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Family and Chronic Fatigue Doctors in Toronto, ON?

Discussion in 'ME/CFS Doctors' started by stasik, Aug 7, 2013.

  1. stasik

    stasik

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    Hello all,

    I really need some help with my situation. My Family doc is really unsupportive. He literaly told me "I do not know what is wrong with you" and that he doesn't know what to do with me. He is also becoming really cranky and abrasive in dealing with me. He doesn't even talk to me sometimes, several times he would just get up and walk out to his next patient, before I realized the appointment was over. I was talking to a therapist about this and he suggested I try to find a different practitioner.

    I really don't have the will or the energy right now to bounce around dozens of doctors looking for a decent practitioner, so if anyone has any suggestions for a friendly and knowledgeable doctor in the GTA area, particularly in North York or Downtown, I'd really appreciate it. Also someone knowlegeable in dealing with Chronic Fatigue or Immune Disorders and food sensitivities in particular would be really helpful.

    I am just about past my limit in being able to cope with this and go on living. I need some professional help RIGHT NOW, or at least some hope for improvement in the future.

    Thanks, any advice is appreciated.
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sorry no one has responded to this, could be a Canadian thing?

    Dr Byron Hyde might be able to help? Here is his website:

    http://www.nightingale.ca/

    GG
     
    stasik likes this.
  3. Kina

    Kina Moderation Team Lead

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    It's likely not a 'Canadian thing'. It might just be that there are aren't too many members in Toronto and there aren't that many good ME doctors in the area. Byron Hyde is a private practitioner in Ottawa which is four and a half hours away from Toronto. A first appointment costs about a 1000 dollars and then there is the cost of tests not covered by OHIP.

    You might find one on this website -- http://fmcfsme.com/doctor_database.php?c=Canada&s=Ontario#city
     
    stasik likes this.
  4. Dufresne

    Dufresne almost there...

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    My favourite GP in Toronto with knowledge of ME/CFS was Kathleen Kerr. She ran quite a few tests and was open to trying treatments I was interested in.

    Zoltan Rona seems like a pretty decent and open minded doc, but you’ll definitely have to bring your credit card for that one. First appointment is over $500 the last I checked.

    I saw Byron Hyde for a year and wouldn’t recommend that. He runs lots of tests but isn’t much interested in treatment or discussing ideas of ME/CFS differing from his own.

    Karim Dhanani is a great naturopath working in Richmond Hill. He follows a lot of the stuff Klinghardt is into with a particular interest in Lyme Disease. He uses homeopathy, IV therapy, ozone, etc. He’s a bright guy and very kind. For a naturopath of his caliber he’s reasonably priced.
     
    stasik likes this.
  5. stasik

    stasik

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    Oh wow, that is a good list, thank you.

    Who know's maybe it is the stout Canadian beer and cold winters that have protective effects?

    I searched this forum and one lady that was mentioned was Dr Bested who, when I called some time ago wasn't taking any patients, and now is apparently in Alberta anyway.

    Dr Jaconnello looks promising from that list, I just already spent money going to various N.Ds and wanted to go the proper medical route, so was looking for specific recommendations. If anyone knows a good family doc in TO that might be helpful in addressing food sensitivities and GI issues, that would be helpful. I was sent to a gastroenterologist who started anaesthesising me to shove a tube down my throat before I even had a chance to explain what my complaints are, and family doc just shrugging it off...

    EDIT....

    Ok I type too slow. Thanks Dufresne, that was exactly what I was looking for!
    Are you having success between those 3 folks?
     
  6. globalpilot

    globalpilot Senior Member

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    For food sensitivies and GI issues in general, Dr Direnfeld may be able to help. He is a GP.

    I've heard Dr Grover, gastroenterologist is great. He wouldn't take me as a patient so I'm having to go to the US to get proper help. Maybe he'll take your case. If not, he may be able to find someone who can.

    GP
     
    stasik likes this.
  7. Dufresne

    Dufresne almost there...

