DR Byron Hyde Ottawa, Canada - Anyone been?

Discussion in 'Fibromyalgia Main Forum' started by shanwill, Mar 8, 2006.

  1. shanwill

    shanwill Member

    Hello,
    Just seeing if anyone has been to this doctor. He supposedly is the leading CFS/ME specialist in Canada. I live about an 9 hour drive from him, not to mention there is fees involved too. But it's cheaper than FFC and he seems to be the key doctor.

    Any advice on him. He works at the nightgale clinic in Ottawa, Ontario.
    Thx!
  2. Hope678

    Hope678 New Member

    Hi Shan,
    I go to FCC in ATlanta, but take imunovir/isoprinosine which is the anti-viral Dr. Hyde has done so much research on. It has helped me immensely. It supposedly does two things: has an antiviral effect and also balances the immune system to help us feel better and be less susceptible to infection. It is only available through Canada. My US Doc writes a prescription and I send it to Canada and they ship me my 6 month supply.
    Dr. Hyde has done many good things for our population and you would be in good hands.
  3. Aeronsmom

    Aeronsmom New Member

    A friend of mine goes to him all the time..she says he is great and he dx her with her illness when no one else could,I would love to see him but he charges $1500 for the time time he sees you, but he is great.
    Ann
    [This Message was Edited on 03/08/2006]
  4. shanwill

    shanwill Member

    Thanks for the info. I am so tempted to go as his reputation is so high.
    I have to decide between him in Ottawa, Dr Bested in Toronto or the FFC in Detroit. They will all cost money but the Canadian ones far cheaper, just not sure which is best. Am so sick of going TO doctors - so want to choose wisely and get this sorted.....like everyone else I suppose.
    Will keep updated on what happens though. And pls give more feedback.
    Thanks guys!
  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I thought he was just in research now.

    I've seen his old partner, another big leader in the research field, Dr. Anil Jain. Dr. Jain has a small general practise in Ottawa and diagnoses ME/MCS, but he doesn't treat it longterm. A diagnoses from him has alot of weight though, because he sits on every board from Nightingale to Health Canada, to the CDC. His name also appears on the official diagnostic for CFS/FM for Ontario where CFS gets its own disability code and is officially listed as a neurological disease. I posted this very detailed report of our FULL syndrome awhile back.


    Jeanne
  6. lucky

    lucky New Member

    I have seen Dr. Hyde the past year. I went through a lot of testing and seeing specialists but am not any further ahead or feeling better for that matter than when I started seeing him. He is certainly checking for all kinds of things to rule out other problems. His tests are mostly geared to the heart and brain functions. In my case we found out that there are a lot of problems with my brain function. However, right now I am having this looked after also by a neurologist who Dr. Hyde referred me to. MRI and brain scans show abnormalities, but there were no medications prescribed.
    Dr. Hyde is certainly the best doctor in Canada to diagnose CFS and is well known in CFS circles.
    I had such big hopes when I started seeing him, but with all the drives to Ottawa and Montreal to get tested, I am not any further ahead and am more fatigued etc. than ever.
    If the outcome of my visit to the neurologist on Tuesday is successful, then it was all worth it. And seeing him once, he certainly knows CFS and its symptoms.
    Of course, it gives you some peace of mind when you see a doctor who you know is an expert of an illness and understands what you are going through, and above all will try to find the reason for the illness by referring you to specialists and getting lots of special tests done.

    Best wishes, Lucky
  7. shanwill

    shanwill Member

    Thanks for all the messages.
    Lucky, am curious how things pan out for you....keep me posted. I'm wondering if it's worth driving (more accurately someone else driving since I can't drive on my own that far!) for the Doc to just DX me and then refer me to someone else. HOwever, if he does link you up to the right specialist who can cure the underlying illness than I would be game.

