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He usually does a 3-month follow up and a 6 month one, after that I think it is every 6 months, un less specific problems crop up meantime.
He does do telephone consultations too. But they are very hard to get - you have to book a very long time in advance and he often stands you up anyway.
Hi Athene,
I know DeMeirleir is generally well respected and some patients have reported they have improved with his treatments, but didn't you say a year ago or so that your health deteriorated considerably (a six month crash?) after you had seen him for about a year or so??
d.
Hi Dannybex,
Yes indeed, he did me way more harm than good. It was a two year crash really, as it took a year after stopping his treatment to get back to where I had started.
Based on talking to other patients in his waiting room, I know 1 other who got drastically worse like me, one who made spectacular improvements and about ten who saw no real change either way after periods of 6 months to 2 years. I didn't meet anyone there who had been a patient of his for more than 2 years.
Athene
HIya,
At the time of my first appointment he was all about the intestine and used pulsed antibiotics - what I later found out was exactly the Marshall protocol. He added in probiotics between the antibiotic bursts and a few nutrients - vitamin C, alpha lipoic acid and Omega 3 oil - not exactly rocket science and certainly nothing I couldn't have figured out from reading PR!
Just after my second appointment the news about XMRV broke and he started putting all his patients on antivirals. At first he was very random and used different ones for different patients - guinea pig stuff. Now he is all about GcMAF.
If I am giving the impression that he just jumps onto whatever is the latest bandwagon and buzz in CFS, well, yes, that's what I think...
Hi Athene and everyone else,
sorry to hear that you had a bad time under Dr. De Meirleirs care. Worrying actually, as I have my first appointment with him at the end of November... I was wondering what type of treatment he usually suggests? And what do you think might have caused your relapse? To be honest I only made the appointment because I want to start GcMaf. It seems very expensive but then again I am very desperate!
Am I right in saying that he focus's on the stomach etc.? The little that I know of him made sense for me because my M.E. started after a severe case of Gastroenteritis that left me in hospital for about six weeks. Although I have been on the different diets etc. Leaky Gut/Fermentation etc. but I have found that they have made me much worse over this past year.
Any info you could provide would be greatly appreciated,
Thanks
HIya,
At the time of my first appointment he was all about the intestine and used pulsed antibiotics - what I later found out was exactly the Marshall protocol. He added in probiotics between the antibiotic bursts and a few nutrients - vitamin C, alpha lipoic acid and Omega 3 oil - not exactly rocket science and certainly nothing I couldn't have figured out from reading PR!
Just after my second appointment the news about XMRV broke and he started putting all his patients on antivirals. At first he was very random and used different ones for different patients - guinea pig stuff. Now he is all about GcMAF.
If I am giving the impression that he just jumps onto whatever is the latest bandwagon and buzz in CFS, well, yes, that's what I think...
Helene,
Don't worry about the Marshall Protocol I have been a KDM patient since 1999, and I have never heard about him perscribing the Marshall Protocol/HIV medicines until Athena mentioned it. I do know quite a number of his patients.
He is focused on the gut, or actually focused on the whole CFS picture.
It is a tough condition and as time progresses more is known about it and treatments are being tried out.
I was administered 38 doses of GcMaf and unfortunately it did not do anything to me. But please don't let this discourage you!! There are patients on GcMaf who are doing well.
You need to push yourself and make an extensive list with questions to ask. So do your homework and please don't get too worried!