Anyone here have Kenny de Meleir experience of treatment? Ruti?

Discussion in 'Fibromyalgia Main Forum' started by rachel76, Jun 2, 2009.

  1. rachel76

    rachel76 New Member

    Has anyone here been to Dr Kenny de Meleir in Belgium for treatment?
    There is one woman here called "Ruti" who I can not get in contact with. She went to him and I read her experience in the archives. I would have liked to hear more from her.

    Is there anybody else who had treatment here?

    It seems that his treatment is standard supplents that Dr Teitlebaum uses but maybe I am wrong?

    Has he actually helped anyone with serious digestive problems and M.E/CFS

    His treatment protocol is on this website:
    http://www.nutritional-healing.com.au/content/articles-content.php?heading=Lecture%20summary%20of%20November%202007%20talk%20on%20CFS%20by%20Dr.%20Kenny%20De%20Meirleir

    Please if anyone has been at De Meirleir let me know

    Also is it possible to contact anyone on the board through a "my messages" sort of way?[This Message was Edited on 06/04/2009]
    [This Message was Edited on 06/04/2009]
  2. rachel76

    rachel76 New Member

  3. karinaxx

    karinaxx New Member

    Both my son and I are diagnosed by Dr. Meirleir in 2007. I was diagnosed in 2005 already by another doc.
    I did not expect from Dr. Meirleir a treatment which will cure us! I went to him to get a recognized Diagnosis for my son and myself. That said, he still helped especially my son with a simple test for Fructose Malabsorbtion.
    My son has had all his life problems with intense stomach aches and landed two times in the emergency and was hospitalized. We have been to god knows how many docs and heard the whole rap of IBS and so forth.
    Dr. Meirleir diagnosed my son with Fructose Malabsorbtion. In one week of cutting out all fructose sugar he had no stomach problems any more and until today he had no problems with his stomach again.

    I don’t believe that Dr.Meirleier has the miracle treatment for ME/CFS and I don’t agree with some of his treatments which include ABX. Mainly because I researched this topic extensively and came to the conclusion that ABX is causing in a big percentage of ME/CFS/Ms suffers a worsening of the condition.
    But other than that I believe Dr.Meirleir has gained over the last twenty years a very good oversight and is a great Diagnostician. He covers the whole ground and I am sure he helped a great many sufferers.

    I hope that helps
    Karinaxx
  4. karinaxx

    karinaxx New Member

    Both my son and I are diagnosed by Dr. Meirleir in 2007. I was diagnosed in 2005 already by another doc.
    I did not expect from Dr. Meirleir a treatment which will cure us! I went to him to get a recognized Diagnosis for my son and myself. That said, he still helped especially my son with a simple test for Fructose Malabsorbtion.
    My son has had all his life problems with intense stomach aches and landed two times in the emergency and was hospitalized. We have been to god knows how many docs and heard the whole rap of IBS and so forth.
    Dr. Meirleir diagnosed my son with Fructose Malabsorbtion. In one week of cutting out all fructose sugar he had no stomach problems any more and until today he had no problems with his stomach again.

    I don’t believe that Dr.Meirleier has the miracle treatment for ME/CFS and I don’t agree with some of his treatments which include ABX. Mainly because I researched this topic extensively and came to the conclusion that ABX is causing in a big percentage of ME/CFS/Ms suffers a worsening of the condition.
    But other than that I believe Dr.Meirleir has gained over the last twenty years a very good oversight and is a great Diagnostician. He covers the whole ground and I am sure he helped a great many sufferers.

    I hope that helps
    Karinaxx
  5. consuegra

    consuegra New Member

    I met a young man from Germany recently who was under the treatment of de Meirleir. In ten months he has made progress in his CFS/ME. Sometimes he makes contributions to this board. Maybe he will chime in.

    There will be more information coming out about his treatment of Norwegian severe CFS patients after a conference in Norway on June 12th.

    Chris
  6. SpiroSpero

    SpiroSpero New Member

    Hi,

    Prof. De Meirleir knows a lot about diagnostics. Really a lot! He runs the latest tests as well as all other tests on his patients depending on what symptoms they have. If you have CFS there is no doubt that De Meirleir will find something.

    He checks your blood for bacteria which are related to leaky gut.
    He checks for fructose malabsorption.
    He can check for viruses from stomach biopsies.
    He has excellent contacts to all kind of professors in Brussels. He is still lecturing at Univeristy of Brussels.
    He checks for all viruses (EBV, HHV-6, HHV-7 etc.)
    He checks for hormones.
    He checks for interleukins.
    He checks for antioxidant capacity.
    He can check for NK function.
    He checks for all kind of blood values.

    His treatment is ALWAYS based on the test results. He does NOT have a special protocol which I find very positive since we all are different and have different symptoms.

    For IBS he prescribes probiotics, antibiotics and a diet based on allergy test
    For viruses he prescribes Valcyte and when you can't afford it (like in my case), Zelitrex (Valtrex). + Isoprinosine, Zadaxin etc. he knows about everything!
    He is one of the few doctors who has access to Nexavir (Dr Cheney uses it).
    He prescribes Armour Thyroid as well as Cortef and all other hormones when needed.


    I hope so much that he is onto something but unfortunately he has no general cure for CFS.

    He is a good doctor in my eyes but CFS is just an awful and very complicated illness.

    I'm a patient of him and I'm from Germany but I'm not the person consuegra mentioned.

