My visit to Prof. De Meirleir in Belgium

Discussion in 'Fibromyalgia Main Forum' started by ruti, Apr 8, 2009.

  1. ruti

    ruti Member

    My visit to Prof. De Meirleir in Belgium – an important step in my recovery

    In October I flew to Belgium to consult with Prof. De Meirleir. I read about his work through this site and I am a great admirer of his vast knowledge and a wide and holistic diagnoses.

    Many people from many countries are coming to see him. I am posting this note only now since it took a while until I got the results and diagnosis and until I was able to start treatment.

    I am fighting many years in FM/ME – many steps I have done were successful in my recovery and I am doing much better over the years. I had Candida that I recovered from and many other problems.

    I was very impressed by the thorough, wide range of questioning and testing he had performed on me (blood and stool). The tests were sent to a few labs in Belgium and in the U.S

    He checked for viruses (such as EBS, and many more), bacteria, measures of the immune system including his special tests for FM regarding short RNase.
    Allergies to food. Heart and lung tests (argumetria, lung capacity in effort).

    He discovered new things for me that I can treat and some not so new ones that I am not sure I can treat.

    I did 2 breath tests that were positive – Lactose sensitivity (sensitivity to milk) and Fructose intolerance – which is really hard to avoid – I can give advice on that now that I am an expert on it.
    This in addition to the fact I am on a gluten free diet makes my diet now very challenging!!!

    The elimination of milk is especially helpful to me now and I became even more sensitive after avoiding it – If it touch milk products I get sick. (Milk enzems – Lactase – I don't find helpful)

    He reaffirmed that my immune system is completely exhausted and that I don't produce new antibodies (very scary!!!). He explains FM – the immune system was "turned on" and never "turned off" so it is exhausted and not functioning well.

    His idea is to try to clean as much as possible the problems that inhibit the immune system and try to boost it.

    He found an ameba (it is the 3rd one I am fighting – 3 different names!!!).
    This time it is a Blastositis. It needed an expensive medication that I had to get a special permission to import from outside the country. (Alinia)

    Then he found overgrowth of bacteria in my gut / intestines and I need antibiotics for.

    He also recommended I take Gamaglobulines – which is a blood product of antibodies from many people (very expensive and it holds only for one month so it is an endless process – I don't know if I will be able to get it yet from the medical system). It is also not clean from problems - some people get allergic reactions to it. It should be safe and it is tested a lot but it is a blood product and rarely it can have a virus that is not tested for.

    I am surviving the medications now (not easy but OK) with colonics to help get out of the body the dead bacteria and ameaba.

    I hope to get better by uncovering another piece of the puzzle in addition to many steps I have done in the past. I will let you know how it works.

    He also recommended many alternative medications such as large doses of Vit B12, Chlorela, and more

    Take care

    Recovering R

    [This Message was Edited on 04/10/2009]
  2. ladybugmandy

    ladybugmandy Member

    ruti...thanks for posting this information!

    you actually get colonics?? are they like enemas?

    please keep us posted on your progress!!!

  3. spacee

    spacee Member

    I think if I had a doc to pick to see, he would be the top one. I thought he came to the new Reno Clinic. Maybe he goes back and forth.

    He sure is thorough. That is fabulous. Hard work, I have no doubt.

  4. ruti

    ruti Member

    Hi Sue and Spacee

    Thanks for your intrest. In the US the RED lab is doing many of the tests that prof De Meierler is doing in Belgium and they might have some professional ties with him - I am not sure. Some of the testing are possible to do in regular clinics and labs - unforetunately the doctors don't try to look at all directions and we keep going to many many doctors - each is looking at his narrow corner.

    I do colonics for a few years now, it has helped me very much. It is a similar concept to an anema but much bigger and it goes for the whole large intestense. They put a small tube in your butt, entering water and taking out the stool in a tube (it is not smelly). The water soften everything and helps clean it.
    it is like going to the bathroom 30 times. It helps creating a better enviroments for flora and if there are toxins it takes them out and it is helping the body to clear toxins and get to a better situation.

    Take care Ruti
  5. ladybugmandy

    ladybugmandy Member

    ruti.... i have sent blood to redlabs 3 times now...and those tests have helped me a lot in deciding which treatment to choose for my CFS.

    may i ask what your RNase L activity (RNAA) and RNase L ratio (RNAP) values are? Mine were abnormal the last i checked, but better than before.

    i always thought colonics weren't healthy...what did demeirleir say about them?

    thank you!
  6. ruti

    ruti Member

    Who helped you with testing to the red lab? are you doing it yourself?

