Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 Hello Matt, I am in Holland too. My doctor is dr P. van Meerendonk in Utrecht and he does much of the kind of stuff discussed on this list. He had us tested for mycoplasma's at dr. Nicholson's lab and we (my son and me) are now on antibiotics. He also uses Immunepro (tried it myself but backed off for now because of negative reactions). You should find some of Dr. De Meirleir's patients on the Dutch/Belgian list: Voor betrokkenen bij ME/FM/Lyme ziekten <ME-NET@... I know that Dr De Meirleir has his patients also tested at dr Nicholson's lab. nne Matt Hoppe wrote: > > I live in Holland, only about two hours from Brussels, where Dr. > Meirleir practices. He is the Dr. Meirleir of REDD fame. I have an > appointment with him for November 6. Has anyone seen him or can give > me any idea of what to expect? Especially if he is open to trying > some of the protocals discussed on this list. I want to be hopeful, > as I never been able to see a doctor who actually speciallized in > CFS. I have not yet found one in Holland. However, I have been > disappointed by doctors so often... > > Matt > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 I am curious, does dr P. van Meerendonk also do coagulation testing? (http://www.hemex.com/cfs/) if not, why not? M Lassesen, M.S. ex " Dr.Gui (MSDN) " , " Dr. VB " cv: http://www.folkarts.com/kenl/ KenL@... Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 Re: Dr. Meirleir Hello Matt, I am in Holland too. My doctor is dr P. van Meerendonk in Utrecht and he does much of the kind of stuff discussed on this list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 Ken Lassesen wrote: > > I am curious, does dr P. van Meerendonk also do coagulation testing? (http://www.hemex.com/cfs/) if not, why not? > > M Lassesen, M.S. Hello Ken, I haven't asked him yet but it is the next thing on my list. I tried the aspirine, it seemed to help at first. I stopped it again because I think I sensitized to it. So now I am on just antibiotics, a general supplement and some extra magnesium malate. Dr v Meerendonk gave me a prescription for the aspirin when I asked (for insurance purposes), but we didn't discuss it then. The main problem with Hemex testing will probably be that it is expensive and not covered by insurance. Besides myself my son and husband are also diagnosed with mycoplasma's. nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 Some of the hemex tests are available from conventional labs... example: FIBRINOGEN: also known as: factor I; hypofibrinogenemia test; plasma fibrinogen; serum fibrinogen http://www.folkarts.com/idef/fibrinogen.htm so you should be able to get at least partially testes with European labs - it will not be as " whole " picture as Berg ... but since the treatment is usually heparin, then it may suffice to justify and determine the appropriate levels of heparin. M Lassesen, M.S. ex " Dr.Gui (MSDN) " , " Dr. VB " cv: http://www.folkarts.com/kenl/ KenL@... Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 Re: Dr. Meirleir Ken Lassesen wrote: > > I am curious, does dr P. van Meerendonk also do coagulation testing? (http://www.hemex.com/cfs/) if not, why not? > > M Lassesen, M.S. Hello Ken, I haven't asked him yet but it is the next thing on my list. I tried the aspirine, it seemed to help at first. I stopped it again because I think I sensitized to it. So now I am on just antibiotics, a general supplement and some extra magnesium malate. Dr v Meerendonk gave me a prescription for the aspirin when I asked (for insurance purposes), but we didn't discuss it then. The main problem with Hemex testing will probably be that it is expensive and not covered by insurance. Besides myself my son and husband are also diagnosed with mycoplasma's. nne ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 Thanks Ken, nne Ken Lassesen wrote: > > Some of the hemex tests are available from conventional labs... > > example: > FIBRINOGEN: also known as: factor I; hypofibrinogenemia test; plasma fibrinogen; serum fibrinogen > http://www.folkarts.com/idef/fibrinogen.htm > > so you should be able to get at least partially testes with European labs - it will not be as " whole " picture as Berg ... but since the treatment is usually heparin, then it may suffice to justify and determine the appropriate levels of heparin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 You'll be fine as long as you speak Flemish!! (Dutch should be close enough!). I mean as long as you are not French speaking. I had a very BAD EXPERIENCE with him 2 and a bit years ago at a time when he ONLY believed in Ampligen and in a viral/immune dysfunction aetiology. He would NOT have a bar of mycoplasma, abx, etc. He was very brutal with me as soon as he had got my blood for his then experimental RnaseL testing, he also pretended he would have my blood tested for several viruses (took loads of blood) and then never tested anything. He then just got rid of me like I was no use to him for his Ampligen business venture. I am quietly giggling to myself now when I see that he does HEAPS of mycoplasma testing (he sends them to Nicolson's lab) and that he treats with abx. Need I say I don't like the man? His Flemish patients seem to like him, but I guess the European situation is so bad any doctor who actually believes that you're ill can easily become a god-like creature to the desperate Nelly Pointis (in case anyone would like to send this to him, I would hate for him to NOT know who has such a poor opinion of him). -----Message d'origine----- De : Matt Hoppe <hoppe@...