    Good luck!
  8. berrytired

    berrytired New Member

    I'm in Ontario also...that's sad that he would charge so much...sheesh...my doctor had everything done for me...MRI...lung xrays..every blood test possible...it still comes up with nothing...
  9. lucky

    lucky New Member

    Many of the tests which were done by Dr. Hyde also were not showing anything, i.e. thyroid etc. and even on one blood test it showed that my immune system was o.k. Hard to believe, since I suffer from chronic sinusitis. What surprised me that on every visit the doctor told me why I am ill and on my last one, he could not put his finger on anything because he ruled out that I had Encephalitis since I never had a head injury. However, he believes that according to the MRI that I have brain athrophy which is causing a lot of problems. I am not so sure because everybody getting older has a some athrophy. I hope the neurologist can be of more help here looking at a CD of the MRI. Meanwhile, with all the care I had a mini stroke in October and was hospitalized and to my surprise I read on the copy of the MRI that there were ischemic changes in my brain. But why did nobody do something about it, that is my question.

    Dr. Hyde is a firm believer that the primary cause of disability in this disease process is an acquired central nervous system (CNS)dysfunction, e.g. motor, cognitive, sensory and emotional dysfunction.
    I had two Neuro-Spect scans which indicated that the blood flow to the brain, i.e. cortex and both frontal lobes are considerably reduced. The medications I was on at that time helped with the dysfunction. Since the stroke I am not allowed to take Ritalin for a while, which was a great help. I hope the neurologist is putting me on something to replace it.

    So, it is up to the individual and the expectations one has to see Dr. Hyde and pay his fee. In all fairness, he found a lot of things wrong with me, however, up to now there is no big benefit except that I know my brain is the cause of many or all the symptoms of CFS. I put some hope on the neurologist, let's wait and see.
    Take care and best wishes, Lucky
  10. lucky

    lucky New Member

    A lot of my blood tests also showed nothing was wrong except the Neuro-Spect scans and the MRI and some heart tests.
    The difference is that Dr. Hyde knows excactly what to get done in regards to tests, scans, MRI's, etc. He also arranges for a Sleep Survey which for example I did not do too well in and will be tested again for mainly the apneas which showed up and might even have been the cause for the mini stroke I had in October according to the neurologist. I never even imagined that I suffer from apnea.
    It is more for peace of mind I guess to see a specialist and hope that we get proper help. However, this did not really materialize in my case yet, except that I know now that I have problems with blood flow to the brain, etc. My hope is the neurologist Dr. Hyde referred me to. He certainly knew what he was talking about when I saw him a couple of months ago.
    It is the old story, there is not much out there yet to give us back our lives except certain medications which ease some of the symptoms but have side effects most of the time.
    Best regards, Lucky
  11. bren22

    bren22 New Member

    Hi Lucky

    I am going to see Dr. Hyde in Novemeber. I am currently trying to complete all of the tests. Did you have to do the tests on a very fast timetable? Did you find that this process was exhausting? Did Dr. Hyde give you any indication of why so many tests in so little time? Were you satisfied with Dr. Hyde?

    Any info would be appreciated.

    Thanks
    Bren
  12. lucky

    lucky New Member

    I am trying to answer your questions re Dr. Hyde. My tests at the time were all spread out over months, however, there were plenty of them. So, it was a little exhausting. In regards if I was happy with the doctor, I have to say NO. After my last posting about his tests etc., I decided not to see the doctor anymore. I was not happy and very disappointed as well.

    I hope your appointment with him will be a good and successful one, and I wish you all the best.

    Lucky

    Best wishes, Lucky
    [This Message was Edited on 10/17/2006]
    [This Message was Edited on 10/17/2006]
  13. bren22

    bren22 New Member

    Hi Lucky

    I know that you said that you were not happy with Dr. Hyde. Would you mind expanding on that? I have been sick for at least 11 years and am primarily housebound. I have been doing bloodwork and tests since the beginning of Oct. I have spaced them out a bit as it was scheduled for 6 weeks. Some of the tests got rescheduled due to equipment problems and then conflicted with others. You know how that is. My problem is that I am so exhausted normally and I don't do anything. Now I am expected to go out every week or so. When I talked to Dr. Hyde (who I find very difficult to get in touch with - let alone book an appointment with) he said that other patients just get it done. And that the tests are not invasive so what is so hard or tiring about that? I want to get the results but I am terrified that the energy I am expending will lead to an extreme deterioration in my already fragile condition. What about the long term consequences of all of this?

    Is this what you found?

    Looking for confirmation that I am not insane.

    Bren