    I am not sure - I think the Rnase values were mild and not too bad. I don't see it in the testings - which test it is? (although my decision to go all the way to see him was beacuse of this test that no one else has)

    in the summary he wrote:
    Elastase - mildly incresed
    LMW RNasel 0.51 (normal < 0.5)
    NO in serum - elavated.

    Does it tell you something?

    I think colonics are very helpful especially when you try to clear toxins out of the body and try to maintaing a good functioning gut.

    This is wonderful the signs of your immune system are getting better.
    What are you doing to help it?

    I hope you get much better soon
  7. ladybugmandy

    ladybugmandy Member

    ruti.....when the RNase L activity is very high (mine was almost 2000!!), demeirleir says it means active virus. i did my own research and sent away for the tests (with the help of my local GP and a nurse friend).

    i am not sure what to make of your results ...i would guess your problem is bacterial....but that's just an uneducated guess!

    i am better now but it has taken 2 yrs of antiviral treatment and A LOT of suffering and patience!

    best of luck!
  8. ruti

    ruti Member

    Is the test results I wrote for the Rnase is it the same test in which you got 1200? Does that mean I don't have a problem with the short Rnase?
    De Meirler didn't think the measure for Fibromialgia is my biggest problem

    You are right my problem is bacteria in the gut and a parasite Blastisitis (ameaba)
    I started taking antibiotics now for it.

    Thanks Ruti
  9. shari1677

    shari1677 New Member

    Unfortunately, my treatment boils down to the simple matter of cost. If you don't mind, can you give me a range what the expenses may be to these tests?

    Oh BTW, the colonics sound very painful. I had read somewhere that if someone gets THIRTY colonics in THIRTY days, it will clear out almost anything.

    [This Message was Edited on 04/10/2009]
  10. ruti

    ruti Member

    colonics is not painful. sometimes the woman presses on the belly to help and it can be uncomfortable. I wouldn't do colonics everyday and I would take some time between them for the body to be balanced and it takes 1 day or more to clear the effects of the colonics (ruuning to the bathroom)

    I think I did all possible tests that Prof De Meirleir does since there were many directions to check. He talks to everyone first and has a thourough questioning before he decides what tests to do. International people come for 2 days and they do everything during this time + I got a kit to send a stool test to a lab in the US.
    I did some of tests at home - although he prefers doing them all in his office since he does them in a certain way and you don't always get exactely the same tests elsewhere.
    I did at home the 2 breath tests to check for Lactose (milk) and Fructose mal absorsion. I did that through the regular medical insurence (if you are going to do that it is a good idea to get clear instructions. For example, They stopped my fructose test after an hour and a half when it was positive. He wanted both breath tests to go for 3 hours (the time they do to people whose test is not positive and he can learn more things from it.
    I also did heart and lung tests at home - stress test (argumetria on a trade meal), AKG, Ecco test.
    For lungs I did capacity of lung in effort and saturation (how much oxigen is in the blood by putting a little equipment on the finger

    I had to stay in Belgium in Brussells for 2 nights - monday (early in the morning and Tuesday) - Brussel is expensive especially on nights when many people come to Europinion Union on Tuesday night)
    The doctor's visit was cheap - 50 Euro + phone consultation after getting results - another 50 Euro
    Blood Tests 1700 Euro
    Stool test 175 $ + postal for quick delivery between countries.

    He would like me to come again after 3 months. I don't know if I can effort it (and it takes me longer to do the treatements.)
    I do want / need to repeat a small portion of the tests to see how I recover. I am not sure - maybe it is possible to send a bllod sample from a distance.

    I needed the Alinia medication which you can not get in this country and it costs an a equivalent of 2000 $ (you can get it cheaper but I had to get it legally in the country and my insurence helped me. - for treating the Blastosotis ameaba
    ( he also suggested a cheaper medication if I can't effort this one)

    I got antibiotics that I got through my regular health system and it didn't cost.
    The gamma globulines I will take only if my health system will give it to me - it is very expensive.
    He recommended a whole bunce of alternative vitamines and suppluments and I didn't get all of them yet - it is expensive but not bad (vit B12 shots with a hugh amount of 10 mg
    per shot, a chinese mushroom from the mountains, chlorela, enzemes and a few more.

    I have a private health insurence and I am arguing with them now so they will cover some of the costs.

