@sarah darwins In another thread, someone said that he emailed to OMI to ask about the success rates and they emailed back that they got the same results as in Norway.
best treatments at the moment
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taniaaust1
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I'm interested in both antivirals and Rituximab and would try taking both of these if I had the chance (but only the Rituximab due to the severe problems I have the ME). If I had to pick between these two, I'd pick first trialing antivirals first as I know many more here who have been helped by antivirals then have been by Rituximab (anti-virals more tried and tested among us so possibly safer). You are so young, are you sure its wise to be so focused on this drug which haven't been used a lot yet for ME/CFS...
Dr Kenny de Meirleir has got a fairly good reputation among our communities...
Dr Kenny de Meirleir has got a fairly good reputation among our communities...
sarah darwins
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I'm not questioning whether it 'works', or whether the OMI doctors know how to treat with it. My concern was whether the early Norwegian trial results indicated high relapse rate (not to mention the dangers associated with the drug itself).
I'm not trying to put you off — you're a grown-up and should make your own choices. Just be aware that it's not a miracle cure, and there are a lot of unknowns about it.
You've probably seen it, but this thread has masses of information and opinions: http://forums.phoenixrising.me/index.php?threads/would-you-take-rituximab.14532/
ps. I'm sure the doctors at OMI will make you aware of all the risks regarding any treatment. But it's a long way to travel, so it's good to learn all you can before you go. Good luck, anyway.
Biarritz13
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You could look for Ampligen on this forum. Dr. Peterson uses it more than any other doctor.
@taniaaust1 I will do exactly what you say! OMI always tries antivirals and other supplements first before they go on to Rituximab. I will only try Rituximab if nothing else works.
@sarah darwins Thank you for the helpful advice.
@sarah darwins Thank you for the helpful advice.
sarah darwins
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Yes. And worth remembering that the OMI doctors, if they were operating in Belgium, would also not be included in governmental schemes like the order of medicine (which I think is a sort of 'quality assurance' scheme for medicine in Belgium). They use a lot of treatments which are not covered by any European guidelines.
@sarah darwins I just can't convince my parents to visit De Meirleir because my local GP said he is a joke (which I don't believe!)
roller
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funny, as he is the one who cant help you...
sarah darwins
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Understood. If they're paying the bills, you have to work with them. He's certainly not a joke, but he's operating in a very controversial area (like all ME doctors) so this kind of extreme and sometimes hostile view is inevitable. If you're happy to travel to California, great (and warm .... sigh).
@sarah darwins Very frustrating to hear those things about someone like De Meirleir when you're so desperately in need for help!
sarah darwins
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Yes, the real joke is the crap most of us get from GPs, or the fact that you're considering travelling from Belgium to the American west coast to find someone who will do anything for you (your GP should be embarrassed about that).
But you have to work with how things are, not how you'd like them to be. Good luck.
I'm from brussels, diagnosed with CFS last year (6 years since i got sick) and no one told me anything about KDM. That's a big joke. Not where i got diagnosed (KUL) even when i asked them about specialists for CFS, not my GP... They just don't care. Only heard about him searching online (thanks to PR!)
I have an appointment with him on March 2. Maybe the solution is not so far from home....
I have an appointment with him on March 2. Maybe the solution is not so far from home....
lansbergen
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Your GP sould read KDM's early reports. They are in dutch. Mayby he can learn something from the hypotheses.
roller
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does he treat autistics/adhds as well?
Biarritz13
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Rituximab depletes the B cells which is followed by a repopulation several months after treatment.
I don't know a lot about it but the relapse is normal I guess.
Snowdrop
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@andreasvq
It may be that you go to the OMI and the treatment they suggest is not Rituximab.
Im not certain but I think they use various treatments depending on the particular outcome of the tests they do.
It is different in the US compared to UK/EU. it may be that KDM gets dissed in UK/EU because he is willing to treat ME patients and his means are not conventional--especially to the medical climate of CBT/GET more heavily promoted there.
In the US there is less continuity and I think more leeway for treating ME without towing the party (CBT/GET line) and less censure for doing so.
KDM is probably suffering from 'whispers behind his back' of people who support CBT/GET trying to dissuade people from going to someone who treats ME biologically. It wouldn't look good for them if people got better and the treatment wasn't CBT/GET
I have also heard however (can't remember who) that KDM manner is brusque with patients--he's very busy and he does seem to care but he doesn't spend time getting to know you idly talking etc.
And I would guess not all are satisfied with him either. Anybody treating ME seriously and with proper biological treatments is to some extent unsure about the outcome (this is true for even cancer patients--you can't know how it will go) but the point is that especially for ME there is a lot unknown here.
Since you have chosen to go to the US because you see it as the best I would suggest that you don't set your sights too high.
It may turn out very well for you -- you are young and have not been sick too long. But it's easy to overshoot one's hopes.
Even at the OMI there are no assurances.
