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My visits with Dr. Byron Hyde

Discussion in 'ME/CFS Doctors' started by Gamboa, Mar 31, 2012.

  1. Gamboa

    Gamboa Senior Member

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    Hello everyone,

    I am very fortunate to have recently become a patient of Dr. Hyde. My first visit was last Monday and already things are moving along quickly.

    I have been off work with ME/CFS for the last 5 years but was struggling with the illness for many years prior to that. I first wrote to Dr. Hyde 4 years ago but did not hear back. Last September I was at the ME/CFS conference here in Ottawa and met Dr. Hyde and his staff. I told them my desire to become a patient and they said to resend an application. Once again I heard nothing....until, that is, 2 weeks ago. I got a call from the office asking if I would like to be a patient. The next thing I knew I had a 4 hour appointment with Dr. Hyde for the following Monday!! The office assistant jokingly said they are slow to respond to requests but once they contact you, they move very fast. No kidding.

    I live in Ottawa so it is only a 10 minute drive to the office. Once there, Dr. Hyde methodically went through a checklist of medical problems and issues that I could have. During my 4 hours there, in which to my delight I was served tea and cake, Dr. Hyde went through my medical history bit by bit filling in a chart that he then subsequently sent me by email. It was nice to have a record of exactly what he is writing down and to have all the testing that he is ordering documented in one place. As he gets results he will fill this chart in until he has a complete scan of all the body systems.

    After that first visit I have the following tests to do: 24 hour Holter monitor , Cardiopulmonary stress test,
    spinal X-rays, Echocardiogram, EEG, bone scan, and a multitude of blood tests for autoimmune, rheumatoid, and clotting illnesses. He also requested the actual DVD of an MRI that I had done 3 years ago to have it reviewed. The amazing thing is that he was able to get me in to have these tests done all within a month, unheard of here in Canada with our current state of health care unless you have some life threatening illness.

    I have my next appointment on April 4th, another marathon session of 3 hours. I can't wait to see what tests are ordered next.

    How much is this costing, I hear you all asking? Dr. Hydes fee, which covers his services for the next 18 months roughly, is $3000. Because I live in Ontario, thankfully, much of the testing is covered by OHIP, the provincial health insurance plan that all residents have. Some of the more obscure blood tests have some additional fees but I'm hoping my husbands work health plan will cover that. I actually don't care if I have to pay for some of the tests since it will be worth it to find out what is wrong with me. I am not searching for a cure, although that would be great of course, but just more information about my illness.

    I'll let you know how my next appointment goes. I just hope he has more of that delicious cake!

    Gamboa
     
    taniaaust1, Persimmon, ahimsa and 3 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Congratulations, Gamboa,

    That all sounds fantastic. I am so pleased for you. I was reading about that mega jackpot that is going in the US and thinking how I if I were to win something like that I could spread the money out between CFS research and helping individual patients who had no money for care. Looks like you won the jackpot!

    P.S. wouldn't it be great if a CFS patient won the something like 310 million that will be given out?

    Sushi
     
    ggingues likes this.
  3. SOC

    SOC Senior Member

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    Great news, Gamboa! Please keep us posted on how you are doing and how your appts go with Dr Hyde.
     
    ggingues likes this.
  4. Enid

    Enid Senior Member

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    Great news Gamboa - oh we could only have him and his extensive knowledge over decades here in the UK.
     
    ggingues likes this.
  5. globalpilot

    globalpilot Senior Member

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    That's awesome Gamboa. I met him in February for a consult. He is just excellent. He told me to try the oxymatrine for my enterovirus first and if that doesn't work, to come back. He really is 1 in a million.
     
  6. Boule de feu

    Boule de feu Senior Member

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    I'm so happy you are doing this!

    Thank you so much for taking the time to write this down.
    I will follow your progress, for sure! :)

    I was wondering what you did to get in. You said you sent an application and some papers?
    Both times i've tried I went through his website. Is this why I did not get an answer?
     
  7. Helene

    Helene

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    This is wonderful news. I wish you all the very best. I am also a Canadian. I saw two other physicians in Ottawa but things were not productive with them, and I had to go to the US for help. My understanding of how Dr. Hyde works, at least based on readings of some years ago, is that if he finds an issue in a particular area of the body, he sends patients to specialists in this area of expertise. Is this still his method? I would really like to know. Please do keep us posted.
    Thank you.
     
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Does he do SPECT scans?

    Congrats and I hope he helps you significantly!!

    GG
     
  9. Gamboa

    Gamboa Senior Member

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    I can't remember exactly what I did the first time but I think I sent an email first. They sent back a form letter describing fees and stating that Dr. Hyde only takes on about 20 patients a year. I filled in a questionnaire and then did not hear from them again. When I spoke to Dr. Hyde and his staff at the conference last September they said that they had a flood in the office and that a lot of things were lost and to reapply. I did this and then didn't hear anything until last week. The office assistant, who I think is fairly new, said she "came across my email" and was wondering if I was still interested in becoming a patient.