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    Actually I’ve done much better on my own with help from the docs who’s work is online or available in books. I used Dr Kerr in 2006 when I was first diagnosed and she was good to get me started. Dr Hyde’s tests turned up a few abnormalities back in 2009 but was otherwise unhelpful. Dr D (2011) was good to work with but I didn’t make any discoveries at that time.

    Zoltan Rona is a good bet for food and gut issues, but he’s not covered by OHIP. You’ll get reimbursed a few bucks every time you see him but you’re still going to pay out of pocket regularly and that first visit is ridiculously expensive. I think he’s also into making a lot more on the supplements he sells out of his office.

    There’s an allergist who does all the food sensitivity testing named Bernard Zylberberg. That visit is completely covered. Skin testing is a bit hit and miss, but he got me right. He’s worth it.

    If you’re interested in electro-dermal screening, provocation/neutralization therapy and such there’s a Dr Marian Zazula who practiced in Mississauga. Your time with him is covered and the other costs, for bottles of P/N are fairly cheap. I didn’t get much out of it all but he might get you on the right path. And if you’re into homeopathy there’s a phenomenal practitioner in his office named Yuriy Berezovsky.
     
    stasik likes this.
  8. stasik

    stasik

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    Wow Dufresne, you've been to quite a few docs. Must be quite a hassle. I hope it was worth it in the end.
     
  9. Daffodil

    Daffodil Senior Member

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    i have had this disease for over 20 yrs and live in toronto. i have seen a lot of specialists and spent well over $100K. sadly, i think you are wasting your time looking for doctors here. you will have to save up a few thousand and see dr. kenny demeirleir in belgium. there is just no other option, as far as i am concerned. you will need the most accurate testing, which only he does. he focuses on the gut, too. trust me...just don't even waste your time and money - and precious energy doing anything else. no one in toronto understands this disease....the most you can do is find someone who will be kind enough to prescribe the medicine that the out-of-country doctor recommends. i would bypass the USA altogether...there is no reason for a Canadian to go there. the doctors charge ridiculously high fees and demeirleir's testing is even better than theirs.
     
    Bessie, Snowdrop and stasik like this.
  10. stasik

    stasik

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    Thanks very much all the responses.
    20 YEARS? Wow, I am both impressed and saddened. I have been at it for about 3-4 years now, but have started to feel unbearable about 2 years ago due to the cognitive effects and extremely strong feelings of malaise to the point where I think of suicide pretty much every day. In face of that fatigue seems less important.

    This seems far-fetched, but I am definitely considering this after some crazy treatment options. Since I don't really see how I can get any worse, I decided to take stuff and see if it helps me, so have taken prednisone and antibiotics off the books, among other things, and now considering a trip somewhere for fecal biotherapy ( if you are not familiar, they stick people's poop up your bumhole, but it's more scientific if you have a white labcoat on :)) My only trouble is that I find making travel arrangements very difficult in the same province, let alone overseas. I would SO love to go on a trip somewhere right now, but I am quite limited by not knowing just how I am going to feel tomorrow and by my diet.

    I have seen a CFS doctor, John Molot at the environmental health clinic but I am not convinced that this diagnosis of CFS is correct. I am leaning more towards an immune reaction to substances. I am definitely noticing the effects of diet on my well being. After stopping to eat rice and seed oils I have improved very dramatically. However that was short lived, and I am yet again in a situation where my very limited diet seems to be making me feeling ill and quite desperate.

    The problem is I am so tired of seeing all these people I find it easier just to ignore the problem than seek help. It took me about 2 months after I first thought about it to even make the original post. So I guess an important question would be whether this guy has helped you get significantly better? I certainly hope so and wish the absolute best for everyone.
     
