Discussion in 'ME/CFS Doctors' started by allyann, Nov 3, 2011.
Hmm i just came acroos thos thread
Im on the waiting list (for 5-6 months now I think) and am keen for anecdotes anyone can offer either in the thread or by PM . Im doubtful about food intolerances but would like to try anything like GcMAF,stem cell,vitamin injections for methlyation, meds for POTS, LDN
Regarding food intolerances, Prof De Meirleir finds that about half of ME/CFS patients have fructose malabsorption and a smaller group lactose intolerance (20%). Some have a problem with casein, a protein in dairy. While not everyone has a problem with foods, with these relatively high percentages it's a good idea to rule them out.
Unfortunately GcMAF cannot be imported into Australia. There are very few doctors who are using stem cells in this country. I've heard of one in Sydney and one in Melbourne but I don't know who they are...
Thanks end. I am sorry you have not had a good experience.
Any of you guys have any follow up on how you went at the clinic?
Griffith university on the gold coast are going to open a clinic soon. The info I got back from them is they are going to have gp's with an interest in cfs and use local specialists when needed. Too early to know if they are going to try anything out of the box??
Many of his patients have Lyme Disease,
he uses GcMAF yoghurt
You can get some more details if you join Lyme Victoria group on face book
Im off the waiting list (as of July last year) had massive amounts of testing that has been fruitful in finding problems (I want that!! , something to attack) .
It is too early to tell how much improvement I will have or too expect improvement, beta blocker letting me stand for longer periods of time is the only concrete improvement so far .
very reassuring manner from the doctor Im seeing there and their obvious knowledge of the condition is reassuring
@EtherSpin hi have you made any progress with the cfs clinic?
not yet Knackers except that as above the beta blocker is helping me stand up longer , I've had some bad depressive episodes at first treated via fluoxetine/prozac but a second dip despite the prozac and with the doc noting viruses in the family everytime I get an episode I've been put on low dose naltrexone.
separately to that my main treatments are being on the beta blocker, slow release potassium and a regime of anti biotics followed by probiotics to remove and replace with good stuff all the nasties identified in my bioscreen faecal test.
im still at exactly the same energy level as when I commenced I reckon but Im pretty hopeful i will eventually see benefits as the doctors both seem so knowledgable and sincere
a lot of Dons patients have been diagnosed with Lyme Disease.
Facebook Lyme Victoria
Hows that clinic coming along? Has anyone been there yet?
I think the clinic has moved to Griffiths in Brisbane
I recieved an email recently and it said there will be news soon. It was suppose to be april but i guess everything takes time. To be quite honest i wish i just had access to some of their testing etc unless they were going to let people use some experiemental drugs or something. But knowing how conservative medicine here is i cant see that happening yet?
Thanks, yeah Id last heard it was April, that is why i started to wonder if anyone had been there yet. Im very interested too in what testing they'd be doing there. Im thinking about getting GP to try to contact them (seeing everyone is useless in this state).
Now that Ive receiving IVs at times, maybe it would be possible for me to get one so at least I could travel somewhere in our country to see a ME specialist.
That's what Ive been thinking, They probably will be being watched and have their hands as one would say tied as far as experimental treatment goes. Ive only had like half of the recommended ME tests thou, Im sure I still have much missed.
I have heard they are inundated with phone calls, I am not surprised
The last email I had said they were expecting to open in June
I am interested in the testing they offer at CFS Discovery Clinic and have sent you a PM.
@Sammy what are you referring to here?
You can also try a Google Site Search
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