The 12th Invest in ME Conference, Part 1
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De Meirleir full cost?

Discussion in 'ME/CFS Doctors' started by Folk, Nov 26, 2014.

  1. Folk

    Folk Senior Member

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    Anyone here know more or less how much would it cost for the whole treatment with Dr. De Meirleir?
    Tests, stay, consults, medications etc.

    thx
     
  2. alex3619

    alex3619 Senior Member

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    I don't know anyone can really answer this. They can however tell you what their own cost is. The main reason for this is that after an extensive battery of tests what KDM will do next depends on the results, and so do the costs.
     
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  3. Valentijn

    Valentijn The Diabolic Logic

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    My initial testing cost about 3,000 euros, though that can vary based on symptoms, what tests you want, and what tests you can afford. So you can talk to the doctor about it during the first appointment. Basically the doctor makes up the order forms, then a nurse goes over it with you later and you can cross off what you don't want.

    Appointments with the doctor are very cheap - 60 euros.

    Treatment depends on what problems are found. I inject 4ME every day, which is about 270 euros per month. I think the VSL#3 (probiotic) is also costing a bit, and not covered by insurance. A couple other supplements were prescribed for which I react badly to, so I don't buy those. HydroxoB12 also isn't covered by my insurance, and we get an import fee, but I think it's still pretty reasonable.

    A chronic Lyme infection was found in me, so I had 6 weeks of one IV antibiotic and 6 weeks of another antibiotic. We did the first week of each antibiotic at Dr. de Meirleir's clinic, which was quite cheap, aside from hotel expenses. I think it was 40 euros per day x 4 days per week for the first IV antibiotic, and just a little more for the 2nd antibiotic, but only 3 times per week. It cost 100 euros a day for a nurse in the Netherlands to come to my house to administer the antibiotics, and pharmacy costs were significant as well. I think it was about 6,000 euros. Theoretically we should be able to recover some or all of that from my health insurance.

    So that's looking like about 10,000 euros total. Though that will be a lot cheaper for someone living near KDM's clinic and getting IV antibiotics there instead, or doing a longer course of oral antibiotics instead of IV antibiotics. My Dutch insurance has automatically covered all of my oral antibiotics (2 different ones at the same time for 4 months so far) with no problems.
     
  4. maryb

    maryb iherb code TAK122

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    But also have to add food/accommodation/transport costs if you have Lyme and want to stay near the clinic for 3 months.
     
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  5. Folk

    Folk Senior Member

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    Would he be the most indicated for FMS too as much as he is for CFS?
     
  6. Daffodil

    Daffodil Senior Member

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    Folk....you could ask his clinic directly...i am not sure what his stance is on FM. you could maybe ask if he treats FM and if he has many FM patients. the email is:

    info@ehmb.be


    I am sure i have heard of patients with FM being treated there...
     
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  7. Folk

    Folk Senior Member

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    Thx, they said he does treat fibromyalgia.

    For those who were treated with him, how was it? do you have to stay in belgium for a long time or can you go there, and then proceed from home?
    I'm from Brazil it would be too expensive to stay there a long time.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You can also see him in Reno, Nevada. He will be there at the end of January. I don't know which is better for you in terms of airfares, though. His fee is more in the US than in Belgium.

    I used to fly from the US to Belgium and stay for 2 or 3 days, then have followup appointments by phone. Legally though, in order to treat you he has to see you in person every so often.

    Sushi
     
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  9. andre79

    andre79 Senior Member

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    If you can afford the expense, don't miss the opportunity to see De Meirleir. I had my appointment in January, I missed it and I regret it so much. I was in UK at that moment and just an eurostar journay away from him.

    But I didn't have money enough and now I am back to my country, and the cost for flying to Brussels is way bigger.

    You know, many doctors i have seen, claim that fibromyalgia is not a disease by itself but rather a symptom of something else. I have to agree with that, it is probably part of some autoinmune process which could be triggered by infection.

    So, if you manage to save maybe 5.000 euros go for it. You will get reliable tests, reliable diagnosis and good treatment. The only problem i see is that if you get the diagnosis and treatment with him, and decide to go back to your country, finding a doctor that supervises you would be difficult. They just don't like to follow someone else protocol.
     
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  10. Folk

    Folk Senior Member

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    Yes yes. Obviously money is my biggest issue so I'm trying to work on it as it will be a one shot to hit it.

