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ME/CFS: A disease at war with itself
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App with KDM

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by harrycat, Oct 17, 2011.

  1. harrycat

    harrycat

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    Hello I wondered how you go about getting an appointment with Dr De Meirleir and what type of fees I'd be looking at? Thanks.
     
  2. aquariusgirl

    aquariusgirl Senior Member

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    off the top of my head.. I think a consult is 70 Euros. Labs can and do run 1000s of euros.
     
  3. LauraX

    LauraX

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    Appointment with prof. Kenny De Meirleir (KDM)

    You can make appointment with Prof. Kenny De Meirleir (KDM)
    by calling to Hummunitas in Belgium, Brussels or by email.
    All communication in English or French.

    Tel.: (0032) 2 266 87 40
    Fax: (0032) 2 266 87 50

    E-post: info@ehmb.be

    Address:
    Himmunitas
    De Tyraslaan 111
    1120 Neder-Over-Heembeek
    Belgium
     
  4. Athene

    Athene ihateticks.me

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    His initial work up costs about 5000 euros.
    His consult fees are 70 euros first appointment and 50 thereafter.
    He often prescribes supplements and things from suppliers in which he has a commercial interest (not stated clearly) and these cost a huge amount. (However they are good quality stuff I believe).
     
    Alea Ishikawa likes this.
  5. gu3vara

    gu3vara Senior Member

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    How many times do you have to visit him normally? I could afford going once or twice, not more than that.
     
  6. Athene

    Athene ihateticks.me

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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.
     
  7. ukme

    ukme Senior Member

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    I dont know about 5000, in our case we were paying about half that. The consults, whether over the phone or in person can be abit hard going as he is a man of few words. HTH
     
  8. dannybex

    dannybex Senior Member

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    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.
     
  9. Clodomir

    Clodomir In hibernation mood

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    Hi,


    If you want an appointement, you have to call, beter dan E-mail. And only in the morning from 9 to 12.
    Price: 70 then 50
    If you not coming from Belgium, he try to regroup consultation ( with the nutritionist if needed) and analysis.

    Have a good day

    Clodomir
     
  10. Athene

    Athene ihateticks.me

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    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
     
    Alea Ishikawa likes this.
  11. klimt

    klimt

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    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
     
  12. Athene

    Athene ihateticks.me

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    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...
     
  13. cansado

    cansado

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    Regarding the Marshall Protocol: Did you have to eliminate exogenous sources of vitamin D both dietary and sunshine? Which ABX did he prescribe you?

    Which AVR's against XMRV did he prescribe all his patients?

    Please let me know. Thank you.

    C.

     
  14. Athene

    Athene ihateticks.me

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    Hi cansado,

    Yes, I had to avoid Vitamin D and go round in giant sun hats and smother myself in sun block till I looked like a geisha.
    The antibiotics were clarithromycin, I am afraid I cannot remember the other one. But he presribed different ones to every patient I spoke to.

    The antiviral he prescribed me and several other patients was nexavir, but he prescribed at least 2 others which other patients mentioned and I am afraid I cannot remember the name. I know that they were HIV drugs.

    I jsut re-read an email from one of his patients who had been doing very well but ended up bedridden when he started her on GcMaf injections. She continued emailing me for a while but eventually stopped and I do still worry about her. She was the one who had been doing fantastically well on the Marshall treatment.
     
  15. Clodomir

    Clodomir In hibernation mood

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    Hi,

    I am ill since november 2010. I started in april with Nexavir (very expensive) and vitamin complex (if you want more information, send me a mail). Then in mid august, I start GcMaf. The treatment (Nexavir + GcMaf + B12+ ...) is quite expensive: for me, it cost 20 euros/day. Don't forget the price of the analysis (2000 euros).
    What I can say is that Nexavir is a big help for me: less pain, more energy: I can have a conversation, follow my children's homework, etc.... But I still can't work, drive, do some shopping, etc....
    I don't know if GcMaf is working on me: I didn't notice big changes for the moment, but I am in the beginning of the treatment.
    I am really sorry for Athene if it doesn't work with KDM. The only thing I can say, is that my sister is still alive thanks to KDM. She is his patient since nearly 12 years. When she met him the first time, she was 36 kg, now she is 42kg. She is still ill, she went to lots of doctors, and no one cured her. She have bad days and good also.

