Do Dr De Meirleir's methods work?

Discussion in 'Fibromyalgia Main Forum' started by englishbob78, Jan 8, 2010.

  1. englishbob78

    englishbob78 New Member

    Hi, I've had CFS for about 6 months and want to know if it ever gets better.

    Here are a few of my symptoms:
    Tired and weak all the time (on a good day I can walk around the block)
    Achey muscles
    Brain fog/Unable to concentrate on reading/playing music etc
    Total loss of appetite
    Oversleeping/unrefreshing sleep

    I was admitted to psychiatric hospital in september of last year as my symptoms were really bad and I had become suicidal: I was spending much of the day in bed and was having difficulty standing. Thankfully after a couple of months almost bed-ridden the aches in my legs allieviated a bit and I was able to move around a bit more. Now that I look back I can see that it was the tiredness and total loss of energy that caused my depression and not vice versa as the doctors (psychiatric) maintained. Through consequent research I have found out that CFS is still considered a psycho/social condition in the NHS in the UK. I ended up staying four months in hospital not really knowing what was wrong and hoping anti-depressants would sort me out. Needless to say they didn't and I am still suffering the above symptoms.

    I've been reading lately about Dr De Merleir's approach to CFS. From what I can see he seems to have had some good success. At least he looks at it as a biological condition! I'd be interested in hearing from anyone who has had contact with him or his methods. Also, I've been reading about testing for the XMRV virus which has been linked to cfs. If anyone has any info about testing in Europe I would like to hear from you.

    Good luck fellow sufferers!
  2. ruti

    ruti Member

    If you live in the U.K and can effort it or have an indurence that can help you I recommand you very much to go to Belgium and consult with Prof. Demerlier. For sure he will find some things that can be treated (bacteria, viruses. immune system)
    He is very knowlagble and test for many things. I hear that he also test for XMRV lately.
    You really need a major change to get healthy. Please post if you go there and what are the results.
    I was amazed that after getting his diagnosis and treatment I found more help in my country by going to different doctors. He recommanded I start IGIV (gamma globulines IV's) and I was approved and started doing that. The doctors there sent me to more doctors and I am cheching directions again such as maybe getting madicationfor the fabromialgia and checking gastro, allergies and more.
    You have gone already through very tough times - you need help quickly!!
    Take care Ruti
  3. Sceptical

    Sceptical New Member


    Kenny does not possess the key to our recovery (who does?) but can provide you a significant help. Ask for an appointment and book at least two nights in Brussels. Exam and lab tests are not always on the same day and you also might need several days to buy your meds in advance for three months. I suggest you booking night at Holiday Inn City Center which is somewhat more expensive but that is downtown and way more comfortable than HI Expo (his recommendation) which is a dirty and rundown.

    It is fairly easy to improve your medical condition to a certain level of functioning. Recovery is however something else.

  4. lela7

    lela7 New Member

    Hi englishbob78

    I can't help with info on Dr. Meirlier's work but the site I have provided (if you haven't accessed it already) is very informative. From research on this organisations site , who recognise ME as a biological condition(and question the diagnosis of CFS as being a diagnosis) I found information on what not to do so as not to prolong the condition and cause irreparable damage and also information on tests which can be done to establish damage done to the brain which causes many of the symptoms. It discusses recovery period from the illness for different people. CFS is discussed in some detail as to why it is a misdiagnosis and to my mind well worth the read. Lots of clinical information I'm sure you will be able to relate too. Hope you don't mind me responding to you with this as I think it is very important information I wish I had early on in the course of my diagnosis of CFS which may have prevented me still having it 14 years later.

    Wishing you good health

    Kind regards
  5. karinaxx

    karinaxx New Member

    I can recommend Dr.K.Meirleir whole hearted for a proper diagnosis!

    He really checks well, but if you don’t have health insurance, I would tell him. The tests are expensive!
    The information about staying two nights and so forth is good information.

    When it comes to certain treatments, I don’t agree with Dr.K Meirleier in everything and I think there is where you need to make your own decision, based on a lot of information which you have to still acquire. That is not an easy thing to do, with so much conflicting information on the net and sometimes no other way than trial and error will give you the answers.

