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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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    Unfortunately, he actually doesn't seem to have much experience with Spect scans. He orders them but doesn't know how to read them or what they actually mean. He is trying to get Mount Sinai, the hospital in Toronto who did mine, to elaborate on the report they did on me. When he was involved in doing them in research it appears to be in the 1990's. I can't find any new info. about ME/CFS and SPECT scans. If anyone knows of any new research into this, please let me know. From what I can see from my own google research, my SPECT scan fits in with Alzheimer's Disease. This is very worrisome for me since my Dad is in severe stage of this awful disease and they now say that it shows up in the brain decades before it actually shows symptoms. When I mentioned this to Dr. Hyde he did his usual and shrugged it off. I got the impression he didn't really know. The neurologist he sent me to " didn't believe SPECT scans offer anything" since not enough research has been done yet so even if you get abnormal results, no one knows what it means. He didn't even look at my results!

    Gamboa
  2. Sparrow

    Sparrow Senior Member

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    I have nothing but good will for anyone who devotes their career to helping ME patients.

    But like all of the specialists out there working on this, I think that each doctor will line up better or worse with what each individual patient is looking for. And he is definitely not the guy to see if you're hoping to try medications or treatment for your symptoms rather than just documenting them. Looking for a possible misdiagnosis, then he's your guy.
    allyb, taniaaust1, Gamboa and 2 others like this.
  3. Gamboa

    Gamboa Senior Member

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    Excellent point.
  4. taniaaust1

    taniaaust1 Senior Member

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    Its definately a case of knowing what you want to choose a doctor for. Sometimes one will need several as one may hate doing paperwork but be okay with treating the symptoms while another dont mind the paperwork, while a third may look to treat the "cause" of the symptoms more. Im under the care of more then one CFS specialists due to that.
  5. Graeme

    Graeme almost there...

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    I remember talking to Dr Hyde about Dr Cheney's ideas back in 2008 and he accused Cheney of seeing through "spectacles" -Cheney's theory focused very much on the heart in those days, and this was after his own struggle with idiopathic cardiomyopathy. I bounced this charge back at him with a playful smile when he said he'd contracted polio as a much younger man -his theory is that of post-viral syndrome: you're damaged and that's basically that, nothing to be done.

    I know he's mostly wrong with his theory.
    dannybex likes this.
  6. Gamboa

    Gamboa Senior Member

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    After all this discussion I am still going to keep seeing Dr. Hyde. It is through him that I am getting in to the dystautonomia clinic in Hamilton for tilt table testing etc. Despite his short comings, he has been able to order a tremendous amount of testing for me that NO other doctor in Ontario would dare attempt to do. Thus the constant battles he has with OHIP and the medical association. He definitely isn't afraid to " step outside the box" and to put his career on the line. I'll be back for tea and cake :)
  7. Kiwi Jack

    Kiwi Jack

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    I would be interested in anyone else's experience with Dr Hyde. In terms of results, have you been cured, or have your symptoms significantly improved? Is he appropriately prompt with follow up, service, deliver on his promises. Or not, and has your experience been neutral or negative?

    I'm not seeking dirt, just trying to make an informed decision. He appears to be very knowledgeable, well published, helpful, genuine, and a real fighter for the CFS and ME community. Or at least that is what he publishes about himself. But I'm also reading stories of disappointments and his fees are significant, and they appear to vary from patient to patient. Again, I'm not interested in dirt. Not everything in life goes the way we'd like, and no one deserves to be measured using a ruler of perfection. And, some folks don't make good patients.

    I'm emerging from a few years of being in the middle of the Lyme Disease controversy which has cost me a tremendous amount of money with zero resolution to my problem, and my health is much worse. A big waste of time and money. Not sure it is, or was ever Lyme. The only thing I know for sure is everybody is still arguing about it while I'm still feeling like crap. It appears CFS or ME or whatever it's called is another controversial diagnosis (or mis diagnosis), and the multitude of camps are dug in deep and not agreeing with each other, just like the Lyme controversy.

    So unfortunately anyone specializing CFS/ME/FM etc is somewhat suspect, simply because of the whole disagreement with almost everything to do with this/these illnesses. So before I pay a (another) big lump of dough upfront to yet another "expert", in this somewhat endless sea of experts. I'd appreciate hearing any feedback. Thanks.
    golden and Wayne like this.
  8. globalpilot

    globalpilot Senior Member

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    I've been to him. He's good in terms of understanding the effects and helping with disability. He , I believe, thinks it is essentially caused by enteroviruses now. He does have a booklet you can get that might help you decide.

    I felt I needed a more well rounded investigation than he could offer - of lyme, viruses, mold, gut and traveled from Ontario Canada (east) to California to see Dr Nathan.

    I really respect Dr Hyde but feel I won't get the proper workup I need from him.

