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
I guess you'll be on a low fructose/fructans etc diet now. let us know how you get on!