    I would stay away from ABX (Antibiotics) treatments, unless you absolutely have to you.
    As I researched and experienced over the years, ABX can cause great damage in ME/CFS sufferers. (There is a long post from me, with lots of info. in my files somewhere, search Adverse Reaction to ABX)

    (I treat with natural Antiviral and have improved a lot, though never recovered!)


  6. englishbob78

    englishbob78 New Member

    Thanks Adam, that's useful info. When you say you think you can only get back a certain level of functioning what do you mean? I'm hoping to be able to play sports and read again. Do you think that's possible?
    Best regards
  7. simonedb

    simonedb Member

    hey lela, say if you are better why are you interested in spect etc? It is so confusing to me to figure out root cause as it seems theoretically I could have any or all of the issues, could be viral w/heart issue and oxygen that cheney discusses; could be brain damage from accidents or chemical abuse; could be spinal related like chiari and cervical stenosis; hormones could have caused damage when on the pill years ago cus led to early g.b. problems when fit and on and hard to know where to put energy.What do you think of the viral approach? i think Cheney might say thats the link that seals the fate when one of the other variables present, tips one over edge to not handle normal wear and tear as well or something.
    oh and which website are you referring to in post above?

    and karina what antivirals helped you and how would you say it helped?
    [This Message was Edited on 01/09/2010]
  8. lela7

    lela7 New Member is the site I was referring to.

    Still have illness after 14 years but I am much better than I was. It is so confusing even for the specialist to find the root cause of it. Lots of researchers are working on it and you are aware they have discovered a virus XMRV that MAY be causing the problem. Best to leave them to work it out in my opinion as we have enough to deal with just trying make sure we are getting the best possible assistance to improve our symptoms hence our quality of life. Although I do like to speculate.

    Yes you are right, it can be multiple conditions and or the effects of combinations of conditions we may have giving us our symptoms. Or one condition causing other multiple symptoms. It is important to eliminate all the conditions that have the same symptoms which may be treatable and this will take some time in testing. The site I referred to earlier does speak of tests which can be done to establish if it is ME as opposed to a diagnosis of Chronic Fatigue Syndrome which a lot of illness fall under the umbrella of this name. This site address has a 'Symptom comparison lists of some of the illnesses most commonly misdiagnosed as CFS'. These need to be eliminated as being the cause of our symptoms.

    I remember (now that's always a good sign :)) about people being treated for depression with drugs and it making no difference when you have our condition and I have always said I can see how people develop depression from having our condition because of the effect it has on our quality of life and the prolonged suffering it causes as opposed to the depression being caused by our condition physiologically. I hope that makes sense. I think that was what you meant by what you were saying.

    I have thought for many years there is a viral link and that the virus has mutated so as to not be detected by our immune system so that it can live as long as possible in us it's host. These days I feel that I, at least, am genetically predisposed like many others to either a particular virus or a particular virus mutating in order to remain undetectable by our immune system. With this predisposition and in my case the "other variables present" being: recovering from Post Viral Fatigue caused by Q Fever, stress from harassment and victimisation at work then followed by seven years of court cases I ended up defending myself (mega stress), having a doctor in the early stages tell me stress from dealing with my court case long term wouldn't cause me any physical problems and that the symptoms I was suffering from was psychological and would be short term and that in order to alleviate my symptoms I needed to exercise more (mind you I was already a very physically active person)which I did and was the worse thing I could ever have done. The combination of these is what I believe tipped me over the edge. Oohh sorry, maybe you'd have been best not to ask LOL.

    I can relate to your difficulty with reading/playing music. I play a little bit of acoustic guitar.
    I have recovered enough to start learning to play bass, and sing at the same time (new songs and ones I already knew and music) not an easy task if you understand what I mean. Previously I had trouble just singing, which I love so much. I still have days where I can't practise very much or at all, but most days I can at the moment. What instrument do you play?

