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Professor de Merleir treatment?

Discussion in 'ME/CFS Doctors' started by maryb, Jun 29, 2010.

  1. maryb

    maryb iherb code TAK122

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    Any patients of Prof de Merleir on here, was wondering if he is treating anyone with Ampligen, I don't know a lot about this drug but see it is approved for use in Canada and Belgium. Would also be grateful for info about his general treatment programmes.
     
  2. Frank

    Frank Senior Member

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    where can you see that it's approved in Belgium? I'm not sure if that's correct
     
  3. maryb

    maryb iherb code TAK122

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    I found that info on the internet recently but can't seem to findthe exact one at present, the following is from Wikipedia,

    'In Belgium, Ampligen has been available for use since the drug's trial beginning in May 1996. It has also been available under Canada's Emergency Drug Release Program for both chronic fatigue syndrome (CFS) and HIV treatment since 1996, with marketing rights controlled by Biovail Corporation International.[7] '
     
  4. Tuha

    Tuha Senior Member

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    i am the pacient of him. I think he doesnt use Ampligen - he uses Nexavir. I cannot say in general but I think he is focusing a lot on GI problems and I also belong to this group of patients.
    I take his treatement for 9 months and my health improved quit good. I dont know what are you interesting in so if you have some concret questions...
     
  5. maryb

    maryb iherb code TAK122

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    Thanks Tuha if I have any specific questions I will PM you. Glad to hear your health has improved, thats what we're all wanting, hope very much it continues for you.
     
  6. Tony

    Tony Still working on it all..

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  7. If a patient is Canadian how do they get access to Ampligen?
     
  8. Athene

    Athene ihateticks.me

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    Just to confirm, he uses Nexavir not Ampligen.

    I have been a patient of his since August last year and I have got steadily worse and worse and worse during that time. I was moderatelyfunctional at the start, now I am bedridden apart from about 3 hours a day. Too ill to leave the house except to go to the doctor.
     
  9. maryb

    maryb iherb code TAK122

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    Sorry I don't know the answer but I do know the Canadians are far ahead of the UK in recognising the illness.
     
  10. garcia

    garcia Aristocrat Extraordinaire

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    Sorry to hear that Athene. Do you think any of the treatments he recommended have made you worse?
     
  11. Athene

    Athene ihateticks.me

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    I was getting a terrible toxic reaction to chlorella. I found out 30 percent of people are made v ill by it.
    I also had a terrrible reaction to Nexavir, as it is preserved in phenol and I am exceptionally intolerant to phenols.
    He prescribed pentasa, a sulfa drug which reduced inflammation in the intestine except in my case, I have abnormal sulphur metabolism so it did more harm than good.
    He was also prescribing antibiotics, which helped my intestine but are sulfa drugs and poisoned me as well as killing the bacteria.

    It took me a while to figure out all these reactions, as you are prescribed a whole bunch of stuff at once and passionately hope you are just getting herx reactions on the way to better health, so you persist even when it is clear you are falling off a cliff. I think the treatment as a whole poisoned me to the point my liver nearly dissolved into mush.

    I've stopped everything now and I hope I can just let my body detox itself a bit.

    The take home lesson is to check the ingredients of every single thing I put in my mouth and be very proactive in managing my own intolerances. Doctors never take notice of anything but the active ingredient in what they prescribe.

    I just want to balance all this by saying my son made a real improvements on the Meirleir treatment and I have a friend I met in his waiting room who has also improved drastically. She actually threw a party for 20 people last week!
     
  12. sandgroper

    sandgroper

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    Is it the Nexavir that has made you worse...or was it related to increased exertion from seeing him?
    I would be very interested to know as there is someone from Australia wanting to travel to see him
    and I thought of it myself.
     
  13. IntuneJune

    IntuneJune Senior Member

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    Athene stated The take home lesson is to check the ingredients of every single thing I put in my mouth and be very proactive in managing my own intolerances. Doctors never take notice of anything but the active ingredient in what they prescribe.