    @Sushi How did it go for you? Was he able to help you?
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I have been seeing him for several years and he has helped me a lot. There are no guarantees though sadly.

    Sushi
     
  12. Folk

    Folk Senior Member

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    Well I think in medicine there are never guarantees actually...
    But it's nice to hear he's helping you. I've read amazing feedbacks about him but also read that he can get quite unpleasant some times.

    It looks like in a range of no guarantees, he still the closest there is to something like that heheh.
     
  13. Daffodil

    Daffodil Senior Member

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    i definitely would say he is the person to see. in my experience, it has not been that hard to find a local doctor to follow his protocols, because so many doctors are frustrated at not being able to help their CFS/FM patients, that many are gladly willing to try things (but certainly not all). I have found it easier in general to be treated by general practitioners than specialists and preferably a younger doctor. If you prefer specialist, I would go to an infectious disease one and not a neurologist or rheumatologist.

    Some things I can still never get locally, such as IV antibiotics, but I am not sure how things are in Brazil about that. KDM is finding Lyme in most of his patients.

    In time, you get used to the quirks of his personality and you will know how to pose questions and get the answers you need.

    You will have to see him in person at least once a year.
     
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  14. RML

    RML Senior Member

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    When I was in the thinking of seeing him phase and trying to plan finances involved, I did look towards other patients reports of their experiences too. But in all the thinking and planning, I was mainly focused on the first visit and appointment. I didn't too much consider the on-going costs.Testing wise, this first visit will be most expensive as he does extensive range to eliminate things and also of course pin point the cause of your problems.

    But it is a long process, and will need to have follow up appointments and tests and treatments Some people respond better or quicker to treatments too, and depends on how long you are sick etc. And like others have said, he doesn't have a set regime for treatment, I think he does a fairly individualized approach based on your own issues and test results. Which is a good thing of course, but hard to plan out costing wise. So to estimate a full treatment cost of yourself is pretty impossible really.

    For me, the biggest burden cost wise, was accommodation costs when staying there for 3 months of IV's. Also living expenses like transport and food too. On my last visit to him, he suggested more IV's to me, it was the accommodation costs and stress of finding somewhere that put me off, but I am considering it and deciding what to do/can afford. His own prices for consultation and treatments are decent enough though.
     
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  15. Folk

    Folk Senior Member

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    IV antibiotics as for those with lyme right? Or there's another use for it also?

    Why do you find it harder to get it in your place? No doctors to prescribe it?
     
  16. Daffodil

    Daffodil Senior Member

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    hi Folk. yes, for lyme.

    in canada, doctors who have prescribed IV antibiotics for lyme have lost their license so no one will do it.
     
  17. Folk

    Folk Senior Member

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    Well in Brazil they don't even know what Lyme is. At least not chronic lyme.

    But can't you manage to tell any story or get it behind curtains in any way?
    You know, to live outside the law you must be honest.
     
  18. Daffodil

    Daffodil Senior Member

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    hi Folk. no, it is not possible in Canada...I have looked into every avenue, believe me. The only option is for me to travel to British Columbia - naturopaths are allowed to prescribe antibiotics there - but they would charge me HUGE amounts of money more than KDM, and I would still have to pay for accommodation and travel. Also, they are currently not allowed to prescribe IV Azithromycin, which is what I was prescribed.

    Even if I were able to get it into the country somehow from the USA, I would have no way to infuse it myself. I wouldn't feel comfortable doing that and don't really know any nurses I could ask.

    I do fear that KDM might suggest more IV for me, because that will be very difficult to do again! I did it before while staying in Reno for 3 months, but the Reno clinic no longer does IV's. This time, I would have to stay in expensive Belgium for 3 months!
     
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  19. Folk

    Folk Senior Member

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    And doesn't he leaves you with some alternative to it? Or it gotta be IV antibiotics?

    How are you doing on it btw? How long should it take?

    I don't think it's probable I have lyme.. but who knows...
     
  20. Daffodil

    Daffodil Senior Member

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    hi folk. yes, there are some who cannot do IV and they do orals. I think some period of IV is better, that's all. Its never all IV...the majority of the treatment is oral.

    how long it takes depends on age, duration of illness, amount of co-infections etc etc

    I have been sick over 21 yrs, most very severely. I was told by the Reno lab that my inflammatory markers were one of the highest they had ever seen. KDM told me it would take about 4 yrs for me to feel significantly better (if i remember correctly). My neuro symptoms were especially severe.
     
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