    I do recall having seen information somewhere of sports persons who have recovered from what they called CFS so don't give up hope. You are not alone with this, we are all in this together. Believe it or not there is so much to learn from having our condition, it is like a whole new world so please don't give up, this is an opportunity to open up to many things we were unaware of previously. If it ends up meaning having to take a new path in life then this will be your opportunity to take up the challenge.

    Wishing you well
  9. englishbob78

    englishbob78 New Member

    Hi Ruti, was wondering how long you had to wait to be seen by Kenny? If anyone else has an answer to this please post.
  10. Sceptical

    Sceptical New Member

    No reason for you to give up anything. Kenny is an excellent prof I think. We all are in a huge medical experiment which sucks because most of the treatments backfire. However, Kenny is very conservative what his treatments are concerned. He does not prescribe hormones (as opposed to American docs) which is good especially if you look at the fact that we do not even know the etiology (origin) of this disease. My guidelines for Kenny are as follows:

    -book an appointments in advance for consultation and lab tests which might not be on the same day

    -Be prepared to have some cash (70,/eur for consultation, cca 150,- for fructose and lactose tests, stool tests, etc. You do not however have to pay the most expensive test at the scene (REDLABS) and that is good.

    -Write a short list of your complaints. Focus on your problems like fatigue, fogy brain, etc. Do not forget you have 10 minutes.

    -he has (REDLABS) an excellent stool test

    - If you book a night at Holiday Inn City Center (this is a must) you`ll find a pharmacy around the corner (Pharmacy Rousseau). If you smile they will even send you your meds when you are out of them. They even send meds to me to Hungary which is really out of map. Always be familiar with your meds and give the pharmacy specifics like b12 (from Sterop) 10 mg not 1 mg, etc.

    --take the train from the airport in Brussels and get off at Brussels Nord (Gare du midi metro station) (I guess the 3rd 4th station) There you can take the metro until Louise and walk to the hotel. From the hotel use metro lines until Heizel metro station. If you go up from the metro you will see a rundown holiday inn (never use) from which call a taxi cab. Tell the driver Military Hospital because they do not know tyraslaan where Kenny is. You can walk from the military hospital. just a couple of minutes. If you like it take something from your family with you (I do not find anything).

    -After the first appointment he will not tell you anything about the next steps. He however will send you your detailed tests results and the proposed treatment in 6-9 weeks.

    I was unable to sit, stand, read, work out in the gym any more hereinafter referred to as a piece of junk. I am still sick but can read, work (although not where I wanted) and work out in the gym three times a week. Still not happy with it but for now and as compared to others it is not bad. I am still tired but no more exhausted and sleep a lot. No one in the gym even assumes I am sick. They think I am just very slow. Avoid aerobic exercizes like running. Bench press, inclined bench, etc are allowed (when your medical condition improves, couple of moths). Fitness is good because it is anaerobic.

    should you need any more help with meds and stuff (where to buy, etc) just let me know.

    Take care,

    [This Message was Edited on 01/10/2010]
  11. ruti

    ruti Member

    I answered yesterday to both of you and from some reason I don't see my responses now. Strange.

    It took a few months of wait to make an appointment.

    It is hard to remember everything in order to talk to him. He also has a detailed questioner and questining.
    What I did that really helped was writing everything in advance and gave him the document. He takes the fike to think about it.
    He really doesnt say much until the test results arrive. Time is very limited so you need to be very focused on how you ask and respond.
  12. ruti

    ruti Member

    I see where my note are - see my responses also on the other thred I started long ago and someone brout it back on January 8. I answered your questions there as well

  13. ruti

    ruti Member

    I suggest you to do the breath tests for fructose and for lactose in your health system - it is usually done in a hospital. Also effort test for heart and ecco test for heart and lung capacity in effort - to do all these at your regular health system (some you can do even after coming back from Belgium)

    As much as I am worried about taking antibiotics and distebing the good flora condition I was happy to know there is someting I can do to get myself better and that it was bacteria in my gut and not viruses that are much harder to treat.
    By the way the regular doctors here including the gastro doctors don't believe at all in overgrowth of bacteria in the gut - they think everyone has bacteria and it should not be treated.
    I can say that I am doing better since I took the antibiotics and the anti ameaba medication (the Alinia).
    So I advice to go with an open mind and to see what can you discover about your health that will give you insights on how to improve your it.
    I agree very much with the previous woman who answered here that you need to research everything and decide what direcctions to go alwys.

