CFS/ME Doctors in Toronto, Ontario?

[LisaCanada]

Hello all,
My husband has been suffering from CFS/ME symptoms for almost 2 years now and we have yet to find a doctor in the Toronto area to help in the management of his condition. I have asked our doctors office to put 4 referrals to Rheumatologists in Toronto and all of them have declined my husband. I know that Dr. Bested takes patients through the Women's College Hospital, but the wait time is approximately 9 months. I was wondering if any of you could tell me of doctors in Toronto taking patients for CFS/ME? Your advice and guidance would be so appreciated. Thank you in advance.

 

[Kati]

Lisa, I am not from Torontoso I can't help you here, but it wouldn't hurt to put in that referral for Dr Bested regardless, just in case. Good luck! also try the MEAO for recommendations for physicians, and perhaps the National Me/FM Action. Good luck, and your husband is lucky to have you!

 

[Sparrow]

I am in southern Ontario as well. I have not yet been able to find anyone in the GTA that I would recommend. If you haven't already, I would suggest filling out that paperwork for Women's College ASAP in case you can't find anyone else sooner. It has been my experience that dealing with doctors who have not specifically chosen to focus their career on ME/CFS is difficult and not particularly helpful for us, regardless of how much information/research/suggestions you are able to collect or bring with you. I'm sure there are exceptions (and if you find one, please tell me!), but I haven't had too much luck. So far my family doctor is still my primary resource here.

If you're interested in having someone more willing to investigate for you, I have had some success with a doctor who is a naturopath as well as an MD. You can also look for "integrative medicine". They seem a bit more open-minded about learning about things they are not already familiar with. My guy is not really a CFS expert, but he has been helpful when it comes to things that I have come across and need a medical opinion on. Down side, he also seems not to want to handle the "conventional medicine" side of things as much as possible.

Outside of that, so far I will be looking a bit farther afield for a specialist. I imagine in a city that size, there must be doctors who would be willing to help at least with basic symptom management or acting as an insurance liaison, but I just don't know who they are, and it's tough to find without an recommendation. I'm hoping somebody else will have suggestions here!

 

[waiting]

Lisa, as Kati said, if you haven't already, your best bet is to call the MEAO (Myalgic Encephalomyelitis Association of Ontario). Their info line is [In Toronto, 416.222.8820; Toll-free across Ontario 1.877.632.6682].

 

[LisaCanada]

Thank you for your responses. I have already contacted the MEAO and they emailed me a list of potential doctors that may be taking patients. I have contacted "all" of them on the list and they either were not taking new patients or did not accept him for an appointment. I have not contacted the National Me/FM Action and I will now based on that suggestion, thank you. My husband just started seeing an Naturopathic Doctor last week so if nothing else at least he has that. If anyone has any specific names of doctors that they are seeing in the Toronto area please let me know. I am going to keep sending referrals until someone takes him on. Thanks again. Lisa

 

[Dufresne]

It's been a while since I was in Toronto so I don't know if this info is still valid. Two doctors possibly worth looking into would be Zoltan Rona and Kathleen Kerr. It cost me a few hundred to get going with Dr. Kerr but the actual appointments were covered by OHIP. She was fairly open to trying new things and has a balanced approach. She offers IV therapies out of her office. If I were living in Toronto she'd be the doctor I'd choose.

Dr. Rona has opted out of OHIP so that route is rather expensive. I think he asks at least $500 for the first visit. Subsequent appointments will cost you more, minus what you can reclaim from OHIP, which will be your responsibility.

 

[LisaCanada]

Thank you for your advice. I will look into your suggestions. If there are other Doctors that anyone knows of covered by ohip please advice. Thanks again.

 

[Daffodil]

finding any real help for CFS in toronto, covered by OHIP, will be impossible. i have been at this 20 yrs. i have found some doctors willing to work with a protocol developed by american doctors, however. for example, i bought gcmaf from USA and my toronto doctor will order the bloodwork i need.

dr. david saul in north york is a great, open minded doctor. he is very familiar with CFS/FM but so many people wanted to see him, that the last i checked, he only sees patients for a 1-time consult, then sends a letter with his recommendations to the patient's regular doctor. i am not sure what treatments he favors at this point.

xoxoxo

 

[TheMoonIsBlue]

finding any real help for CFS in toronto, covered by OHIP, will be impossible. i have been at this 20 yrs. i have found some doctors willing to work with a protocol developed by american doctors, however. for example, i bought gcmaf from USA and my toronto doctor will order the bloodwork i need.

dr. david saul in north york is a great, open minded doctor. he is very familiar with CFS/FM but so many people wanted to see him, that the last i checked, he only sees patients for a 1-time consult, then sends a letter with his recommendations to the patient's regular doctor. i am not sure what treatments he favors at this point.

xoxoxo

Daffodil, have you ever considered a consult with that doctor in Canada, Dr. Byron Hyde?

Not a consult for possible treatments, because it looks like he is mainly focused on testing a patient with ME/CFS for every other possible conditions that could have been missed over years, or other things contributing to the persons illness?

I dont know, may be a waste of time, but if it is cheap with your insurance.....?

 

[Daffodil]

Hi Moon. Thank you for the suggestion. Many years ago, I called and emailed Dr. Hyde. As you said. he was primarily interested in research and not treatment....so he wouldn't be of much use to me now, since I have had all the testing done. When I contacted him years ago, he was not seeing new patients but that may have changed now. I wasn't too impressed by him in regards to helping patients...though I have never actually seen him.

 

[TheMoonIsBlue]

Yeah, it looks like he does more of sorting out patients who may be "misdiagnosed" or getting a "real M.E." diagnosis (dunno what qualifies).

I was reading over some of his routine tests and it doesn't look like he looks much for stealth infections? Like herpes, .... Other than Lyme? I think that could be a real problem for many people because I think there is a whole subset of "stealth infection CFS patients" who wouldn't qualify for this "M.E." diagnosis but who are obviously sick with neuro immune problems, or inflammation.

Sorry, I used too many " " quotation marks in this post. Atleast I don't use "Air Quotes" when talking in person. ha

 

[Daffodil]

LOL i love air quotes. they make me feel important LOL

 

[TheMoonIsBlue]

LOL i love air quotes. they make me feel important LOL

LOL !!!! It does give a person a feeling of what they are saying is really important doesnt it. They are fun to use. Plus they annoy others hehe

 

[Rlman]

dr hui in Toronto gives adrenal thyroid help and ivs. He's an MD but no longer covered by OHIP bc he has his own private clinic. not specialized in CFS though like the US docs.

 

[Daffodil]

$#%$@#!@#@#%$ I cannot find anyone here to prescribe IV abx. @#@##@#!@!

now I will have to move to BC for 3 months. how can I afford that and do it while sick ughhhh

 

[Marigold]

Following! In the waiting list at Women's College hospital - Emvironmental Health Clinic (which is 13 months long). FYI everyone, Dr. Bested is no longer there. She is out in BC now at a newer clinic. While I wait, I am looking into Dr. Hyde plus the Canadian College of Naturopaths (they have CFS support groups, etc). I will exhaust every avenue in the GTA and Ontario and keep you all posted!

 

[darroo]

Dr Bested isn't in Vancouver anymore not sure how to get referal to her either

 

[Kati]

@darroo where are you located?

 

[darroo]

Im in toronto Canada

 

[Kati]

@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.