    Regarding the Lyme, I'm so sorry to hear it made you worse. There is a culture test now you can do that might put the controversy to an end. It is offered by Advanced Lyme Labs and costs $600 I believe. Expensive I know but so is long term antibiotic treatment.
    golden and Wayne like this.
  9. Kiwi Jack

    Kiwi Jack

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    Globalpilot, is Adv Labs an ELISA test? If so does it differ from the one done in Canada? I thought the ELISA was the worst possible test for Lyme unless you are tested in the first few weeks of being bitten, then the bacteria changes and possibility of detection drops considrrably. My ELISA was negative.

    I thought Dr H provides the ultimate work up. As in "the only diagnosis of CFS is a missdiagnosis". That's troubling if he's not willing to check absolutely everything and leave no stone unturned or skin fold uninvestigated. I can get ignored by my regular Dr for free. If I'm paying several thousand, I'd expect a complete work up, but more than that, a never give up attitude.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am not Globalpilot but I believe the Adv labs test is PCR. It can be done it Europe for perhaps less. Another good new test that is supposed to be about 90% accurate is the German lab, Infectolab's LTT test:

    http://www.infectolab.de/index.php?id=51&L=1

    If you scroll back in this thread I think you will find that Dr. Hyde does extensive testing but doesn't follow up with treatment himself. I am not his patient but this is what I remember.

    Best wishes,
    Sushi
    golden likes this.
  11. globalpilot

    globalpilot Senior Member

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    The advanced lyme lab is a culture. If you google it you will see it's fairly new and seems like a bit of a breakthrough.

    When I say I needed more than what he offered I was looking specifically for : lyme culture, mold testing, someone who uses GCMAF , viral testing and a couple other things. I went and looked for someone who met my needs.

    Maybe in your case Dr Hyde will provide what you're looking for. I don't think it's fair to say he's not willing to do everything possible. No doctor can do everything.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  13. globalpilot

    globalpilot Senior Member

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    Well, what is meant by 'everything under the sun' ?
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I'm not sure, I haven't researched it that much, he is in a foreign country for me (would they take my insurance?), I am happy with my Dr. But I would imagine he is more thorough than 99% of the other Drs in ANY country, at least that is my impression!

    GG
  15. crisco

    crisco

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    Graeme, do you know if he still feels this way about Cheney's discoveries of cardiomyopathy? I have made a Skype appointment with him for May 8th and have begun to wonder if I'm doing the right thing. I'm too ill to do all the "body-mapping" he wants his patients to do. Do you (or others on this post) know if he will accept that fact, or push me into relapse by insisting on all of these tests?
    One last question: does he ever acknowledge a dx of ME without all his tests being completed? I can do blood work, but not alot else. I think i am in late stage diastolic dysfunction, with very poor cardiac output.
    Thanks for your thoughts
    Christine
  16. Sparrow

    Sparrow Senior Member

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    He will not force you into tests you do not want to do...but he definitely pushes in that direction. It can be frustrating.
  17. KIO

    KIO

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    I think it's always "dangerous" to interpret the results of examinations,
    by non-professionals, without all the necessary competence,, alone, with the search engines...!
    Anyway ...

    Dear Gamboa, :)
    (I'm sorry, I do not know English, I write with automatic translators)
    I'm not inclined to throw out all the new hypothesis, I'm not a person who demonizes vaccines ...
    But I think that this documentary might interest you.
    Unfortunately, the link that I give to you, are in French ... But maybe you, living in Canada, you can understand ..

    Documentary ART:
    Planète Alu
    Documentaire de Bert Ehgartner
    http://www.arte.tv/fr/aluminium-attention-danger/7342282.html
    (I will not say that you can see it on youtube ;) )

    I do not know if anyone has translated into English. But if you search by the names of the professors interviewed, are sufficient results in English.

    Chris Exley
    Professor in Bioinorganic Chemistry
    Honorary Professor, UHI Millennium Institute
    http://www.keele.ac.uk/aluminium/groupmembers/chrisexley/

    Professor Chris Exley talk about the benefits of silicon - 1
    http://www.mamaisonlacommunaute.fr/...p://www.mamaisonlacommunaute.fr/35-index.html

    Professor Chris Exley talk about the benefits of silicon - 2
    http://www.mamaisonlacommunaute.fr/article-silicium-contre-alzheimer-112422009.html


    Professor Romain Gherardi:
    http://www.orpha.net/consor/cgi-bin/Directory_Professionals.php?lng=EN&data_id=3515&MISSING CONTENT=GHERARDI&search=Directory_Professionals_Simple&title=Pr-Romain-GHERARDI


    Conference presse avec Professeur Romain Gherardi:
    (...)J'arrive dans un bâtiment du Parlement Européen devant Michèle Rivasi, députée européenne, André Cicolella, président du Réseau Environnement Santé, et quatre chercheurs, dont le professeur Romain Gherardi, Directeur d'une unité de recherche à l'Inserm et chef de service à l'Hôpital Henri Mondor de Créteil.
    Tous sont d'accord : les sels d'aluminium sont présents à dose assez importante dans les vaccins, en tant qu'adjuvant. Rejetés en bonne partie par l'organisme, il en reste quand même de nombreuses particules qui circulent dans l'organisme, et s'accumulent dans le cerveau chez certaines personnes.
    Les chercheurs ( http://myofasciite.fr/Contenu/Divers/2008_Exley.pdf ) considèrent que cette accumulation pourrait être responsable de plusieurs troubles, notamment la myofasciite à macrophages ( http://myofasciite.fr/ ) une maladie dégénérative provoquant des douleurs articulaires et musculaires et des troubles cognitifs, et le syndrôme de fatigue chronique(...)

