Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 I've read on the main site about how LDN has reportedly helped Parkinson's sufferers, but have any Parkinson's sufferers on the list had any first hand experience of seeing/feeling the benefits? Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2006 Report Share Posted January 12, 2006 --- Hi , I have been taking 4.5mg of LDN for the past 18 months. When I first began, they said I had MS but that was changed to PD about 15 months ago. My main symptom was tremor which was greatly alleviated when I started on Sinemet and Mirapex 15 months ago. I was able to reduce the origional Sinemet dosage by 2/3rds over time and I still have no tremor. But, there is such a thing as the Sinemet " honeymoon " where PD symptoms are brought well under control for several years but than PD progresses. I have no way of knowing if LDN can stop disease progression but for now, I'm holding my own. It will be several years, I guess, before I'll know. Nothing to lose. Unfortunately, there are very, very few people with PD taking LDN. The only person who has patients who have been taking LDN for a number of years is Dr. Bihari and he is not well. The last follow up on his patients was done in 2003 in the LDN website. I really hope they can provide an up to date report on how these patients are doing. I feel I bought into an experiment and now the scientific leadership has left the scene and may not be coming back. He is the only doctor with a caseload of patients on LDN going back years. It is the basis for the claims made for LDN. Are there going to be periodic followups on these patients in the LDN website, or do we just talk to each other? If Dr. Bihari can no longer practice from his office (I really hope he can), who is going to continue his work on LDN? In low dose naltrexone , " " <rich1101hiro@y...> wrote: > > I've read on the main site about how LDN has reportedly helped > Parkinson's sufferers, but have any Parkinson's sufferers on the list > had any first hand experience of seeing/feeling the benefits? > > > Best wishes, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 I dont know if this helps, but, in the book up the creek with a paddle... a totally true account... mary uncle who lives in ireland has PD and is doing very well... again, I dont know if this helps [low dose naltrexone] Re: Parkinson's Disease --- Hi , I have been taking 4.5mg of LDN for the past 18 months. When I first began, they said I had MS but that was changed to PD about 15 months ago. My main symptom was tremor which was greatly alleviated when I started on Sinemet and Mirapex 15 months ago. I was able to reduce the origional Sinemet dosage by 2/3rds over time and I still have no tremor. But, there is such a thing as the Sinemet "honeymoon" where PD symptoms are brought well under control for several years but than PD progresses. I have no way of knowing if LDN can stop disease progression but for now, I'm holding my own. It will be several years, I guess, before I'll know. Nothing to lose. Unfortunately, there are very, very few people with PD taking LDN. The only person who has patients who have been taking LDN for a number of years is Dr. Bihari and he is not well. The last follow up on his patients was done in 2003 in the LDN website. I really hope they can provide an up to date report on how these patients are doing. I feel I bought into an experiment and now the scientific leadership has left the scene and may not be coming back. He is the only doctor with a caseload of patients on LDN going back years. It is the basis for the claims made for LDN. Are there going to be periodic followups on these patients in the LDN website, or do we just talk to each other? If Dr. Bihari can no longer practice from his office (I really hope he can), who is going to continue his work on LDN? In low dose naltrexone , "" <rich1101hiro@y...> wrote: > > I've read on the main site about how LDN has reportedly helped > Parkinson's sufferers, but have any Parkinson's sufferers on the list > had any first hand experience of seeing/feeling the benefits? > > > Best wishes, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 >I believe replied to a post several months ago about her uncle. In it, I think she mentioned her uncle was not taking any PD meds only LDN. If I'm correct on this, I would question if her uncle really has PD. If I sound negative, it's because there are very few people, other than those with MS, posting here with major diseases like Parkinson's and cancer. After viewing this site for two years, I am not getting a sense that many people with these diseases are using LDN. The only person who has long term data on such people is Dr. Bihari and that data was last posted in 2003. Hopefully, LDN is real but there has to be more input on the LDN website from Dr. Bihari's office. Is he the only doctor in his office and are patients still being seen? > I dont know if this helps, but, in the book up the creek with a paddle... a totally true account... mary uncle who lives in ireland has PD and is doing very well... again, I dont know if this helps > > [low dose naltrexone] Re: Parkinson's Disease > > > --- > Hi , I have been taking 4.5mg of LDN for the past 18 months. > When I first began, they said I had MS but that was changed to PD > about 15 months ago. My main symptom was tremor which was greatly > alleviated when I started on Sinemet and Mirapex 15 months ago. I was > able to reduce the origional Sinemet dosage by 2/3rds over time and I > still have no tremor. But, there is such a thing as the Sinemet > " honeymoon " where PD symptoms are brought well under control for > several years but than PD progresses. I have no way of knowing if LDN > can stop disease progression but for now, I'm holding my own. It will > be several years, I guess, before I'll know. Nothing to lose. > Unfortunately, there are very, very few people with PD taking LDN. The > only person who has patients who have been taking LDN for a number of > years is Dr. Bihari and he is not well. The last follow up on his > patients was done in 2003 in the LDN website. I really hope they can > provide an up to date report on how these patients are doing. I feel I > bought into an experiment and now the scientific leadership has left > the scene and may not be coming back. He is the only doctor with a > caseload of patients on LDN going back years. It is the basis for the > claims made for LDN. Are there going to be periodic followups on these > patients in the LDN website, or do we just talk to each other? If Dr. > Bihari can no longer practice from his office (I really hope he can), > who is going to continue his work on LDN? > > > > > In low dose naltrexone , " " <rich1101hiro@y...