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

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    #31
    I take LDN and no other MS drugs since 2007

    Originally posted by LillyMS View Post
    I just stopped taking MS drugs this Monday to give LDN a shot for 6 months. I am really concerned I might have made the wrong decision and being foolish? If anyone here takes only LDN for their MS and NO other MS drugs, PLEASE post here and let me know and how you are doing on it in regards to progression and MRI scans?

    I would be incredibly grateful for feedback on this. Thanks.

    I know my neuro would tell me I am CRAZY and give me a huge lecture, but I am not willing to go back onto toxic MS drugs at this time. I have tried avonex (did not work at all), tysabri (did work but I am JC+) and then tecfidera (gave me horrible side effects and leukopenia!!! ... and very concerned about increase of cancer risk).
    Hi there. I have been taking LDN - low dose naltrexone since 2007. I did try Copaxone for a very short duration in 2007/2008 but stopped using it pretty quickly due to allergy intolerance to it. I am hyper sensitive to pretty much any medication I have tried.

    At first I had to have it compounded but now I take it in liquid form 3mg at bedtime. I tried using 4.5mg but my spasticity worsened so I went back down to 3mg. I have NOT gotten any new lesions since early 2008 from being on the LDN.

    What I will explain quickly is that when they finally ordered an MRI in my case I had already been suffering with symptoms for 14 years. By the time I was taken seriously and they ordered the MRI, I already had a very heavy lesion burden in all areas of the brain and many of them are tumefactive sized larger than 2.5 centimeters, as opposed to the usual millimeter measurements. And then I have an on going area in my neck/cervical spine with lesions. When found, I was not actually having a lot of serious symptoms.

    The LDN has done its job in keeping any new lesions from showing up on MRI. I have had MRI's done every year and I would like to stop having them done except I keep coming up with new worsening symptoms in my 40's now and so my neurologist likes to make sure nothing new has occurred. What I believe is that I am basically "Paying the Piper" so to speak for all of that damage that was already there, its moved on to a neuro-degenerative state just by the sheer volume of it all.

    I now have a lot of chronic back, hip, leg and arm pain with a lot of weakness and worsening fatigue. But no new lesions. There aren't a lot of MS treatments that deal with progression of disability and from the research I have done in to the clinical trials and the labels of every MS treatment not one of them continues to treat progression of disability for any length of time. So I have stuck with the LDN because it has no side effects for me and is inexpensive, although I have great insurance.

    I had Neuropschological testing done. Well, the best they can do here in Nevada and they found below average in math now and a small processing issue. Otherwise I tested normal in all other areas.

    For me, the LDN has done what its supposed to do as far as lesion activity goes. I also go to great lengths to watch my diet, take vitamins and supplements, avoid MSG, GMO's, Artificial sweeteners and sugars, enriched ingredients and processed foods. I try to exercise but that's getting harder and harder to do. This year I have had every kind of blood work you can imagine to make sure I don't have rheumatoid arthritis or thyroid problems, both which run in the family. All of my testing came back totally normal. My vitamin D and B12 levels are both in the high normal range as well as every other blood test they did. I just wanted to rule out anything else that would attribute to the new symptoms, weakness, worsening pain and fatigue. But there isn't anything else.

    MS is such a strange disease. From the research I have done there are a number of people who no longer get lesions but still progress in to a different stage of the disease. I believe that is the phase I am in since I am fighting to keep my leg/s working now.
    Hugs,
    Danielle
    LDN'er since 2007

    Comment


      #32
      Hi LillyMS,
      I have MS for more than 10 years. I tried LDN and Copaxone at the same time for about six years. There wasn't enough change for me to keep using it. I've stopped all MS medication until they find a cure. The problem I have with the medication is the side effects of the medication are the same as the symptoms of MS. I had MRI twice and no more.

      I'm currently sugar free, gluten free, processed food free, use light salt with iodine. I take medication for depression and spasms to maintain a quality of life. There's no cure. I walk a mile a day. It's not pretty but it's a mile. I workout with weights as best I can. We need to be better than we ever have been. Everybody has something but they just don't it. This is ours. Get some sun everyday.