    Automatic Translate:

    Press Conference with Professor Romain Gherardi:
    (...) I'll be in a building of the European Parliament in front Michèle Rivasi MEP André Cicolella, president of Environmental Health Network, and four researchers, including Professor Romain Gherardi, director of a research unit at the Inserm and Chief of Service in the Henri Mondor Hospital in Créteil.
    Everyone agrees: the aluminum salts are present in large enough dose vaccines as an adjuvant. Largely rejected by the body, there's still many particles that circulate in the body and accumulate in the brain in some people.
    Researchers (http://myofasciite.fr/Contenu/Divers/2008_Exley.pdf) consider that this accumulation could be responsible for several disorders, including myofasciitis macrophages (http://myofasciite.fr/) a degenerative disease causing joint and muscle pain and cognitive disorders, and chronic fatigue syndrome (...)

    http://www.mamaisonlacommunaute.fr/article-majeure-et-vaccinee-et-malade-112376479.html
    and
    http://www.mamaisonlacommunaute.fr/article-vaccins-particules-d-espoir-115766651.html


    a warm greeting :)
  18. KIO

    KIO

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    Ooops!:oops:
    Gamboa, I'm sorry! I've seen now in your profile that you are "Pathologist Assistant" ..
    What I wrote above: "I think it's always "dangerous" to interpret the results of examinations,
    by non-professionals, without all the necessary competence,, alone, with the search engines...!"

    considering that I have not written for you ...
    :)
  19. Graeme

    Graeme almost there...

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    Hi Christine.

    I believe Dr Hyde is sticking to his guns that ME is the result of enterovirus infection and that there is nothing to be done about it. I believe he makes his diagnosis of ME/CFS based on CAT or MRI scans that show abnormalities in the brain stem. Without this I don't see him making a diagnosis. I can't imagine the point of communicating with him if you're unable to submit to his tests.

    I watched a presentation of his from last year where he spoke about XMRV as a fraud perpetrated on ME/CFS patients by 'a Dr Lombardi and the WPI.' He painted Lombardi out to be a total charlatan and I think this really betrayed his ignorance of developments in the ME/CFS world. When I was talking with him about Dr Cheney years ago it was apparent he wasn't up to date on his work. I believe that when talking with a purported ME/CFS specialist about the work of Drs Cheney, Chia, Klimas, Shoemaker, Peterson, etc, and you know more than the specialist, you've a problem. This was my experience with Dr Hyde.

    If you believe you have low cardiac output I strongly suggest getting a hold of Dr Cheney's Fairfax talk. I don't know how this can be procured nowadays so you might just want to try what he recommends for this problem. I've found heart glandulars (a far cheaper and more accessible form of his CSF's) to be incredibly effective on this front. You can purchase various heart glandulars online, almost always porcine and bovine. Both work but I would urge you to go a step further and locate a butcher that can get you a bison heart. I did this last year and was amazed at how much more potent the bison heart was. I cut the thing up into 2 ounce servings and I eat one raw every couple of months. It might sound a bit gross, I was queasy at first, but you get used to it.

    Also, in my experience, you'll want to protect your adrenals if your cardiac output is that low. By this I really mean your ability to vasoconstrict, which is primarily the job of noradrenalin. If you run low on this stuff things get ugly. I've found a direct correlation with low noradrenalin to my propensity to sensitize to everything I eat. This also complicates taking drugs and supplements. It's a nightmare in itself I hope you don't have to go through. My vasopressin is now fully engaged in this battle to constrict blood vessels at 50 to 100 times the normal level found in the blood. My recommendations would be to avoid all vasodilators. Absolutely no garlic, careful with the magnesium supplementation and no hot baths or saunas. I understand these are often good for our condition under different circumstances but not when you're really low on noradrenalin. Megadose with vitamin B5. You can find 250-1000 mg doses of this stuff. What I do is take a B100 complex along with a dose of 1000-2000 mg of B5, and I do this every couple of weeks a couple times a day. However I assume you're not yet having the problems I am with sensitization and can dose on a daily basis so you might want do this with the B's. The bison heart you really don't have to use any more often than once a month or so. And whatever you do stay away from adrenal glandulars.

    Take care,
    Graeme
  20. rookie

    rookie

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    Hi Gamboa,
    You mentioned that you've been diagnosed in Ottawa even before meeting Dr. Hyed. I live in Ottawa, and my family doctor knows little about CFS. Can you give any hints to whom he may refer me for diagnosis?

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