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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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dr lewis in melbourne

Discussion in 'ME/CFS Doctors' started by knackers323, Feb 21, 2011.

  1. athomeinRwanda

    athomeinRwanda

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    Thanks to Zuriel for the warning about Dr Lewis' recommended dietician - I had been on the verge of making an appointment. However I looked at all the dietician's listed with Shepherd Works - none specializes in ME/CFS nor appears to know about leaky gut. This is disappointing. I was hoping to find someone like Christine Tobback, who works closely with Dr Kenny de Meirleir. It seems clear to me that a dietician with knowledge of treating ME is an essential element in the healing process - especially for some of us who have a hard time processing all the dietary information on our own - I just can't seem to get my head around all the information out there.
     
  2. athomeinRwanda

    athomeinRwanda

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    Re: my second visit at the "CFS Discovery" clinic

    For anyone who's interested in the "CFS Discovery" clinic in Donvale, Melbourne:

    On my first visit to the clinic I met with the nurse who gave me the results of
    the just completed H2S (hydrogen sulphide) test, which showed that I have a
    "leaky gut". She sent me off to be tested for lactose and fructose
    malabsorption, and also to spend a month eating things I usually avoid (such as
    wheat) so I could be checked for food intolerances.

    I tested positive for fructose malabsorption, and also arranged (through my own
    GP) to get tested for coeliac disease (no results yet). On my second visit to
    the clinic the nurse then carried out further food intolerance tests, all of
    which were negative.

    During the second visit I also spent over an hour with one of the new doctors.
    He went through a detailed medical history and a thorough physical exam,
    checking for things such as sensitivity to touch at the various trigger points
    that other doctors never check for. There was also the "poor man's tilt table
    test" for blood pressure and pulse. The doctor used the Canadian Diagnostic
    Criteria. He was friendly and professional, and answered all my questions in
    detail. Like many others I've wondered if I really have ME, or whether I have a
    "missed diagnosis", and I asked the doctor about this - he explained that I meet
    all the Canadian guidelines for ME. Since I've also recently had additional
    tests done through an infectious diseases specialist (because I became sick
    while working in Africa), all of which were negative, I'm now about as certain
    as one can be that I have ME and not something else.

    The clinic is continuing with further tests - the glucose test, a 24hr urine
    test, a stool test, and others (I apologise for my lack of scientific knowledge
    to describe these more accurately). My next appointment with the doctor is at
    the end of June, when I'll have additional information and will find out what
    the next step in their process is.

    I'm happy with the approach used at the clinic and feel I'm being treated as
    well as possible. Everyone there is professional and takes the disease
    seriously. It is not cheap, and the Medicare rebate is very small. However I
    feel fortunate that this clinic exists. I'll keep you updated in the next few
    months when I have more to report.

    Feel free to ask questions, and I'll do my best to answer.

    Nicky
     
  3. filfla4

    filfla4 Senior Member

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    Hi Nicola,

    I'm so glad that you're getting the right attention from your new doctor in Melbourne. About Christing Tobback (I'm an absolute fan of hers!) is it possible to do it long-distance, perhaps via Skype if you can't identify a nutritionist who specialises in ME?

    Bea
    x
     
  4. anne_likes_red

    anne_likes_red Senior Member

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    Tony, thanks so much.
    And thanks for the fructose malabsorption info you've provided, and links etc in older posts. It's all complex....but interesting!

    Nicky, thanks for sharing your experience. I don't know how I'd eat things I usually avoid for a month because the reason avoid them is that they cause problems! Glad to hear you didn't have additional intolerances at least :) I guess you'll be on a low fructose/fructans etc diet now. let us know how you get on!
    So pleased for you that you're getting thorough care. Really appreciate the details.
    Anne.
     

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