    Hugs[This Message was Edited on 06/04/2009]
  7. znewby

    znewby Member

    More on ME Think Tank

    ESME European Society for ME post@esme-eu.com

    Scientific Think Tank for Mystery Disease

    Experts Launch Think Tank for Mystery Disease

    Ten leading scientists in Europe have formed a Think
    Tank for ME and will hold their first meeting on the
    13th of June. They want to initiate an effective
    research effort to find the secret behind the mystery
    disease that cripples an increasing number of lives.


    Myalgic Encephalomyelitis, often referred to as
    Chronic Fatigue Syndrome (CFS), is a disease which
    affects at least one million individuals in the US, and
    an even greater number in Europe. Despite the large
    number of people affected, there is a lack of serious
    large-scale research initiatives focused on the
    disease. The number of patients is rapidly increasing
    but healthcare personnel lack knowledge about
    existing research and possible treatments.


    Last year's winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."

    Montagnier, one of the discoverers of the HIV-virus,
    is a supporter of the Think Tank, but is unable to
    join the first meeting due to his demanding
    schedule.



    Treatable Disease

    Ten internationally recognized scientists, many of
    them prominent leaders in their respective fields of
    research, have decided to do something about it.
    They have come together in a Think Tank to promote
    cooperation among scientists from various disciplines
    and to stimulate intense focus on innovative and
    creative research.

    The first meeting is set in Stavanger, Norway on
    the 13th of June.


    "There are more than 5000 research papers which
    show that ME has an organic basis with
    abnormalities in the immune, nervous and
    gastrointestinal systems and that it is influenced by
    genetic and environmental factors," states Professor
    Kenny De Meirleir of Belgium. "Despite these
    findings, it has been close to impossible to initiate
    large-scale research to verify these facts and
    observations. We will never be able to treat ME properly if we do not initiate this type of research."


    Using new biotechnological techniques, much of the
    underlying pathophysiology of the disease has been
    unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a
    huge drain on the economy, as the estimated
    socio-economic costs for Europe are estimated to be
    ?20 billion annually.

    Educate Professionals

    An important part of the Think Tank's mission is to
    spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients' quality of life to levels lower than that of cancer, MS, HIV and lupus.

    Professor Ola Didrik Saugstad of Norway states,
    "There is a total lack of knowledge and
    understanding about this disease in the healthcare
    system. We wish to use our knowledge to educate
    and train doctors, therapists and other healthcare
    personnel so they can better understand how to
    manage an ME-patient."

    New in ME

    The Think Tank meetings are the brainchild of a new
    organization, European Society for ME (ESME). This
    society will focus on organizing research and
    educating professionals in the field of ME.

    "Until now ME organizations have been patient-based
    and only focused on the needs of the patients, so
    this is something completely new and unique. We
    are a group of professionals who want to stimulate
    new research in the field of ME and to help doctors
    and healthcare personnel to stay informed about the
    latest developments in diagnosing and treating
    ME-patients," says ESME board member Mrs.
    Catherine Miller-Duhen.

    Press Conference

    The first Think Tank meeting will be held in
    Stavanger, Norway on the 13th of June. This will be
    immediately followed by a press conference where
    the specialists will be available for comments and
    interviews.

    On Friday the 12th of June, a conference will be held
    to train healthcare personnel in the diagnosis and
    treatment of ME-patients.

    Press conference: Saturday 13th of June, 4 pm, Press
    room, Clarion Hotel Stavanger, Stavanger, Norway.
    To register for the press conference and ensure
    receipt of a press packet, please send an email to
    Rebecca Hansen at: icerebel62@hotmail.com


  8. Bluebottle

    Bluebottle New Member

    There is a summary of his 2007 lecture here:

    http://www.nutritional-healing.com.au/content/articles-content.php?heading=Lecture%20summary%20of%20November%202007%20talk%20on%20CFS%20by%20Dr.%20Kenny%20De%20Meirleir
  9. ruti

    ruti Member

    Hi Rachel

    Sorry I haven't seen your post until now - this is Ruti.

    I did go to Belgium and did the diagnostic testing with Prof. De Meirler -
    I am very impressed by his vast knowledge and very inclusive testings.
    I described them in detail - you can do a search on the name Ruti and
    will see it. If you want tel me and I would leave my personal email
    so you can talk to me more privately.

    The testing were expensive. You might want to so some of the testing
    in your regular helth system.
    The main things that helped me were breath test for Fructose and for mild (lactose) - whech I did in my regular systm (in a hospital)
    and I came with severe intolerence to milk and a mild one to fructose -
    eliminating milk altogether and lowering fructose helped very much with my disbiosis and bad feelings in my stomack.
    He found an overgrowth of bacteria in my gut (small intense?)
    and an ameabic parasit - I got antibiotics and another medication for
    the bug.
    He also stressed what I knew but he highlighed it that I have a low immune system (low igg iga) _ you can test that in your regular clinic
    with electroforesis of proteins -
    I was approved to get gammaglobolins IV's - although they might stop it
    after a few months since I don't have severe enough infections andit is not risk free (and very expensive).
    A stool test to a lab in the US diagnosed the gut problems (which have not been diagnosed by my regular labs here).
    So overall I am very pleased with De Meierler help,
    I am having some difficulties continuing treatments from a distance - I am not able to send new blood tests to their labs and it is not clear I can do that.
    I am feeling better already *and I didn't go to him when I was at my worst - I did many tratments before that helped me)

    Take care Ruti