  11. Daffodil

    Daffodil Senior Member

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    hi stasik. i am sorry this is so difficult. let me just say its a miracle i am still alive. i was suicidal for several years because the CFS was unbearable - once even going as far as sending money to switzerland clinic to be considered for euthanization. right now, it is understandable that you don't want to exert yourself traveling....but it is very possible that you will worsen. you don't think it can get worse, but it can. I crawled all over the place....through so many airports....while vomiting and God knows what. it can be done. don't even bother with environmental health clinics and don't even bother with the US - unless you go to reno and see dr. demeirleir there - but i am sure it will be more expensive than belgium.

    since i have been sick so long, i am not significantly better yet. i am on gcmaf, which i took through dr.enlander in NYC, but this is part of dr. demeirleir's protocol too (he was one of the first ones to use it for CFS). this helped me a little. i started dr. demerleir's gut treatments just 2 months ago. i might be a little better from that, but i am not sure yet. for me, it will take a very long time for me because the longer you have this, the more complex it becomes.

    i do know some people who are much better after seeing dr. demeirleir and i also know some who are not....but in general, he is your best bet at the moment.
     
  12. taroki

    taroki Senior Member

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    Cool, I was recommended to Karim Dhanani also by my biological dentist's assistant. I do not have Lyme disease but I am looking for someone in Greater Toronto Area with knowledge of MTHFR/CBS/MAO-A and is familiar with treating patients with these conditions incl Fibromyalgia/CFS.
     
  13. Rlman

    Rlman

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    Hi Dufresne, did you see Karim? If yes, was he helpful? I have an appointment with him next week after over 1 year wait. From internet it seems he does Vega machine for testing sensitivities, MORA machine, BETA machine, lots of homeopathy. Pretty expensive and not sure how accurate these machines are for diagnosis. Does he just treat with homeopathic remedies, oxygen and MORA?
     
  14. Rlman

    Rlman

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    Recently found website of Dempster Clinic in Toronto, they test methylation, pyrroles. Seems like functional medicine with ND. thedempsterclinic.com
     
    Last edited: Feb 25, 2014
  15. taroki

    taroki Senior Member

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    Thanks for the link. Is he a new doctor? I haven't heard of the Dempster Clinic before. I just found out I do in fact have Lyme Disease, and possibly co-infections. I am looking at LLMD's in the states but first I need to detox some mercury (just ordered a portable infrared sauna) and do liver flushes to get rid of my liver/gallstones before starting Lyme treatments.
     
  16. Dufresne

    Dufresne almost there...

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    I only saw him for a short period of time. He was remarkably openminded and we tried a few things most other docs would not go near. I made a few discoveries through him, so yeah, it was worth seeing him.

    He's into Sanum homeopathy, and I hear he might be doing some neural therapy on the side, though don't quote me on that. He has some cute toys that are worth trying. I don't know what your specifics are. If you're on the Lyme/mold path he'll be great. I don't think he sees as many people with a true ME/CFS presentation, but I don't know that these folks should be treated any differently anyways. Either you tolerate the treatments or you don't. At the time I was there a few years back I wasn't tolerating anything and I didn't see any improvement.
     
  17. Rlman

    Rlman

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    Hi Dufresne, thanks for the info. I think I'm CFS/ME type, adrenal fatigue and don't really see how his tests like the BEV machine could help me find a good diagnosis. I don't mind going to him, but he's expensive. Got an appointment scheduled for next week after over a year wait. Did his machines help find anything useful about your health condition like cause, sensitivities? What kind of treatments did he give you?
     
    Last edited: Feb 26, 2014
  18. Dufresne

    Dufresne almost there...

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    Hi Riman, I don't know what a BEV machine is. Maybe he didn't have it when I saw him, which was two or three years ago. He did his live blood analysis and told me his thoughts and suggested I get tested for Lyme. Indeed it turns out I'm positive for borrelia and babesia, despite testing negative by ELISA for borrelia twice in Canada. I've corroborated this as well with homeopathic trials of these nosodes and they produced die-off. So he cleared that up for me. He did some electrodermal testing for Sanum remedies and got me on those too. During that screening he remarked with surprise that my entire spinal column was inflamed. Well that's what encephalomyelitis is, right? I wonder if this doesn't confirm that I'm really in the ME/CFS camp. As I said, he did seem surprised by this. And seeing as he sees so many Lymies, maybe that is the difference between the two, even if there is overlap.

