1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

IACFS: Dr. Byron's Hyde booklet on ME

Discussion in 'General ME/CFS News' started by Boule de feu, Sep 25, 2011.

  1. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    We were fortunate enough to get a copy of Dr. Hyde's booklet at the conference.
    I'm about to read it and see if I could use it for my Dr.'s appointment tomorrow.
    I thought that I could "push" things a little bit and ask my GP to follow the "missed diagnoses" route... at least for a little while.

    I would like to lend him my copy. Would you advise against it?
    Could it play against me?

    P.S. Once I am done with it, I would not mind mailing it to anyone who would like to read it. We could make a list of names and make sure everyone gets a chance to have a look at it. Is this feasible?
     
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,148
    Is it this booklet? http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
     
  3. glenp

    glenp "and this too shall pass"

    Messages:
    753
    Likes:
    16
    Vancouver Canada suburbs
    I think that it would depend on your doctor. My doctor admits he does not know much about this illness and appreciates any information that I give him. I would think that a physician not open to Dr. Hyde's suggestions would be one to stop seeing.

    glen
     
  4. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
  5. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I will tell him that I went to the ICFS conference and got some documentation. I will see what he tells me.
    I'm not done reading the booklet and my brain fog is too severe to be able to make sense of what i'm reading.
    I'm not ready to discuss it with him.
     
  6. Andrew

    Andrew Senior Member

    Messages:
    1,977
    Likes:
    1,267
    Los Angeles, USA
    Once the doctor does all the testing Hyde recommends, what's the treatment?
     
  7. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,148
    From my reading of BH, I haven't found him focus too much on treating M.E. He seems in his writing much more focused on treating the condition if it's not M.E. Of course, spotting a misdiagnosed is useful.
     
  8. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    It would be good to see his latest - at least ruling out "missed diagnoses" (and treating) would be a great guide for Docs whilst research on Retroviruses comes to agreement. Taking parts of his "The Scientific and Clinical etc" to my Consultant Neurologist was what made him agree on the ME diagnosis - he even said "and they think it's viral" whilst their blood tests revealed nothing.

    (Patchy high signal changes in MRI brain scan and weak positive anti smooth muscle antibodies found though - the sort of things amongst many (GI/Glands) he might address or advise on for you and your Doc).
     
  9. justy

    justy Senior Member

    Messages:
    2,733
    Likes:
    3,056
    U.K
    Hi BDF, i think its a rare doctor who will actually read stuff you give them -if you think your doc falls in this camp then i say go for it.
    My (new) GP decided that i hadnt had enough things ruled out and worried i may have been misdiagnosed (im classic CCC and ICC, so i dont think so) to this end i have seen an endocrinologist who is doing CT brian scans, pituitary function etc.
    To my mind it would be just as good if we could get our doctors to do tests to rule M.E in such as SPECT scans or some of Klimas's immune markers for example.

    Even though im in the U.K i would be very keen to read this booklet and would happily pay postage. Perhaps if wew had a list of people who wanted to read it we could do Canada and the States first before sending it to Europe otherwise its crazy having it criss crossing the Atlantic. Let me know what you think of this idea -but if theres no other takers im keen to read it as soon as possible.
    Take care, Justy.x
     
  10. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    There is nothing on treatments in this booklet...
    He explains how to diagnose ME.
     
  11. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I'd wish my doc would find something totally different - we could treat it and that would be the end of it. =-)
     
  12. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    I'm pretty sure mine is also viral. I was sick from November 2005 until March 2006 and I could not get rid of it. My doctor said: "There is a virus in there, and he is way too comfortable to get out!" Six years later... it's still making my life miserable.
     
  13. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Since Enid and you are interested, we could start with both of you.
    I will send it to either one of you and then you could make sure both of you read it.
    We will go from there.

    As for postage, don't worry - I will pay to send it. It's not big enough to worry about that (it can fit in a small brown envelope).
    Maybe everyone could pay postage for the next in line?
     
  14. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Does anyone have an idea in what percentage of cases he finds such a missed diagnosis? And in what percentage of the missed diagnoses people can then be treated successfully? Thanks.
     
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    Sorry to hear Boule de feu - same for me. Could you find any guidance at the marvellous Ottowa Conference to aid persisting problems. I'm pretty certain after many years K de M, Mikovits (et al) are well on the way at least (HGRVs). Have/can you try treatments much spoken of here on PR there seems to be newer and newer ones out. An old friend of many years has been under KdeM (MLV positive) and finding his treatment (GMaf, Antibiotics etc) working - it is tailored to his particular tests/findings though so very individual. It's been about 6 months so far. In the meantime I hope your Doc is doing all the tests recommended (with specialists as necessary).

    At your post No. 12
     
  16. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    You would probably find this info in his new book : Missed diagnosis.
    I think it is available on lulu.com

    http://www.lulu.com/product/paperba...onic-fatigue-syndrome-second-edition/10255089

    I think he said 60% but it could be 40%...
    I can't recall what he said and did not write it down.
     
  17. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Well, I had a very "special" private conversation with Robert Miller who told me that Ampligen saved his life... I would not mind trying that. A lady sitting besides me said that her daughter was taking a mitochondrial cocktail and gave me the name of a CFS doctor. I could ask for an appointment with Dr. Bested of Dr. Hyde.
    Another specialist mention that vassopressin could help for chronic earaches...
    Besides that, I don't know where to go or what to do.

    All my tests are dated, i.e. 5 years. Maybe we should run them again.
     
  18. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    57
    Ottawa, Canada
    Dr. Hyde gave us a second booklet

    I forgot to mention that we also received a copy of "The Cambridge Symposium on M.E."
    However, it is dated (1990) but the info is helpful - considering all of the references being made.
     
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,148
    Yes, I think that's what most people would be inclined to think after reading BH stuff. I find it a bit odd that for an M.E. expert, these days he seems to generally not talk about treating M.E.
     
  20. Dolphin

    Dolphin Senior Member

    Messages:
    6,868
    Likes:
    6,148
    From what I hear BH is quite pricey - high 4-figure/that sort of range. That was for somebody outside Canada so don't know whether different for those in Canada. Also, doesn't seem particularly focused on treating M.E. Those are impressions I've got but perhaps others will say otherwise.
     

See more popular forum discussions.

Share This Page