    Yes!

    My GI doctor is a great one for prescribing medications that contain gluten. I have celiac disease and it was his workup that showed evidence of such.

    June
     
  14. filfla4

    filfla4 Senior Member

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    Hi, I have an appointment to see Dr De Meirleir for the first time in November. I'm quite excited about this....pity I have to wait so long! :(

    Meantime, I'm struggling at this end. I already take the following meds: Celebrex 100mg (anti-inflam); Cymbalta 60mg (anti-d, with pain relief) and Stilnox 5mg (sleep aid).

    Yesterday my kind GP did a home visit and has now added another drug to the concoction: he has put me on Lyrica (just 75mg for the moment, to be increased next week).

    Do any of you out there take such a combination of drugs? I simply hate the fact that I'm taking all the meds and wonder what they're doing to my insides!!! Oh yes, I also take Nux Vomica homeopathic remedy!!!!!! :(

    Any thoughts?
     
  15. Rafael

    Rafael XMRV+ Member

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    "If a patient is Canadian how do they get access to Ampligen?"

    My belief, from asking this question of my specialist about 10 times over last 5 years is:
    You will have to bring proof of the Canadian regulation described above.
    You will have to find a source to supply it and a location to administer it (only available as an IV drip still at this point I am told)
    You will have to be able to pay (a tonne) for it yourself.
    You will have to convince your doctor to prescribe it (despite the anecdotal evidence and Biovail's claims, the mainstream published and peer reviewed results are not as convincing ... yet).
    My specialist says that the manufacturer, Biovail, has been keeping tight control of the product. I THINK that means that the product has not bean made available for either copying ($$understandable$$) or free/discounted use in independent studies.
     
  16. Athene

    Athene ihateticks.me

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    Hi Sandgroper,
    It was definitely the Nexavir, as the effect of the phenols was immediate and intense (migraine) and wore off after 48 hours, I tried it 3 times before giving up.
    Travelling is of course tiring, but KDM does telephone appointments and so does his nutritionist, so you don't have to go very often. Also, I have friends in Brussels so we stayed at their house and they took care of everything, it was actually more restful than being at home!
    KDM visits Australia to see patients. He goes twice a year I think. If you want to track him down you could try contacting his clinic in Belgium. PM me if you want their email address or phone number.
     
  17. ukxmrv

    ukxmrv Senior Member

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    'In Belgium, Ampligen has been available for use since the drug's trial beginning in May 1996. It has also been available under Canada's Emergency Drug Release Program for both chronic fatigue syndrome (CFS) and HIV treatment since 1996, with marketing rights controlled by Biovail Corporation International.[7] '

    ---------------

    Something happened around 2000 with licensing in Europe. I was offered it through Belgium but then it suddenly became unavailable. Patients had a Rnase-L test first and suitability was to be judged on that.
     
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    yes, I take similar medications.
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I take quite a few meds for sleep which i rotate between as well as tramal daily for chronic back pain and occassional anti-inflamatory for my back, i try to limit these as i have had stomach issues in the past from using anti-inflamatories as well as an antiviral and of course a fist full of supplements twice a day, lol. Alot of us take quite abit of medication asits mainly about treating symptoms in this game.

    cheers!!!
     
  20. roxie60

    roxie60 Senior Member

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    Wow, reading these posts I just want to cry knowing how much suffering is out there and Drs seem down right irresponsible. A GI Dr that finda a patient has Celiac and then prescibes a med with Gluten in it - un friggen believable, I swear they are irresponsible or lazy and they have a license to carry a gun called pharmacology. I just want to scream.

    My rhuemy wanted me to try Lyrica after discussing with P, my GP said she would not prescribe it and the nuerologist did not think Lyrica a good choice. Cymbalta nearly killed me, I became bedridden amongst a host of other horribly debilitating symps. Dsiclaimer: I know these meds have helped some but seems definitely a case by case.
     

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