Edit: should have read to bottom of thread
Everything here pretty much covered.
Good luck Andreas.
It may be that you go to the OMI and the treatment they suggest is not Rituximab.
Im not certain but I think they use various treatments depending on the particular outcome of the tests they do.
It is different in the US compared to UK/EU. it may be that KDM gets dissed in UK/EU because he is willing to treat ME patients and his means are not conventional--especially to the medical climate of CBT/GET more heavily promoted there.
In the US there is less continuity and I think more leeway for treating ME without towing the party (CBT/GET line) and less censure for doing so.
KDM is probably suffering from 'whispers behind his back' of people who support CBT/GET trying to dissuade people from going to someone who treats ME biologically. It wouldn't look good for them if people got better and the treatment wasn't CBT/GET
I have also heard however (can't remember who) that KDM manner is brusque with patients--he's very busy and he does seem to care but he doesn't spend time getting to know you idly talking etc.
And I would guess not all are satisfied with him either. Anybody treating ME seriously and with proper biological treatments is to some extent unsure about the outcome (this is true for even cancer patients--you can't know how it will go) but the point is that especially for ME there is a lot unknown here.
Since you have chosen to go to the US because you see it as the best I would suggest that you don't set your sights too high.
It may turn out very well for you -- you are young and have not been sick too long. But it's easy to overshoot one's hopes.
Even at the OMI there are no assurances.
Edit: should have read to bottom of thread
Everything here pretty much covered.
Good luck Andreas.
Hi Andreas.
I don't know if u still read the forum, if u already decided to go to USA for treatment or whatever, but feel that i have to give you my experience with Dr. De Meirleir. I went to see him twice, did all test he asked, and results were positive to borrelia ( lyme disease). Lyme is now inactive but caused a lot of damages (after almost 10 years...). Gut inflammation, neurotoxine, high ammoniac and many others problems. He will send me my treatment plan next week so i don't know exactly what it will be, but for sure antibotics, vitamins, phytotheraphy to maintain lyme inactive and i don't know what else right now. He told me first meeting that his goal is that i reach 80-85% of my prior health after one year of treatment ( which would be great). Probably you could recover more (if i remember correctly u are sick for 2,3 years, could really help getting treated faster).
I can't really tell you that you have to meet him, that he's the best option or not, but right now he did more for more than every other doctor i went to. Of course i know what he did was the ''easiest'' part ( was very impressed by him first meeting and i finally got a ''real'' diagnostic after 7 years and i know why i'm sick and got CFS). I know the treatment part will be the most difficult part, and it's soon for me to say that he could treat you (and that he will treat me) and that you need to go to see him, but i'm quite optimistic.
Last thing I wanted to say is about Rituximab because it seemed that you wanted to be treated with that medication. I asked him on the first meeting if he uses that and what he thinks about Rituximab. He said that his opinion changed a bit about that medication, and that he uses a '''prudence'' approach with it. He is using Rituximab for some of his patients ( still don't know if he will recommend it to me) but with really small doses, because he thinks that it could be very dangerous for the body to use higher doses.
Don't know if u will read that post, but i felt i had to give you some feedback. Now i'm waiting for my treatment plan and ready to start a ''new'' fight.
Regards
David
I don't know if u still read the forum, if u already decided to go to USA for treatment or whatever, but feel that i have to give you my experience with Dr. De Meirleir. I went to see him twice, did all test he asked, and results were positive to borrelia ( lyme disease). Lyme is now inactive but caused a lot of damages (after almost 10 years...). Gut inflammation, neurotoxine, high ammoniac and many others problems. He will send me my treatment plan next week so i don't know exactly what it will be, but for sure antibotics, vitamins, phytotheraphy to maintain lyme inactive and i don't know what else right now. He told me first meeting that his goal is that i reach 80-85% of my prior health after one year of treatment ( which would be great). Probably you could recover more (if i remember correctly u are sick for 2,3 years, could really help getting treated faster).
I can't really tell you that you have to meet him, that he's the best option or not, but right now he did more for more than every other doctor i went to. Of course i know what he did was the ''easiest'' part ( was very impressed by him first meeting and i finally got a ''real'' diagnostic after 7 years and i know why i'm sick and got CFS). I know the treatment part will be the most difficult part, and it's soon for me to say that he could treat you (and that he will treat me) and that you need to go to see him, but i'm quite optimistic.
Last thing I wanted to say is about Rituximab because it seemed that you wanted to be treated with that medication. I asked him on the first meeting if he uses that and what he thinks about Rituximab. He said that his opinion changed a bit about that medication, and that he uses a '''prudence'' approach with it. He is using Rituximab for some of his patients ( still don't know if he will recommend it to me) but with really small doses, because he thinks that it could be very dangerous for the body to use higher doses.
Don't know if u will read that post, but i felt i had to give you some feedback. Now i'm waiting for my treatment plan and ready to start a ''new'' fight.
Regards
David
Snowdrop
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