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Who here takes only LDN and NO other MS drugs? PLEASE post and let me know....

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    #16
    laurakim, it appears you have secondary progressive MS?

    tysabri didn't prevent new lesions from appearing on your MRI scans? That's a bummer

    I too, am curious who funded the trials?

    Comment


      #17
      ewizabeth,

      I don't believe that is accurate and not sure how you can make such a claim. Not sure where you got that information, but several would have to disagree (Dr Bihari for example would be one of them).

      Comment


        #18
        ewizabeth,

        Dr Bihari did find that LDN does stop progression of MS (shown on MRI scans). Please don't post such strong claims here when have have absolutely nothing to back it up and goes in contradiction to what many have experienced with LDN.

        Comment


          #19
          Originally posted by 1936siols View Post
          I have had MS since 1966. Back then there were no drugs for MS. They did have ACTH treatments which meant a week in the hospital hooked up to IV. It didn'y seem to help that much so I stopped them. Ever so often they would come out with a miracle drug that didn,t work so I quit all drugs. I am under the impression that most of the drugs they have now don't improve what you alread have which is long standing.

          I have lost the use of my legs, voice, body functions. I guess I feel there is not a whole lot more to lose. I cannot have MRI,s because of a pacemaker. I take no drugs. I do get the things normal people get like cancer but I guess I should feel lucky. MS no longer upsets me. I am happy.
          Thank you for sharing this.

          Comment


            #20
            Originally posted by LillyMS View Post
            ewizabeth,

            Dr Bihari did find that LDN does stop progression of MS (shown on MRI scans). Please don't post such strong claims here when have have absolutely nothing to back it up and goes in contradiction to what many have experienced with LDN.
            Do you have a comprehensive source for this? (e.g., Number of patients, timeframe, MRI intervals, type of MS, whether they were on other meds, etc.)

            Comment


              #21
              I have been taking LDN now for over six years as prescribed by my neurologist.

              I've had MS going on about 25 years and started on LDN following 18 infusions of Tysabri, a year of Novantrone, three years of Copaxone, three of Rebif and five of Avonex.

              I'm SPMS now, as expected. My personal opinion is LDN should be the first drug tried for MS upon diagnosis because it is non-toxic and inexpensive. Give it 6-9 months and see how you feel. I would also take Alpha Lipoic Acid and Curcumin along with LDN.

              Google: curcumin multiple sclerosis / alpha lipoic acid multiple sclerosis, if you are unfamiliar with the research being done treating MS with these supplements.

              If you want to hear testimonials of people with MS taking LDN, including mine, I suggest you visit the LDN Research Trust YouTube Channel where you will find many.

              Google: LDN Research Trust

              There is a company, TNI Biotech, planning to initiate clinical trials of LDN for SPMS later this year. Here is a link to an excellent article about the company and recent research:

              http://issuu.com/stocknewsnow/docs/m...57?e=0/5186032

              TNI Biotech is currently on a plan to produce a billion doses a year of LDN for distribution in Asia and Africa for autoimmune disease and cancer.

              Unfortunately, the only organization that seems the least informed, and least interested in LDN, is the National Multiple Sclerosis Society.

              Comment


                #22
                To add:

                This comment that LDN "is only for symptom management" reflects a lack of knowledge of the drug mechanism in relation to MS, other autoimmune diseases, some cancers and HIV AIDS.

                To begin understanding the science behind LDN this article from Science Daily is a good starting point:

                Low-dose naltrexone (LDN): Tricking the body to heal itself

                http://www.sciencedaily.com/releases...0902133047.htm

                Moreover, LDN is an oral medication, generic, inexpensive, and non-toxic, and has been documented to alter the course of both neoplasias and autoimmune diseases such as Crohn's and multiple sclerosis, making this drug especially attractive as a therapeutic agent.

                Comment


                  #23
                  Dr Bihari has no real data to back his claims, but continues to push LDN for his own benefit. If you can find real research data to support his claims I will read it but for the ten plus years that I have had MS and looked at treatments, he has been known as one who overestimates the claims of his treatment protocol.
                  Take care, Wiz
                  RRMS Restarted Copaxone 12/09

                  Comment


                    #24
                    This is starting to get into the sort of argument that gets no-one anywhere.

                    First off, the number of lesions on an MRI scan is not an absolute measure of MS progression, so to say that "Drug X" has stopped new lesions and therefore MS is totally fallacious. It is just as erroneous to say that because there are new lesions after taking "Drug X" that it has not worked. The standard DMTs (interferon based, and Copaxone) are claimed (supported by trial evidence) to reduce the number and severity of relapses. Nothing more, nothing less. That is why some people also take LDN as it has a reputation for the relief of some of the symptoms of MS.

