new to the chat and asking about info of Dr. DeMeirleir

Discussion in 'Fibromyalgia Main Forum' started by ruti, May 10, 2008.

  1. ruti

    ruti Member

    I am living with Fibromialia for many years now. I am feeling a lot better after many years of a search for diagnoses and treatments.

    I am very interested in Dr. DeMeierleir's research and I am considering going to Belgium for a diagnosis with him. He has a two day routine of testing.
    Does any one has an experience with his diagnoses and treatments?
    The Red lub in the U.S is also associated with his work. Does anyone has an experience with the tests?
    He also does a lot of general tests I can do in my regular health clinic such as effort test and other heart tests and sensitivity to Fructose or Lactose - not clear if it is possible to do only the unique tests
  2. SpiroSpero

    SpiroSpero New Member

    Prof De Meirleir does most of his tests through Redlabs but also through University of Brussels and other laboratories. You can do a fructose breath test everywhere but be sure that they test you for 3 hours and don't stop earlier.
    I have an appointment with him in 2 weeks. His practise is 10 minutes (taxi) away from the airport and I really admire his knowledge and the fact that he still teaches at Brussels University.
    In my case the culprit has not been found yet. I want to do all kind of tests related to hypercoagulation and reduced cardiac output next time. If you live in the US I would not fly to Belgium you have better doctors there. In Europe however he is the only, I repeat, the only Professor who attended the CFS Conference in Florida last year and one of the few persons who know sth. about CFS. Europe is about 10 years behind. Bring up CFS here and the doctor will bring up psychosomatic.
  3. pluis

    pluis New Member

    I live in the US, and compared to the Doctors here, I like De Meirleir much more. Today I am like a zombie, and cannot write much about it. And I will be out of town the next week. But when I am back I am happy to give you some info about him. Just remind me!
    [This Message was Edited on 05/10/2008]
  4. ruti

    ruti Member

    Thanks to both of you. please give more details. From what I have read there is no one in the world that sees and knows so many Fibromialia and CFS like him. His theory about the short RNAse is remarkable and explains all the different symptoms.
    I luve in Israel and I am considering flyining to Belgium for the tests.
    I am concerened that they are very expensive and some of them are tests you can do everywhere. It is not clear if you can just take a few of them.
    Are you living in Belgium?
    Do you know more of the tests he would do for you and the costs?
    I would love to hear more about your experience going to his clinic.
    I think it takes a few weeks to get the results.
    Were you able to talk to him or someone in his clinic?
    Tanks Ruti
  5. SpiroSpero

    SpiroSpero New Member

    You always talk to him in person. The first tests (really a lot of tests) are expensive. They will cost you about 2000 Euros but if they are too expensive tell him and he will sort some of them out.
    RNase, Nested PCR's for all kind of viruses, IgA's and IgM's for bacteria, NKs, T-cells etc. cost money.
    I don't know if it is possible to send Redlabs blood samples from Israel because of the distance.
    I can recommend De Meirleir but I have to add that theory as fantastic as it sounds is only theory. He has not found the cure for CFS yet but he has great knowledge about medication.

    Maybe Pluis can tell you more about him when he's back.
  6. wldhrt

    wldhrt New Member

    I have first hand knowledge of Dr. De Meirleir as I have done some professional research on his protocols, and in fact have spoken to him and e-mailed him regarding treatment. Unlike a lot of so-called CFS experts, De Meirleir looks at any and everything that could be causing symptoms, including infectious agents,(viral and bacterial), hormonal imbalance, heavy metal toxicity, leaky gut, etc. He has done important work with the RNase-L theory, as well as the Immunobilan testing (gut bacteria that "leaks" into the blood stream) His treatment plans are specific for each patient.
    I'm pretty sure that Medicare will cover most Redlabs testing, but I'm not sure about private insurance; you could have your own physician order the tests and have it sent to De Meirleir. He's pretty flexible about this kind of stuff and is sensitive to cost concerns from patients.
  7. ladybugmandy

    ladybugmandy Member

    the last i heard, demeirleir was into immunobilan testing and antibiotic therapy. i do not think he gives antivirals for as long as some doctors do here.

    i do greatly admire his and dr. suhadolnik's work on RNase L.

    i hear spain has some very good CFS doctors too.

    i have never seen demeirleir but thought i would throw in my 2 cents.

    best of luck!!!
  8. karinaxx

    karinaxx New Member

    Both my son and myself suffer from ME/CFS and we went to see Dr.Meirleir last year.
    Much has been said here already.
    I think he is one of the top in the world when it comes to diagnosis.
    I did not follow all his recommendation, since it involves ABX ( i have written about this topic on this board), it can worsen some ME/CFS patients condition.

    The elimination of fructose sugar (tested pos. for fructose malabsorption) has improved our muscle weakness almost immediately and my sons lifelong IBS is gone.

    Overall i think for diagnosis he is the best; for treatment, i think there are other options you can consider, once you have done all the testing. My health insurance paid, after i send them Dr.Meirleirs Resume, which is, by the way, impressive.

    We are not completely healed, but improved through a combination of alternative meds, changes in the environment and elimination of certain products etc.

    hope that helps you


    p.s. If you do go to see him, write down all your symptoms and your own health history, in clear and chronological order. He has little time, his waiting room is always full, and he really appreciated this; he even thanked me and said it made it a lot easier for him.
    He is a a real nice.

    [This Message was Edited on 05/12/2008]
    [This Message was Edited on 05/12/2008]
  9. karinaxx

    karinaxx New Member

  10. ruti

    ruti Member

    can you send me Dr,DeMeirleir's resume? I might be able tgo convince my insurence.
    Thanks Ruti