> À : egroups <egroups> Date : samedi 19 août 2000 11:29 Objet : Dr. Meirleir >I live in Holland, only about two hours from Brussels, where Dr. >Meirleir practices. He is the Dr. Meirleir of REDD fame. I have an >appointment with him for November 6. Has anyone seen him or can give >me any idea of what to expect? Especially if he is open to trying >some of the protocals discussed on this list. I want to be hopeful, >as I never been able to see a doctor who actually speciallized in >CFS. I have not yet found one in Holland. However, I have been >disappointed by doctors so often... > >Matt > > > > >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Thanks for the report, Nelly. At least I know what to expect. I am worried that he might have a little of tunnel vision on the REDD, and I am not really prepared to try ampligen yet. I am glad to hear he does mycoplasma testing. Maybe he has broadened his views now? Matt > You'll be fine as long as you speak Flemish!! (Dutch should be close > enough!). I mean as long as you are not French speaking. > > I had a very BAD EXPERIENCE with him 2 and a bit years ago at a time when he > ONLY believed in Ampligen and in a viral/immune dysfunction aetiology. He > would NOT have a bar of mycoplasma, abx, etc. He was very brutal with me as > soon as he had got my blood for his then experimental RnaseL testing, he > also pretended he would have my blood tested for several viruses (took loads > of blood) and then never tested anything. He then just got rid of me like I > was no use to him for his Ampligen business venture. > > I am quietly giggling to myself now when I see that he does HEAPS of > mycoplasma testing (he sends them to Nicolson's lab) and that he treats with > abx. > > > Need I say I don't like the man? His Flemish patients seem to like him, but > I guess the European situation is so bad any doctor who actually believes > that you're ill can easily become a god-like creature to the desperate > > Nelly Pointis (in case anyone would like to send this to him, I would hate > for him to NOT know who has such a poor opinion of him). > > -----Message d'origine----- > De : Matt Hoppe <hoppe@s...> > À : egroups <egroups> > Date : samedi 19 août 2000 11:29 > Objet : Dr. Meirleir > > > >I live in Holland, only about two hours from Brussels, where Dr. > >Meirleir practices. He is the Dr. Meirleir of REDD fame. I have an > >appointment with him for November 6. Has anyone seen him or can give > >me any idea of what to expect? Especially if he is open to trying > >some of the protocals discussed on this list. I want to be hopeful, > >as I never been able to see a doctor who actually speciallized in > >CFS. I have not yet found one in Holland. However, I have been > >disappointed by doctors so often... > > > >Matt > > > > > > > > > >This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 I've had contacted Dr Meirleir 5-6 times. He definitely is a huge believer in Ampligen and the RNase L testing. He seems bright, though I'm not too qualified to say, based on my few conversations w/ him. He also uses Isoprinosine now, w/ some success. I am very interested in your dealings w/ him. Please keep me updated. Thanks, Jim > > > > >I live in Holland, only about two hours from Brussels, where Dr. > > >Meirleir practices. He is the Dr. Meirleir of REDD fame. I have an > > >appointment with him for November 6. Has anyone seen him or can > give > > >me any idea of what to expect? Especially if he is open to trying > > >some of the protocals discussed on this list. I want to be hopeful, > > >as I never been able to see a doctor who actually speciallized in > > >CFS. I have not yet found one in Holland. However, I have been > > >disappointed by doctors so often... > > > > > >Matt > > > > > > > > > > > > > > >This list is intended for patients to share personal experiences > with each > > other, not to give medical advice. If you are interested in any > treatment > > discussed here, please consult your doctor. > > > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 The one concern I had with Meirleir was his support for using ampligen his financial ties related to ampligen need to be looked at the last time i remember reading about him, he had only tested it on an extremely small number of people next time someone talks to him, ask him what studies make him a believer. ask him why the first major US patient study was such a major failure. Fluffy > I've had contacted Dr Meirleir 5-6 times. He definitely is a huge believer in Ampligen and the RNase L testing. He seems bright, though I'm not too qualified to say, based on my few conversations w/ him. > > He also uses Isoprinosine now, w/ some success. > > I am very interested in your dealings w/ him. Please keep me updated. > > Thanks, > > Jim > > > > > > > > >I live in Holland, only about two hours from Brussels, where Dr. > > > >Meirleir practices. He is the Dr. Meirleir of REDD fame. I have an > > > >appointment with him for November 6. Has anyone seen him or can > > give > > > >me any idea of what to expect? Especially if he is open to trying > > > >some of the protocals discussed on this list. I want to be hopeful, > > > >as I never been able to see a doctor who actually speciallized in > > > >CFS. I have not yet found one in Holland. However, I have been > > > >disappointed by doctors so often... > > > > > > > >Matt > > > > > > > > > > > > > > > > > > > >This list is intended for patients to share personal experiences > > with each > > > other, not to give medical advice. If you are interested in any > > treatment > > > discussed here, please consult your doctor. > > > > > > > > > > > > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
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