    I did some oxygen therapy and that didn't help any. I tried the MORA machine and that produced die-off. He was very open minded and facilitated a trial of TPN for me, which I don't think I could have convinced any other professional to do. That right there earned my undying respect (even if it didn't produce the effect I was hoping for). I can't stand professionals without a sense of adventure.

    He's into Klinghardt, Shoemaker, etc, and he's up to date on all the latest. I imagine he's the right guy to see for Lyme. ME/CFS doesn't yield to professionals so well. I think it's the kind of thing you have to figure out for the most part on you own with the help of the internet. Lots of trial and error. Dr D is not going to order medical tests so you can't expect anything there. I guess it comes down to what you're trying to accomplish.
     
  19. Rlman

    Rlman

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    Thanks for the info Dufresne! It's good to know he's heard of Shoemaker, Klinghardt etc. The BEV machine is the one where he takes a sample of saliva, urine, blood to see the biological terrain. It's also called Biological Terrain Analysis. Not really sure how useful it is for diagnosis, more for forecasting future health problems I think. His office did not say he does electrodermal screening, unless that is the MORA machine.
    What machine did he use on you for electrodermalscreening?
    And what is TPN?
    Does he sell Lyme nosodes?
    I'm pretty sure I'm in the ME/CFS camp based on my symptoms, had real encephalitis and IGENEX borrelia lyme test was negative.
    Thanks!
     
  20. Dufresne

    Dufresne almost there...

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    Yes he did the BEV thing with me. Based on this he told me I was in Ketosis, which was probable seeing as I'd been fasting for a day before the appointment. He also told me a few other things that made sense.

    I'm not sure how Dr D deduced my spinal chord was inflamed via basic ED testing. I can't remember exactly what his test entailed, but now that I think of it, it must have included a VEGA machine. It couldn't have just been the yay or nay EDS a lot of practitioners use. And looking at his site now, he does use a VEGA machine.

    To my knowledge he doesn't sell Lyme nosodes. Though this may have changed.

    If you're into homeopathy there's a guy in Mississauga who's good and quite affordable. I think I paid $90 for a VEGA-like test several years ago and an hourlong appointment with an in-depth interview. The machine he was using was called an ElectroScanGram. It didn't tell me anything that would unravel the mystery of ME/CFS or infections I carry, but it gave me a good head to toe assessment of how my body was coping with the disease. It also zeroed in on problems that were just in the nascent stages at that time. Dr Yuriy practices out of an environmental medicine clinic run by Dr Zazula (don't waste your time with that guy). Again he's not going to sort out your ME/CFS, I don't even think he's especially knowledgeable about the disease, but all the remedies he prescribed were bang on for me. He nailed my constitutional within ten minutes. All the other homeopaths I've seen or spoken with have been crap.

    http://www.rulist.com/details.php?g=14&lang=0&c=0&s=160&d=13986

    TPN is Total Parenteral Nutrition. It was something I'd theorized could be helpful for ME/CFS. I don't want to get into a description of it here, but if you're interested, search the forum here with those key words. I started a thread about the idea a few years ago. I should really post something there as I've worked out a lot of the mysteries that I alluded to in that thread.

    Personally I wouldn't spend more money on a new doctor unless there was something specific I was after that only he/she could help me with. I don't know where you're at with you're health adventure and whether or not you should spend money on someone like Dr D. It has been my experience that I usually learn something knew from these real healers. Knowing who the talented ones are from the charlatans can be tricky. I can give Dr D a thumbs up in this regard. However if you already know a whole lot about your condition it may not be worth the money. However of all the healers in Toronto you could learn something new from, he tops the list.
     

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