    Good luk Ruti
  14. ruti

    ruti Member

    Hi Adam. Can you tell what are the major things Prof. Demeirler found for you and was it helpful. What did you do to start feeling better?

    Did you go back to belgium or did you do the tests again?
    I am hesitating to do the tests again because of the costs - I will not be able to get reambarced again from my insurence.

    Thanks Ruti

  15. englishbob78

    englishbob78 New Member

    That's really useful info. I'm going to try and make an appointment to see him asap. I'm sure i'll be in touch with you again to pick your brains about meds etc.
    All the best
  16. Sceptical

    Sceptical New Member


    I was put on Nexavir 2cc a day, VSL3 twice a day followed by Gabbroral (antibiotics), b12 IM twice per week, liposomal glutathione 1 teaspoon every morning, quercetine 3x1, plus some med for inflamed gut lining (I do not remember exactly, it contained 300 pcs).I loved Nexavir. If you have acces to that from the USA you can discuss it with Kenny.

    Improvement was obvious in 6 months but I had been improved further for several months. I have reached a plateau now. I work full time, work out in the Gym, etc but I still have health issues. I am not healthy to say the least (although improvement is robust) but this treatment was able to break causation to some degree.

    It is important to watch your symptoms. I realized that VSL3 makes me fogy brain. It stimulates immunity and I was also put on Nexavir. I decreased VSL3 to the following schedule>1,1,0,1,1,0 instead of 2,2,2,2,2. I do not take antibiotics anymore (I was put on them for an extended period of time) bc they cause flareups (anxiety, fatigue) in my case.

    I go back every 6 months bc I cannot afford to travel more frequently and bc I have reach plateau and it does not make any sense to show up more frequently to monitor my medical condition. During the first year of treatment I was there four times a year. However, sometime it is advisable to schedule an appointment in four(not three months) because lab tests do not arrive in time from Belgian labs.

    I do not have myself retested every time because there is no change in my medical condition and cannot afford.

    Finally, I call the secretary who gives me an appointment right away. Of course there is a waiting list (couple of weeks only)

    [This Message was Edited on 01/10/2010]
    [This Message was Edited on 01/10/2010]
    [This Message was Edited on 01/10/2010]
  17. ruti

    ruti Member

    the phone number in Prof. Demeirler's office is +32- 2-2668740

    email is

    Many times they don't answer (especially on Monday - Tuesday)
    Many times there is an answering voice in Flemmish
    Emails are answered some of the times so you need to be very patient and try to call at different times
  18. Sceptical

    Sceptical New Member

    I would definitely call (no emails). They speak English.
  19. ruti

    ruti Member

    Thanks Adam.
    This is wonderful you are feeling better and could be helped.
    Are you taking the B12 shots? are these with a huge amount in them (1gr!!)?
  20. Sceptical

    Sceptical New Member

    No one uses 1 gr. I give myself 2x10mg every week (Mo, Thu). This is so high that you cannot even buy it everywhere. That is more than enough. My nitric oxid serum level decreased from 19 (reference value: less than 12) to 9 and has remained there. I cannot even tolerate more bc it is stimulating. Even if you use twice 10 mg your cobalamine level remains highly elevated for days.

    Improvement takes time and sometimes you cannot see it from the side effects. Get adequate sleep. 10 mg remeron has helped me a lot. However, if you aren`t as overstimulated as I am, you might feel drowsy all day. I don`t. If you are a female patient be aware that it causes weight gain. I am happy about it. It is like a dopping in my case. Beyond 10 mg it is more stimulating and works as an antidepressant which is not desirable (antidepressants make my mood shit which is otherwise good).

    [This Message was Edited on 01/10/2010]

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