Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Hi There - I have no answers for you, but didn't want you to feel ignored. I understand your depression (have some of my own since I too seem to still be progressing) and want you to know you are welcome to post here, or write me direct. Sorry I don't have any answewrs, but hope someone has some suggestions for you - Cinders allentownusa@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Thanks for your replies. I am taking it around 10PM. Maybe 4.5mg of LDN is not " low " enough for me, I will try that. What is DL-Phenylalanine? > Are you taking it after 9PM and before 3AM local time? Did you try 3.0 MG? How about DL-Phenylalanine 500 MG around 8-9AM in addition? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Are you taking it after 9PM and before 3AM local time? Did you try 3.0 MG? How about DL-Phenylalanine 500 MG around 8-9AM in addition? That's all I can come up with. Sorry to hear. I hope you figure something out. [low dose naltrexone] no response to LDN Hi,I am from Poland (I was diagnosed with MS in 2000), and I heard aboutLDN about two years ago. I decided to give it a try, and I arranged togo to New York to see Dr Bihari. He prescribed LDN to me and I got themedicine from Park Irmat Pharmacy in NY. I was taking it for sometime, I even got some refills by mail, but unfortunately, I did notnotice any effect on me whatsoever. I kept lookin for any symptoms or evennegative side effects which you all mention, but there was nothing. Idecided to go to 9 mg (two pills), but that had no effect either. Ihad very high hopes, especially about my bladder and incontinenceproblems, because I read many stories that LDN helped precisely withthose. Now I am really down, and I do not know what to think about it.Could it be that the pharmacy I am using is "cheating" and giving mesome harmless but useless powder, or am I simply in the 30% for whomLDN does not give positive results. Someone wrote here recently (quote):> > DuPont (mftr of naltrexone) HAS, however, put out information to> > people with MS on how to most effectively take LDN FOR MS.Can anyone, please, tell me where I can find more information aboutthat. Perhaps, I am doing something wrong with the way I am taking it.I realize that my message is rather discouraging, and not exactly inthe enthusiastic tone of this forum, but I would appreciate it verymuch if it was not completely ignored. I need some advice.Best regards to you allJerzy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 I am not sure if the question is only for Cinders, but I will respond anyway. I was taking it for several months in 2003 andhave not noticed any results (neither positive nor negative. My version of SM is not relapsing-remitting, but stable to very slowly progressing, so I cannot tell whether LDN reduced the frequency of relapses. I stopped taking it at the beginning of last year because I decided to try cord blood stem cell infusion, and I did not want to mix those treatments. The stem cells did no good either, and I actually felt worse as a result of the pre-treatment and the subsequent diet regime. I was not supposed to eat anything really nutritious for three months in order to promote cell proliferation, but I only lost a lot of weight and strength (I was slender and quite fit before that). Jerzy > Hi Cinders, > > How long have you been taking LDN? What kind of improvements and > progressions have you noted? I hope you don't mind my questions. I am just > trying to compile information for my husband. He has been on for 1 week > now. More energy, less overall depression, but depression is still there as > he still feels his numbness and tingling. > > Thanks > Aletha > > > > > [low dose naltrexone] Re: no response to LDN > > > > > > > > Hi There - I have no answers for you, but didn't want you to feel > > ignored. I understand your depression (have some of my own since I > > too seem to still be progressing) and want you to know you are > > welcome to post here, or write me direct. Sorry I don't have any > > answewrs, but hope someone has some suggestions for you - Cinders > > allentownusa@h... > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 Number 1, LDN does not guarantee symptom improvement. LDN's MAIN PURPOSE is to HALT MS progression and if one does experience symptom improvement, then that is an added plus. Number 2, if you keep progressing on LDN and have progressed on the CRAB's too seriously consider seeing a Lyme Literate Doctor. You may have been misdiagnosed. Lyme can mimmick MS 100%; in MRI's and lumbar puncture also. Lyme literate docs run the proper Lyme tests and regular docs don't and can miss the disease. Some people here have found they have Lyme after going on LDN and continued to progress. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 --- In low dose naltrexone , " japiotrowski " <japiotrowski@w...> wrote: The stem cells did no good either, and I actually felt worse as a result of the pre-treatment and the subsequent diet regime. I was not supposed to eat anything really nutritious for three months in order to promote cell proliferation, but I only lost a lot of weight and strength (I was slender and quite fit before that). > Jerzy > ============= Jerzy Since the stem cells didn't work get yourself tested by a Lyme Literate doctor. You may not be dealing with an auto-immune disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 --- In low dose naltrexone , " japiotrowski " <japiotrowski@w...> wrote: The stem cells did no good either, and I actually felt worse as a result of the pre-treatment and the subsequent diet regime. I was not supposed to eat anything really nutritious for three months in order to promote cell proliferation, but I only lost a lot of weight and strength (I was slender and quite fit before that). > Jerzy > ============= Jerzy Since the stem cells didn't work get yourself tested by a Lyme Literate doctor. You may not be dealing with an auto-immune disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 , I just had a few questions, about your post. With my personal experience, I did get symptom relieve by taking LDN. But my MS did progress, I have the MRI's too prove it. My main question was on your comment on Lyme disease, you say that it mimmicks MS 100% even on MRI's. Could you point me toward a website that says Lyme disease show's lesions on a MRI of the spinal cord. Mine are all on the spinal cord, except for the last MRI which showed white matter on the brain also. I know for positive that the ones on the brain occured while taking the LDN. I also just started Tysabri with two times done, but after this last time, my feet and hands felt more numb then before. That's why I'm questions the MS dx, but I can't find the info about Lyme that says is produces lesions on the spine. I also live in Nebraska, and based on the CDC map, we are not in a high probability area for LYME. My friend live in CT, which has Lyme, and we both got our first symptoms while visiting yellowstone, me in 2000, and him in 2001. He says he doesn't have lesions on an MRI either. Please respond to me directly or the group. > > Number 1, LDN does not guarantee symptom improvement. LDN's MAIN PURPOSE is to HALT MS progression and if one does experience symptom improvement, then that is an added plus. > > Number 2, if you keep progressing on LDN and have progressed on the CRAB's too seriously consider seeing a Lyme Literate Doctor. You may have been misdiagnosed. Lyme can mimmick MS 100%; in MRI's and lumbar puncture also. Lyme literate docs run the proper Lyme tests and regular docs don't and can miss the disease. Some people here have found they have Lyme after going on LDN and continued to progress. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2005 Report Share Posted January 19, 2005 -- [low dose naltrexone] no response to LDN Hi,I am from Poland (I was diagnosed with MS in 2000), and I heard aboutLDN about two years ago. I decided to give it a try, and I arranged to, I am doing something wrong with the way I am taking it.I realize that my message is rather discouraging, and not exactly inthe enthusiastic tone of this forum, but I would appreciate it verymuch if it was not completely ignored. I need some advice.Best regards to you allJerzy I hope we can all say that this is not a forum where being ignored happens a lot, I have not found us to be standoffish at all. Anyway I believe in the power of good eating healthy foods make healthy bodys right? So saying that I have engaged on a program of such and have benefited muchly. Could diet be a part of why your not seeing good results? I read many forums and one common factor in M.S. is our greasy transfatty acid diets. It seems a coastal fish type diet would be in our favor. Reg. Quote Link to comment Share on other sites More sharing options...
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