario?? I have no idea as to the cause of my illness so its possible anti-virals could help but I've never been tested for viruses so I just don't know .

 

[Kati]

@Kati who do you see in Vancouver?

Hi @charlie1 i see nobody in Vancouver. i go to SF Bay area. There is one dr in Vancouver called Dr Hyams. His practice seems both allopathic and alternative and he has lots of alternative type of treatments for which I personally don't align with. He does disability insurance stuff. He is quite busy as he is the interim director of the Complex Chronic Diseases clinic in Vancouver (which as far as I know doesn't take out of province patients). He has a practice in West Vancouver on top of that.

The second person knowledgeable is Dr Ellie Stein in Calgary who has a part time practice (her wait time last I heard was over 18 months) She is a psychiatrist and patient herself, and I believe has a strong self-management component. She also helps with disability as far as I know.

Both of them have a website.

 

[Mij]

@Mij That's interesting that the CFS specialist knew less the the functional doctor! Why are there so few CFS specialists in Canada, let alone Ontario?? I have no idea as to the cause of my illness so its possible anti-virals could help but I've never been tested for viruses so I just don't know .

The M.E specialist I saw was more of a diagnostic doctor for disability. He did an immune panel but at that time everything was normal. His only treatment was for pain and insomnia. I had neither at that time.

My integrative doctor referred me to a virologist so I did have immune testing, viral testing etc and I tried an immune modulator.

I hope you find someone who can at least do some immune testing. You have to start somewhere. It's frustrating, I know.

 

[meadowlark]

@daroo

Hello daroo:

I am on ODSP for my ME/CFS. It took me more than a year to get disability, as I had to appeal their refusal several times, and finally was scheduled to go to tribunal with my doctor in tow. But at the last minute, my tribunal was cancelled and I was given ODSP immediately. I never knew the story behind that sudden reversal, but I've always fancied that the backlog of cases was so big that the bureaucrats pushed a load of us through as a way of hurrying things along.

On the other hand, I know one person who got their ODSP (she also had ME/CFS) quite easily. So, whatever happens, don't give up. The system is designed to make us give up. If you hang in there and refuse to go away, you will prevail.

 

[Kati]

@daroo

Hello daroo:

I am on ODSP for my ME/CFS. It took me more than a year to get disability, as I had to appeal their refusal several times, and finally was scheduled to go to tribunal with my doctor in tow. But at the last minute, my tribunal was cancelled and I was given ODSP immediately. I never knew the story behind that sudden reversal, but I've always fancied that the backlog of cases was so big that the bureaucrats pushed a load of us through as a way of hurrying things along.

On the other hand, I know one person who got their ODSP (she also had ME/CFS) quite easily. So, whatever happens, don't give up. The system is designed to make us give up. If you hang in there and refuse to go away, you will prevail.

And I certainly suspect that the recent developments (IOM, the new paper) will help all of us getting health care and acceptance. Never, ever give up.

 

[Art Vandelay]

I'm not in Canada, but I've heard through the grapevine that Dr Greg Blaney in Vancouver is good, particularly for Lyme and similar infections: http://stillpointproject.com/about/greg-blaney-m-d/

 

[Kati]

I'm not in Canada, but I've heard through the grapevine that Dr Greg Blaney in Vancouver is good, particularly for Lyme and similar infections: http://stillpointproject.com/about/greg-blaney-m-d/

Look, you want to get diagnosed with Lyme disease? Go see the Lyme disease docs. Even with negative tests they will diagnose you with it and give you months if not years in antibiotics. Ridiculous.

 

[redviper]

I'm not in Canada, but I've heard through the grapevine that Dr Greg Blaney in Vancouver is good, particularly for Lyme and similar infections: http://stillpointproject.com/about/greg-blaney-m-d/

Greg Blaney follows a "modified" version of the Marshall Protocol. I would caution anyone considering him as a doctor to look at the potential health complications linked with that program and do their homework before taking such a risky move.

 

[redviper]

Look, you want to get diagnosed with Lyme disease? Go see the Lyme disease docs. Even with negative tests they will diagnose you with it and give you months if not years in antibiotics. Ridiculous.

I can vouch for this and lived it for the first two years of my illness. It's obviously very easy to prey on extremely sick people, especially those who have been hit by some sort of viral infection

 

[charlie1]

Thanks to all of you for giving me the names of a few Canadian doctors. The western provinces and Ontario seem to be the only places in Canada where there 'might' be help for me. I will start with the functional medicine doctor who has an office 1 hour from me in Ontario. I've seen him before when I first became ill but I was in such bad shape, nothing helped (until Mestinon) but maybe now that I've more or less plateaued I can reassess his treatments.

Unfortunately, the alternative side to him uses 'applied kiniseology" which I personally have no use for but the alopathic side to him does more blood work than I've ever had done in my life! He has prescribed meds to treat issues regarding the lab results whereas conventional doctors have not looked deeper into the significance of my results if the tests aren't flagged as too high or low. My nonexistent DHEA which is continuously flagged is never considered a problem by my GP nor the endocrinologist Oh-oh, I better not get started..... !

Thanks again..

 

[Sparrow]

This is an old thread but I need to find someone to help me with my symptoms.
@Sparrow Any luck with finding a CFS expert in Ontario. (besides Dr. Hyde). Any specialist anywhere in Canada ??

I worked with the Women's College Hospital a bit, though they weren't able to offer much in the way of specifics (they did seem informed and well-intentioned, though). They did connect me with an exercise physiologist who understands PEM, and I think having the doctor's report and the connection of the physiologist have been somewhat helpful when it comes to my disability insurance and family doctor.

In terms of treatment, I've currently given up finding an informed specialist, and have been working with my family doctor based on recommendations from the physician's primer, top doctors in the field, etc. It's really sad how little support there is for us at this point.

 

[charlie1]

I worked with the Women's College Hospital a bit, though they weren't able to offer much in the way of specifics (they did seem informed and well-intentioned, though). They did connect me with an exercise physiologist who understands PEM,

@Sparrow What came of working with the physiologist? Did you learn ways to avoid PEM?