Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hello!, For some time now, I have been discussing the LDN trial with one of the Italian docs. They have found variation in endorphin levels in MS patients. Her letter below is for your info. If you have any comments, I would appreciate it, if you could forward them to me and I will channel them to her. Her big question is, on what kind of MS patients should the trial be done. Perhaps, I should also ask Dr.Bihari. Where I will need your help is, 1) if she wants to be in contact with real patients who have benefitted from LDN, as opposed to those who just want a LDN trial. The info I would need is what kind of MS you have, how long have you taken LDN and how did it help. 2) I know Sam/red truck has a website showing some of this, but it does not classify patients by type of MS, dose and how benefitted. For example does it work best in RRMS or some other type. Also, it would be great if some computer savvy person (Sam ?) can get this information. I feel we have a real chance here. Yash " I think we are going towards the same targets I spoke with my collegues, they are interested but there are a lot of questions they put on me. First of all they wonder why the firm making naltrexone doesn't orchestrate by itself a clinical trial if the results can be so promising. Second in Italy there are more severe rules regulating clinical trials on disease with an already good therapy. It's going to be hard pushing patients towards some different drugs. What kind of patients are those enrolled in your study? Relepsing remitting or secondary progressive or primary? Did they themselves ask different drug (compared with copaxone or Iterferons) or did you offer this new drug? Did you evaluate Bendorphin levels during treatment? Throughout next 20 days I'm going to prepare a preliminary protocol with the scientific and clinical background to convince my chief that a pilot study could be a nice idea. If you have any anedoctal cases, data about animal trials or somehow interesting materials , please do not hesitate to send it me " thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 I'd be happy to help; I've been taking LDN @ 4.5 since October of 2003. I have RRMS (diagnosed 8/2003). I have NOT tried the ABCR drugs, nor have I measured my B endorphin levels. Send me private mail if I can help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 You could copy the Testimonials at RemedyFind: http://www.remedyfind.com/rem.asp?ID=4393 > Hello!, For some time now, I have been discussing the LDN trial with > one of the Italian docs. They have found variation in endorphin > levels in MS patients. Her letter below is for your info. If you have > any comments, I would appreciate it, if you could forward them to me > and I will channel them to her. Her big question is, on what kind of > MS patients should the trial be done. Perhaps, I should also ask > Dr.Bihari. > > Where I will need your help is, > 1) if she wants to be in contact with real patients who have > benefitted from LDN, as opposed to those who just want a LDN trial. > The info I would need is what kind of MS you have, how long have you > taken LDN and how did it help. > > 2) I know Sam/red truck has a website showing some of this, but it > does not classify patients by type of MS, dose and how benefitted. > For example does it work best in RRMS or some other type. Also, it > would be great if some computer savvy person (Sam ?) can get this > information. > > I feel we have a real chance here. > > Yash > > " I think we are going towards the same targets > I spoke with my collegues, they are interested but there are a lot of > questions they put on me. First of all they wonder why the firm > making naltrexone doesn't orchestrate by itself a clinical trial if > the results can be so promising. Second in Italy there are more > severe rules regulating clinical trials on disease with an already > good therapy. It's going to be hard pushing patients towards some > different drugs. What kind of patients are those enrolled in your > study? Relepsing remitting or secondary progressive or primary? > Did they themselves ask different drug (compared with copaxone or > Iterferons) or did you offer this new drug? > Did you evaluate Bendorphin levels during treatment? > > Throughout next 20 days I'm going to prepare a preliminary protocol > with the scientific and clinical background to convince my chief that > a pilot study could be a nice idea. If you have any anedoctal cases, > data about animal trials or somehow interesting materials , please do > not hesitate to send it me " > thanks Quote Link to comment Share on other sites More sharing options...
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