                    Think about it, please. If someone is SPMS and is free from relapses, they may well choose to take LDN to alleviate some of the annoying symptoms that remain after the relapses have stopped. This does not mean that LDN has done anything for their MS. If someone is RRMS and has not had a relapse for a couple of years (which may well mean that they would have to pay for any DMT themselves as insurance and/or government will not pay), and take LDN to alleviate some of the annoying symptoms that remain, this does not mean that after another year or two without relapse, that the LDN has done anything for the MS - just that they have a very long period of remission.

                    As for TNI Biotech, and Dr Bihari - let's get the facts straight. TNI bought the patents from Dr Bihari for the administration of Naltrexone in low doses. They are building a plant in Central America to produce Naltrexone in low dosages and plan to organise a Stage III trial later this year. The last information that I saw said that it would relate to LDN as a possible treatment for Crohn's disease - not MS. Dr Bihari did suggest that many conditions may benefit from LDN, and MS is just one of them. This did not stop some people from jumping on the LDN band-wagon, but at the end of the day it still remains that LDN is still just a reputed treatment for the alleviation of some of the more annoying MS symptoms. I say "reputed", because there is only anecdotal evidence that it does anything at all - the trouble with MS is that we are all different and it is very hard to establish a baseline from which to determine any results.

                    G

                    Comment


                      #25
                      "Dr Bihari has no real data to back his claims, but continues to push LDN for his own benefit."

                      Since he's been dead now for about four years that may be a challenge.

                      If you go to the LDN Research Trust YouTube Channel there are several presentations by doctors who have experience prescribing LDN for years.


                      Also, there is quite a lot of information about LDN on Pubmed.gov

                      http://www.ncbi.nlm.nih.gov/pubmed/?...ose+naltrexone

                      **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

                      Comment


                        #26
                        I don't think believe that LDN is harmful but it just does not do what the Dr Bihari followers claim. I am only stating what I know from years of experience with MS and also from the background of a researcher. The claims are hugely inflated. Nobody should be lead to believe that it is a disease modifying drug or to treat relapses.

                        If you don't want to have educated opinions you should not post these questions. I am only telling what I know from my own research and experience. I am only trying to help those who might be lead to believe that this will replace a DMD.

                        If you want to try it for symptom relief it certainly won't hurt unless you have an allergy to one of the ingredients.
                        Take care, Wiz
                        RRMS Restarted Copaxone 12/09

                        Comment


                          #27
                          Originally posted by ewizabeth View Post
                          Nobody should be lead to believe that it is a disease modifying drug or to treat relapses.

                          If you don't want to have educated opinions you should not post these questions.
                          Well said.

                          Threads seem to become inflammatory when they deviate from the cheerleading and cyber hugs that people seem to expect here...however blind support does not encourage growth.

                          The way we continue to learn and grow is by sharing different experiences and feeling comfortable enough to add contradictory opinions and/or data. The posters I enjoy the most are the ones gracious enough to express appreciation for all input even if it isn't what they wanted to hear.
                          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                          Anonymous

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                            #28
                            I do, I take only LDN and have done so for the past six years and I'm sorry to say it has done NOTHING to slow down the progression. When I started I was very clearly R & R, five years ago it started to turn and has slowly but surely progressed to SP. When I started, I used no more than the occasional walking stick, now? scooter full time, both indoors and out.

                            I do not and never have taken any other meds. I try and deal with this monster through supps and vits, healthy living (no drinking/smoking) and a low fat diet. Despite it all, LDN included, I am slowly being eaten alive and there is bugger all I can do about it. You might ask why then continue with the LDN, my thinking is its better than doing nothing and who knows, maybe somewhere, somehow it is doing something.
                            Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

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                              #29
                              LDN

                              I am taking LDN and no other MS drug right now. I was on Betaseron for years but couldn't stand taking the shot anymore. LDN has helped me. My fatigue is much less. My balance and walking is better. I have only been on about two months and saw results almost immediately. Hubby is on it for Emphysema and he is doing better too.

                              Comment


                                #30
                                I take LDN and no other drugs. I've been taking it for a year and a half and I take 3 mgs. I've had RRMS since 1985 and I've never taken any of the DMDs for the same reasons that the original post mentioned. I haven't had a relapse since I started on the LDN and previously (since 2006) I was having them once a year. I still have some leg weakness and fatigue but I haven't noticed the spasms or stiffness since I started it. Also the dizziness is not nearly as bad as it was. I can still walk and take care of myself. I have not had an MRI since 2007, mostly because of claustrophobia, and also because I'd rather not know. So, so far, I think it's helping.

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