      Comment


        #33
        i am CIS since almost a year ago. i started lifestyle changes almost immediately. I did not have a good diet (and as I suspected wheat doesnt agree with me), didnt exercise, had very low levels of vit d, high homocistein, was very stresses and didnt sleep on average much more than six hours.

        I won't get into the debate on efficacy of the DMDs but one thing I had very clear from the start is that only the Swank study was able to reduce disability progression significantly and consistently. am I wrong?

        Comment


          #34
          As everyone is different, no one diet is going to be a cure all. I was healthy before and after MS and my disability *still* progresses.

          Comment


            #35
            Originally posted by misslux View Post
            As everyone is different, no one diet is going to be a cure all. I was healthy before and after MS and my disability *still* progresses.
            Well said. The same with those who tout a positive attitude as the main reason they are doing so great.

            In many ways when it comes to the course of our MS it is just dumb luck, imo.
            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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              #36
              lovetherams,

              Thank you for your input!!
              Live simply. Love generously. Care deeply. Speak kindly.

              Comment


                #37
                There is a wonderful YouTube video of Dr. Bahari you can find under the title, “Low Dose Naltrexone (LDN) Pioneer Dr. Bernard Bihari Talks”.

                From what Bihari states in this 1hr and 19 minute interview, LilyMS seems spot on. Bihari presents from having hundreds of patients on LDN. There is no reason to believe he lied. I see no reason to discount anyone’s personal testimony, whether doctor or patient. LDN is so cheap no one is making a fortune off it.

                Doubtless, some people have good results and some see no difference with LDN. I have spoken face to face with Linda Elsegood who had miraculous results with LDN. Thank God she is brave enough to speak-up about it. She can be found on YouTube, also.

                Danielle (lovetherams) what an outstanding post!!! Every MS treatment is probably helped with a good diet, good supplements, exercise, lowering stress.

                Dr. Jaquelyn McCandless was always fond of saying, “As usual, I need to emphasize that seldom is LDN a stand-alone treatment, but accompanies other strategies the body needs, especially a healthy diet.”

                It is always best hear direct testimony; thankfully YouTube presents that opportunity with Dr. Bahari.

                Ewizabeth said LDN, “just does not do what the Dr Bihari followers claim.” Yet, she offers no proof that anyone has given false testimony about LDN on this board or anywhere else, for that matter. But I understand what she means, I believe, if she meant that LDN needs more research beyond Phase1 and 2 trials.

                My brother just paid $53 for a 3 month supply of 3mg LDN from a well-known pharmacy in Florida. My wife just paid $14,101.95 for 3 months of Tysabri. Does anyone believe the maker of Tysabri, Biogen has any incentive to find out if LDN works by funding large scale trials ewizabeth and all of us want? How about any other MS drug manufacturer?

                May not see them in our lifetime. Small studies and thousands of anecdotal reports may have to suffice. That's why everyone's voice is important. Your's too, ewizabeth, I'm not beating up on you. You want to see solid evidence, so do I. Blessings to you and to all.

                Myoak

                Comment


                  #38
                  Originally posted by Myoak View Post
                  Ewizabeth said LDN, “just does not do what the Dr Bihari followers claim.” Yet, she offers no proof that anyone has given false testimony about LDN on this board or anywhere else, for that matter. But I understand what she means, I believe, if she meant that LDN needs more research beyond Phase1 and 2 trials
                  The onus is NOT on Ewizabeth (or me, or anyone else questioning the efficacy of LDN) to prove it doesn't do what people claim. The onus is on the proponents to prove the claims.

                  Comment


                    #39
                    Forgot to add, anecdotal evidence is not "proof" IMHO as there are so many factors to consider.

                    Even if Bihari had published prior to his death a spreadsheet of dates, patient ages, EDSS, meds, lifestyle changes, other details, etc. that would be better than scouring through a bunch of Youtube videos.

                    Comment


                      #40
                      LDN

                      I have only ever taken LDN. I was diagnosed with PPMS in 2007 and was in a steady decline until October 2009 when I started LDN. From this time my symptoms have not progressed and even some improvement in some areas.
                      Good luck

                      Comment


                        #41
                        Hi Ewizabeth.