    I will ask Dr. Hyde how he selects patients when I see him this week. I suspect that he is looking for people who have been ill for a while and have seen many doctors without getting a clear diagnosis. I have been sent to at least 10 doctors for consults and various tests and have been given the diagnosis of ME/CFS. Dr. Hyde believes that people either have true ME or have some other undiagnosed or misdiagnosed illness that has been lumped under the umbrella term CFS. I think the more probable pathologies you have the better chance you have of seeing him.

    I'll get more info for you.
     
  10. Gamboa

    Gamboa Senior Member

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    Hi Helene,

    Yes this is exactly what he does.

    Who did you see in the States and was it helpful?
     
  11. Gamboa

    Gamboa Senior Member

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    Yes he does do SPECT scans. That is one of the things I am most interested in having done. He wants them done a particular way so I might have to go to Mount Sinai in Toronto since the SPECT here in Ottawa might not be good enough. I don't mind since I actually enjoy going to Toronto ( I saw Dr. Bested there for 3 visits at the Women's College Hospital CFS clinic).

    My MRI from 3 years ago shows UBO's (unidentified bright objects) among other things. I suffer from almost daily headaches and cognitive difficulties along with fatigue so brain imaging is definitely one of the things that Dr. Hyde will be investigating. He has also requested the actual DVD of the old MRI to have it re-read since the written report was very poorly done.

    By the way, sorry I have written 3 responses instead of combing them in one. I haven't figured out how to do that yet.
     
  12. Googsta

    Googsta Doing Well

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    I am so pleased for you Gamboa! He sounds lovely.
    You mentioned he is particular in the way the SPECT scans are done, would you mind elaborating some more on that if you can?
    I see my Neurologist today & hope he will order a SPECT for me, but as he does not recognise M.E/CFS I need all the help I can get ;p
     
  13. Enid

    Enid Senior Member

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    Thanks for sharing all this Gamboa (Dr Hyde being so knowledgeable). Having had brain MRI unidentified "high spots" too his opinion will be revealing. I hope for you and he will diagnose and aid you.
     
  14. Gamboa

    Gamboa Senior Member

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    I just read this today, after my second visit with Dr. Hyde. I'll look into this for you.

    Regarding my second visit, it was again long, 4 hours! And again, tea and cake were served.:D

    I came away with an appointment for an MRI, more blood work (all infectious disease stuff this time) and best of all, a visit to Cornell University in Ithaca to have a 2-day cardiopulmonary stress test done by Dr. Betsy Keller. She is now doing the same testing as that done by the Pacific Fatigue Lab in California. She gave an excellent presentation at the IACFS/ME conference here in Ottawa last fall about her research. I'll try to find a link for this. Too tired at the moment.

    Also, a gastric biopsy that I had done last fall to rule out Celiac Disease is being sent to California for enteroviral testing.

    Now to lie down again: it's been an exhausting day. :In bed:
     
  15. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Gamboa, very interesting. Please continue to post on this.
     
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I had done this about 2 years ago, so I might be able to answer any questions? PM me if necessary, not good on keeping up on threads. FYI

    GG
     
    Boule de feu likes this.
  17. Googsta

    Googsta Doing Well

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    That's great news Gamboa, yes make sure you get some rest ;)

    Unfortunately my Neurologist say's Neuro's in general do not think much of SPECT scans so he won't be ordering me one :(
     
  18. Boule de feu

    Boule de feu Senior Member

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    Too bad you won't discuss this here, GG. I am very interested in this since I might have a consultation with Dr. Hyde, too.
     
  19. Buster

    Buster

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    Hi Gamboa, I PM'd you, but I'll post here just in case:
    I read with great interest that you are seeing Dr. Hyde. I'm just in the process on trying to get in to see him, they have emailed me and advised of the fees etc. I was wondering how things are going with your visits?

    I take it that his process is to rule out illness other than ME?
    But if it is ME, can he help at all? Any idea of the percentage of patients who see him, that he helps improve?
    I've got a lot of questions actually, is there any way I could as you a few more?

    Kind Regards, Buster
     
  20. Dufresne

    Dufresne almost there...

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    I saw him back in 2009. He orders a lot of tests and has the connections to get you in quick, which is a good thing in Canada. I hear he's been able to help people in court, but he seemed completely uninterested in trying to ease my suffering -perhaps that's a bit harsh. Still, if you read his book you'll notice he doesn't really suggest much in the way of therapy. And I found him rather closed to other people's ideas about the disease.

    Symptomatic relief? Benzodiazepines? Antibiotics? Hydrocortisone? Nada. Wouldn't go for it.
     
    LisaCanada likes this.

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