    Have a good day

    Clodomir
     
  16. Helene

    Helene

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    This is worrisome for me too. I wanted help with my gut. The hardest part I found was that he spent only a few minutes with me. He said he basis everything on the test results. And as someone here said, he is a man of few words.

    I have had horrific reactions to some protocols, and on two occasions became very ill for a long time. These were strong herbal treatments. So, if I understand you, you are saying that the meds. he gave you made you very ill and you crashed. Would that be accurate.

    I cannot live without sunshine. I am sick when it is dark and cloudy, only the sun helps me. So, now I am worried.

    I have heard that he has helped some people and they are very happy with him and believe they have progressed. Today I saw a you tube clip about GcMaf and it was a patient of Dr. Enlander's and the patient was very pleased and doing exceptionally well.

    Did you do Gcmaf with him?
     
  17. cansado

    cansado

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    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!
     
  18. Helene

    Helene

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    Thanks Cansado


    Thanks Cansado for this encouragement. Lots has been tried: HGH, hormones, immunovir, blood pressure pills, herbs of all sorts, supplements, drains, drops, rubs, swishes. Things help a little but nothing has really addressed the core problem, whatever that is.

    And with the gut in very bad shape--pain after every meal, it was suggested to me to go see Dr. K de M.

    How are you doing Cansado?

    Best wishes, Helene
     
  19. Athene

    Athene ihateticks.me

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    Hi Helene,

    Yes, I got much worse and crashed in a major way as a result of my KDM treatment.
    BUT
    He diagnosed fructose malabsorption, which changed my life. When I went to him I had such severe diarrhoea I was close to being bowel incontinent and eliminating fructose got that fully under control. The first two sessions of antibiotics also got my intestinal inflammation much improved. It was all the other symptoms that got worse.
    So yes, If you have terrible guts, I do think it is very likely he can really help you. He does a food allergy panel which is also great, not every food was correct but it seems to be the best one existing and it was also a great help to me.
    The area I am not so convinced about it the detailed poop testing. He gets all your bacteria analysed and prescribes probiotics based on what you are lacking. It seemed so impressive at the time!!! BUT it is terribly haphazard and in reality, what actually makes the difference is taking tons of probiotics, any kind at all. The "ideal balance" of bacteria is different in every person, and an unknown area of science and so I think spending hundreds of pounds to find out what you've got in your gut is not really worth the money.

    I eventually figured out that nexavir was a major contrinutor to my crash because it contins a huge amount of phenol, to which I have an extreme intolerance. I had told KDM about my chemical intolerances and specifically mention phenols, but he doesn't take proper notes during appointments so he presumably forgot that. When I mentioned it to him afterwards, he clearly was not interested.

    I didn't try GcMaf so I cannot make any comment on that. What I can say is that we are all different, and his treatments do work for some, as we've already seen, in some cases fantastically.
    The other good reason to go to him is that his initial workup is very informative, I found out a huge amount of detail about the state of my immune system and various infections I had, my abnormal cortisol level, metal poisoning etc.
    The one weak point is the testing for chronic infections like Lyme disease, chlamydia pneumonia and others which can cause pretty much all the symptoms of CFS. He uses an ordinary lab n Belgium for this which is not sensitive enough - when I was re-tested in Germany by a more specialised lab these tests came up strongly positive (plus others). However, my detailed immune profiling tests ordered by KDM (at Redlabs) were what led me to this, as everything pointed to me having tertiary Lyme disease. So ultimately, my KDM experience was an essential stepping stone in the long journey that led me to discovering all the infections I have and getting the current treatment which really seems to be helping.
     
  20. Helene

    Helene

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    Thanks Athene for your precise and detailed post. Much appreciated here! The stool test is of interest to me. From what you say, this sort of testing is still haphazard. Reading Dr. Myhill I learned that Bacteroides cannot be replaced in the gut with any probiotic. She suggests the only solution is Fecal transplant. Bacteroides according to her are not violated by antibiotic use. She says there is a microbial ecology profile available from Metametrix. It's hard to know what test to believe in. Particularly, if no bacteroides show up and one must consider Fecal Transplant.

    As for the Nexavir, yes, folks have said that it really helped them. The worst situation is when one is very chemically sensitive, then treatment protocols are not doable. This has been my experience.

    However, you do say that now you are please with your treatment plan. What substances are your taking that are helping you, if I may ask?

    As for the Lyme testing, I had the igenex do it and they came up with borderline. But now there is a new Borrelia test from Researched Nutritionals, I understand.

    Best regards, Helene
     

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