1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

Calling all KDM Patients

Discussion in 'ME/CFS Doctors' started by garcia, Nov 21, 2010.

  1. garcia

    garcia Aristocrat Extraordinaire

    London, UK
    Hi all,
    am seeing Dr Kenny De Meirleir in the new year. Had a few questions I was wondering if those of you who have seen him could possibly answer:

    1. Does KDM send injections by post? (e.g. nexavir)
    In particular I'm asking about GcMAF. Would he post it to the UK, or would I have to travel to brussels every time I wanted an injection???

    2. Are the gut tests compulsory (lactose/fructose tests)? E.g. if you already avoid those foods anyway, can I save money by not having those tests?

    3. When do you actually get to see him? How much time do you have with him on the initial consult?

    4. Do you see him on day 2 too?

    5. What kind of blood tests does he typically order?

    Many thanks if you can answer any/all of those questions!
  2. maryb

    maryb iherb code TAK122

    Think the fructose and lactose tests are compulsory for all new patients - my consultation was quite short about 15/20 mins - only saw him on the first day. I have scanned a list of my tests which I can try to send to you as an attachment if no-one else replies. Someone else may already have theirs to hand though, which would be easier for you.
  3. Eleneeh


    Hi Garcia!

    I am a patient of KDM. I live in Sweden and he comes to Stockholm once a month, so that's where I see him. I've only met him twice +had one phone consultation. I can't answer all your questions cos the procedure is diffrent when he comes to Sweden (there's no lactose/fructose tests here yet and so on). But some of your questions I can help you with...

    1. KDM collaborates with 2 different pharmacies in Belgium from which you can order your medicines. So there is no need to go to Brussels every time you run out of a medicine or so. Nexavir is shipped from Holland. I am not on GcMAF myself (still awaitening testresults...) but I know of people in Norway who is on it and I know it's beeing shipped to them. However, if you want GcMAF administered intravenously you need to go and get it done in Brussels.

    5. He will probably test C4A, CD14, and CD57 levels. Elastase and perforin (NK cell activity) expression, inflammatory cytokines and proinflammatory cytokines. You'll do the stool analysis. urine test (H2S levels) and "Leaky Gut Test". Depending on your answers during the first consultation, he will test for diffrent viruses, bacterias, perhaps do a mold and zoonosis serology. If you are XMRV+ he will do the "GVDR Polymorphisms".

    Let him know of tests you done before. I know I didn't pay as much as most patients do on their initial testing, cos I had already done food allergies (IgG) testing, hair analysis, free radicals testing and so on.

    Good luck with everything! It's good to hear you are going to see KDM, I'm sure he can offer you a lot of help!!

    Varma hlsningar
  4. filfla4

    filfla4 Senior Member

    Hi Garcia,

    I saw KDM in Brussels for the first time last week. I had an appointment with him on Monday and while it was scheduled to be 15 mins long, it probably took more like 30mins. 15 vials of my blood were taken to send to 5 different labs (two of which are in the States). This list of things I'm being tested for is extremely long....including xmrv by pcr and serology. I did the Hyrdrogen Breath Tests for lactose and fructose, the first on Monday and the second on Tuesday. I also submitted a saliva and stool sample. On the second day there was no plan for me to see KDM however as soon as I arrived at the clinic at 8am I asked if I could have a few minutes with him as I had forgotten to ask him something. This was arranged and he squeezed me in for a few minutes in between things. I'm afraid that's all the info I have for you as I'm new to this too and am expecting my results back within 8 weeks, so I haven't yet started a treatment protocol.
  5. garcia

    garcia Aristocrat Extraordinaire

    London, UK
    Thanks for all the info guys, it was very useful!

    Thanks for the info mary.

    Eleneeh, many thanks for your detailed post. It was most helpful.
    Its good to know that GcMAF can be shipped. That was one of the main things I was worried about. The list of tests you have given is also very useful.

    Thanks too filfla4. It is really good to get everyone's feedback on the KDM experience.

    I know there are more patients seeing KDM after me, so know they will find the answers on this thread useful too.

    Many thanks,
  6. ukme

    ukme Senior Member

    Just a tip for you; KDM is a v busy man of few words unless you engage in conversation yourself so go inprepared with your questions etc or you may find your time with him is quite short.
  7. Frank

    Frank Senior Member

    Kenny has got A LOT of patients, that's why he needs to work this way. There will be more Belgium patients going to him, now that Prof. Maes left the country

See more popular forum discussions.

Share This Page