                        I am not a researcher like you, but a graduate level course called Statistics for Research gave me enough knowledge to at least read a study intelligently. I am grateful to have my limited knowledge of this. Also grateful to be able to navigate PubMed. I have done plenty of searching on my own in the thirty years I have had MS.

                        I think there is room on this forum for something other than pure research. We are here to share experience, strength, and hope. Most of us take extra care to avoid claims for anything other than our own experience.

                        I can share my experience with MS drugs: Since my diagnosis, I have had several courses of Solumedrol, years of Avonex, Betaseron, and nine months of Tecfidera. When I was finally diagnosed in 1988, Solumedrol was about the only drug any neuro could offer me. I have been on LDN for six years now. Low dose: 3mg. Anything above that gives me increased spasticity. I know it increases my well-being. My urinary function is much better but I can't be sure it is from the LDN. I am 67 and still work part time in a family business, practice yoga four days per week, suffer from fatigue. All in all, I consider myself very lucky and I do believe LDN is part of that. NO research to support that. We're all just doing the best we can here.

                        Comment


                          #42
                          Thanks for your post TapDancer. I'm 61 and I am hoping that LDN will do for me what it's done for you. So far (year and a half) it has.

                          Comment


                            #43
                            Wishing you good luck with LDN, Lianne. Gave up Tecfidera because I was mildly nauseous most of the nine months. The Tec nurse was kind enough to inform me that Tecfidera was (anecdotally) hard on "the elderly". Ouch. Back to LDN. Fine with me.

                            Comment


                              #44
                              Tapdancer,

                              Thank you for sharing your experience. I don't want to discourage anyone from sharing their personal experience. Thank you for sharing yours. My only concern is for those who overzealously push medicines like LDN as DMT when they are not that at all.

                              I'm happy for your results with LDN and thanks for sharing your thoughts.

                              Who knows, there might be a time when I stop Copaxone and take LDN for symptom relief, but I will not now, or then push others to believe that it is in the class of DMT, because doing so can cause others to stop treatments that actually work or have been proven. A personal choice is one thing, but trying to persuade others to stop a clinically tested treatment for one that is not can be harmful for those not familiar with MS treatments and how they work.
                              Take care, Wiz
                              RRMS Restarted Copaxone 12/09

                              Comment


                                #45
                                Ewizabeth has not informed us of what Dr. Bihari’s followers claim.

                                Ewizabeth claimed that LDN, “just does not do what Dr. Bihari’s followers claim”. I agree with you misslux, the onus is on those making a claim to furnish evidence.

                                What evidence will you present, ewizabeth, of your claim that LDN does not do what “Dr. Bihari’s followers claim”? The first step is to please tell us what claims were made and then please present your evidence to the contrary. Neither does misslux identify what claims she is talking about. Please be specific, who made what claim and what proof do you have it isn’t true, misslux? Be specific.

                                There is a point here too important to ignore. It is tragic when hurting people are dissuaded from considering an avenue of possible relief because of unfounded statements. The thought of someone suffering needlessly should be sobering enough to demand accountability for what is said. No one is perfect, we all make mistakes, and we should forgive each other, learn from it and move on together in harmony once we recognize the harm.

                                I personally know PPMSers who have been sent home by their neurologist with no treatment option given, no suggestion of what has potential to help. LDN is one of the things which could have been mentioned but wasn’t. Sadly, a very vulnerable person possibly dealing with cognitive impairment is left on their own to figure out what to do or just suffer. This is tragic and intolerable. Conscience demands accountability on behalf of those who don’t or can’t speak up.

                                My goal and great joy would to become friends with you ewizabeth and misslux. You are deserving of all the good will and kind thoughts I could muster. Don’t feel picked on as we work toward understanding each other. Next time I’m going to address a NMSS “expert advisor” about an unfounded statement she made recently concerning LDN. Clarification helps everyone.

                                We are all still learning… you, me, and expert advisors, too. Knowledge is always growing we have to grow with it.

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