> wrote: > > > > I've read on the main site about how LDN has reportedly helped > > Parkinson's sufferers, but have any Parkinson's sufferers on the list > > had any first hand experience of seeing/feeling the benefits? > > > > > > Best wishes, > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Hi My uncle does indeed have PD and he is only on LDN .. nothing else. He was diagnosed by three different Neuros and Dr Bihari also confirmed the diagnosis independantly. My unlce will visit in March but by all accounts he has not progressed. He thinks he has at times and swears LDN is not working when he has a bad day .. because he still has a tremor in his arm and a little in his leg .. he had this before LDN .. everyone else tells me he is not progressing .. like his wife and closest family .. If he is progressing .. he admits he can still work 12 hours a day 7 days a week with boats and ferry boats .. That makes me think my family are right but i will confirm all in Marcb. He sounds great on the phone .. I talk with him often .. his voice is strong as are his spirits but he refuses to give LDN the credit I believe it desreves .... yet. I don't ask him to give LDN credit but equally he has not started anything else .. I will report in March. If i had PD I would stay on LDN until I knew for certain it was not working. All the Best > > > > > > I've read on the main site about how LDN has reportedly helped > > > Parkinson's sufferers, but have any Parkinson's sufferers on the list > > > had any first hand experience of seeing/feeling the benefits? > > > > > > > > > Best wishes, > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 One more thing and sorry about all of the typos .. I have a kid with a fever here .. but .. my uncle started LDN 4.5mg from irmats in Sept 2002 .. he was told he has PD 2 years prior but believes he had it for much longer than that .. > > > > > > > > I've read on the main site about how LDN has reportedly helped > > > > Parkinson's sufferers, but have any Parkinson's sufferers on > the list > > > > had any first hand experience of seeing/feeling the benefits? > > > > > > > > > > > > Best wishes, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Many thanks - this is invaluable stuff. Best wishes, and hopefully your kid has recovered too! > > One more thing and sorry about all of the typos .. I have a kid with > a fever here .. but .. my uncle started LDN 4.5mg from irmats in > Sept 2002 .. he was told he has PD 2 years prior but believes he had > it for much longer than that .. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Dear Pat, I hope if you try out LDN that it does help you a lot. Parkinson's and MS are both just BEARS of diseases.....I mean they are chronic and really no fun at all.I am glad to see anyone trying LDN.The more of us who find out about it and try it out, the more stats wil l accumulate and the better chance LDN has of getting the widespread reputation and approval from the medical community once and for all..Best of luck ,Pat and do keep us posted. Nola [low dose naltrexone] Parkinson's disease I am new to LDN and this group. I have been Diagnosed for 11 years but have had as the doctors think for an additional 15 meqaning a total ot 25 years and I am now 58 years old. About 2 years ago I had DBS and have had my stimulators for about 2 years. There was a 500% decrease in my dyskeneisas and I was able to start to enjoy life again. One thing that the stimulators do not do for me is help with my balance. In the last ten years I have gone from walking unasisted to using a cane, and now I use forarm crutches or a walker as I cannot walk with out falling.I have heard from some friends who have MS that this has helped them with there Mobility so I am going to try it and see what it does for me.Out side of Pardopa which I take for my parkinson's the only other prescription drugs I take are for my blood pressure and pain. Will see what this does for me and let others no the results.May God look out for all of his children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Welcome to the group, I've been absent from the group for a very long time, been doing so well with the ldn, I'm on the go and away from my computer all but occasionally to check in on the postings. Your post caught my eye because you mentioned prescription drugs for BP and pain. Please be aware of ldn's counter-indication with some pain meds, and check thoroughly your med before trying ldn. Opiots and meds such as oxycontin would make ldn dangerous unless you clear your system completely of these meds before starting ldn. Best wishes to all! > > I am new to LDN and this group. I have been Diagnosed for 11 years... > Out side of Pardopa which I take for my parkinson's the only other > prescription drugs I take are for my blood pressure and pain. Will > see what this does for me and let others no the results. > > May God look out for all of his children. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 I'm lost. What is it your trying for mobility? W2 --- Pat McGinnis <oldbold54@...> wrote: > I am new to LDN and this group. I have been > Diagnosed for 11 years > but have had as the doctors think for an additional > 15 meqaning a > total ot 25 years and I am now 58 years old. About > 2 years ago I had > DBS and have had my stimulators for about 2 years. > There was a 500% > decrease in my dyskeneisas and I was able to start > to enjoy life > again. One thing that the stimulators do not do for > me is help with > my balance. In the last ten years I have gone from > walking unasisted > to using a cane, and now I use forarm crutches or a > walker as I cannot > walk with out falling. > > I have heard from some friends who have MS that this > has helped them > with there Mobility so I am going to try it and see > what it does for > me. > > Out side of Pardopa which I take for my parkinson's > the only other > prescription drugs I take are for my blood pressure > and pain. Will > see what this does for me and let others no the > results. > > May God look out for all of his children. > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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