    They wanted me to get a letter from an expert doctor in the country that says I need to go abroad to see this doctor and do these tests. Of course it is impossible. I did go privately to the best known doctor in the country for FM to get a letter from him - It was very disapponting.
    He is the expert so why go any other place?
    He focused only on very narrow aspects as a Fibromalgia doctor will do - he can give me pain medications for my pain in the joints. For my digestive problems - he sent me to a gastro doctor and he didn't see any connection between that and the FM.
    Then he had never heard of DE Meirlier - finally he stoped the meeting in the middle and didn't charge me. Go explain your insurence why no doctor in the country (and in most of the world) can't do the diagnosis DE Meirler can do.
    I sent them his backgroung - I will continue to fight for that.

    It is very expensive - but we all spend a lot of money for years on doctors, colonics, suppluments and not being able to work or to work as much as we would like and we go to too many doctors and tests with no good direction. I feel it is worth the money and I hope I can get some back from the insurence.

    I hope I hepled. Again, each one gets other tests.

    There were many people from Europe, especially scandinavian people (it is a plague over ther - CFS), there were even Australian women.


  11. ladybugmandy

    ladybugmandy Member

    ruti....the RNase L activity (RNAA) was 1885 for me....the ratio RNAP (that was 0.51 for you) was i think 3.5 for me.

    i wonder if you can ask demeirleir's office to mail you your actual is very important to have them for future reference...

    best of luck with your treatment!!!!!

  12. ruti

    ruti Member

    I did get my actual results but the ones on the Rnse are not clear to me and where I look at them

    Thanks for your info and wishing.
    I am glad to see you are making progress too.

  13. ladybugmandy

    ladybugmandy Member

    there should be something saying "RNAA" and RNAP"
  14. ruti

    ruti Member

    I see now that I miss this page with the results from red lab and I think I did get it - I am looking again. It helped me see that I miss it.
  15. ruti

    ruti Member

    Hi Sue - I asked to get my Red lab results and they send it to me. the RNAA - Rnase L activity assay is 64 (normal is less then 50) and the
    ratio was 0.51 (RNAE - Rnase L protein Quantitation (normal is less than 0.5

    Do you know how to interpret these results? They added a note saying that elevated values might show of CFS

    I also got ANOX antioxidants 3.34 (normal 0.33-0.65)

    Thanks Ruti
  16. englishbob78

    englishbob78 New Member

    Hi Rudi,
    I was wondering how long you had to wait before seeing Dr Meirleir. I have just sent off for his hydrogen sulphate test and am waiting for the result before i book an appointment.
    Thanks and best wishes
  17. simonedb

    simonedb Member

    I know dr cheney recs that med too, didnt know you couldnt get it in the u.s.

    i am appealing to my ins co right now to pay my 1300$ redlabs (now vip) bill for cfs test, i even had my regular u.s. mainstream doc right them a letter of med necessity for it and they rejected it as experimental, so i am going to get research and doctors protocols together to take them in an appeal meeting when they finally schedule one for me, maybe i will post for good links on info on that, anyway, curious if the ins ever paid for de merleirer in yr case

    how long of a trip is it to belgium? he sounds thorough although all the stuff he does there are various docs around u.s. that do a lot of those things too, just hard to find it all in one place and for a reasonable price...
  18. ruti

    ruti Member

    I am not living in the U.S.
    My private insurence finally paid most of the cost of the visit and tests which were very expensive. They also paid for the Alinia which I had to special order from out of the country (they didn't pay flight and hotels).

    If you did many tests in the redlab you might already have most of what you need. Maybe you can try to have a consultaion with Prof. Demeirler from a distance after sending him the results - I don't know if it is possible - you will have to ask there. He used to have a special arrangement for people who are coming from outside Belgium (and there are people from all over the world who are going to him) to have the meetings with him and all the testings in 2 consecutive days - used to be Monday and Tusday.
    What was the Alinia for? What did they find in the tests?
    Finding bacteria and getting treatment is very good news!! It means there is a direction to go for recovery.
  19. ruti

    ruti Member

    It was a few months of wait.
    Did you already do the H2S test? What are the results?
    He usually takes lots of blood tests and it takes a few weeks or more for all the results to come back - so the analysis of the results and recomandations come much later. People who can - many times from Europe then come again for a consultaion. It is also possible to have a phone consultaion.

    if H2s shows it probably means there is an overgrowth of bacteria
    in the gut.
    Good luck and I will be interested to hear more about your visit to Prof. Demeirler