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    #16
    Originally posted by casey2u View Post
    Thanks for sharing, Jerry!

    I'm a little fascinated that you don't tell any of your other physicians about LDN. For example, you feel like LDN has helped with sleep problems, but you're not telling your sleep specialist: won't that get confusing/counter-productive? (no judgment, just curious). I imagine that you're worried they'll refuse to treat you or something?

    Having been on it for that long, you should be seeing all the effects you're going to see, if I read the literature correctly: are there other MS symptoms that it's not helping with?

    Thanks!
    Casey,
    I think Jerry meant that the naturopath is the only one of the group of doctors that was familiar with LDN and actually has prescribed it. All of this is very new and interesting to me as well. Good luck with your niece and please keep us posted. GinnyRuth

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      #17
      Originally posted by knuckle
      Keith - Here are two links that should help:

      Drugs To Avoid When Taking Low Dose Naltrexone

      http://www.webspawner.com/users/avoi...ldn/index.html

      LDN Interviews (including 129 people with MS)

      http://www.youtube.com/user/TheLDNresearchtrust

      Ask me any questions you want. I take LDN and have had MS for about 25 years. I've also taken Copaxone, Avonex, Rebif, Novantrone and Tysabri.

      Knuckle - I take Avonex. If I try LDN to I have to stop Avonex?

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        #18
        Casey,
        I have been remiss in my attention to this thread. But to the contrary, I share all of my medications and supplements with my entire team of medical practitioners. My cardiologist asked if I take it for pain. Which is not a primary concern. My PCP doesn't think it has any positive affect on me, but thinks LDN is relatively harmless. My neurologist has no idea what LDN does. It is a losing cause to explain to them at every consult. If it isn't a DMT, most of them could care less.

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          #19
          Originally posted by JerryD View Post
          Casey,
          I have been remiss in my attention to this thread. But to the contrary, I share all of my medications and supplements with my entire team of medical practitioners. My cardiologist asked if I take it for pain. Which is not a primary concern. My PCP doesn't think it has any positive affect on me, but thinks LDN is relatively harmless. My neurologist has no idea what LDN does. It is a losing cause to explain to them at every consult. If it isn't a DMT, most of them could care less.
          You are right about that JerryD. They are not trained in medicine like this. Plus the big pharma is in there offices all the time pushing their big drugs. I am waiting on a call back from my neuro about it to see if he even knows anything about it.

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            #20
            I got a prescription from my GP yesterday, I printed out lots of info and brought it in and she agreed to do some research on it. She really had no idea about it but seemed enlightened after some research. I hope LDN is the answer for me.

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              #21
              That is great Monkey. Please keep us posted as to how things go. Are you on a CRAB drug? If so are you going to discontinue it? I think the only CRAB that works with LDN is Copaxone.

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                #22
                Monkey72,
                Just to be sure you are getting what you think you are getting, you do realize that LDN needs to be compounded for you at a very low dose. Naltrexone is standardized/formulated in 50mg doses and needs to be 'shrunken' down by a compounding pharmacist.
                I am currently taking 4.5mgs daily, before bed. I started on 3 mgs daily for about 6 months. And it costs about $75 every 3 months, out of pocket.
                Don't expect to be 'cured' of MS with this drug. You will possibly find that you will sleep better and wake up more refreshed. You, possibly, will dream more often. I found that to be the case, myself.
                And if you do use this regularly, tell every doctor you consult that you take it ( and the dosage ) Good luck to you
                And GinnyRuth, good luck on your neuros return call. You will probably educate him/her. I gave my neuro chapter and verse. My degree is a B.A. He's the MD. I don't charge for the consult. He charges $400.00.

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                  #23
                  I've been on LDN since Sept. of 2011...almost a year. I can't really say it is doing anything. My symptoms have not really improved...my legs are still very heavy and the left foot drop is a bad as it's been.

                  I have to say I am disappointed. I had so much hope that this was going to help, but just like everything MS-works for some but not for others.

                  I am considering stopping it. My cousin wants me to start Protandim ( a natural supplement) that Montel Williams advocates. I think I am going to give it a try...can't hurt at this point.
                  Opiegirl, Dx 1991
                  Have never used DMD's.

                  LDN 9/2011-9/2012 & just started again 6/14
                  Estriol 9/12-present
                  Still Hopeful.

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                    #24
                    I've been taking avonex the past 3 months but I wasn't liking the way it was making me feel. Kinda just feeling down mentally and physically. So I decided to come off that and move onto LDN atleast until bg-12 is released. My doctor is starting me off on 1.5mg and then to 3mg.

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                      #25
                      Confused

                      I just saw my neuro yesterday and he suggested that I try LDN, but not as a substitute for a DMD. I've had a lot of fatigue and my provigil hasn't seemed to make much of a difference. He was suggesting its use in place of Provigil, to my understanding

                      I am currently on Copaxone, but have had 3 flares since last September. We also discussed the possibility of changing to another DMD. His suggestions were: Gilenya and Tysabri (he doesn't like Tysabri, though; it scares him). He asked me to look into these two alternatives before making a decision.

                      So...I guess my question is: Is LDN used in PLACE of more commonly used DMDs???

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                        #26
                        Here's my suggestion readingteacher...

                        Add LDN to your Copaxone as they don't conflict and give it a go for six months and then reassess how you're doing. Tysabri and Gilenya are pretty toxic drugs so maybe you don't want to give up Copaxone just yet. Quite a few people take Copaxone and LDN together.

                        Along with this I would add the following supplements every day:

                        Vitamin D3 - 2000iu daily
                        Curcumin - 900mg daily (make sure you buy it with "bioprene")
                        Alpha Lipoic Acid - 300mg once in the morning and once at night
                        N acetyl L cysteine (NAC) - 600mg daily (it is being tested to make Copaxone more effective)
                        N acetyl Glucosamine (NAG) - 750mg daily
                        Malic Acid - 600mg 3X daily before meals
                        Magnesium - 200mg 3X daily

                        Now the point of these supplements is to reduce inflammation and fatigue. You can do some research on them by googling each with "multiple sclerosis".

                        I wouldn't be surprised if after six months you're doing fine.

                        I get my supplements from Swansons online and my LDN from Skip's in Boca Raton, FL by mail order. I take all the supplements above and have used Copaxone and Tysabri in the past.

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                          #27
                          Knuckle,
                          Thanks. I'll do a little research and ask my neuro what he thinks of me doing that instead of just "switching." He told me about LDN because he heard about it from a neurologist at Hershey M.Center.

                          As for the other supplements you mentioned, I'm on many of them already. Used to be on magnesium, but keep forgetting to get some more (forgetfulness seems to be my middle name ). Some of them, I may have to check with my pharmacist to see if they interact with other meds I happen to be taking (some for MS sx; some for other reasons).

                          Comment


                            #28
                            LDN for infertility?

                            So I started on LDN and copaxone in early June. I have been doing really well on this combination. August 28th marked one year from my first and last flare. Just living and loving life.

                            I have a 13 year old daughter. Was never able to have more. Dont know why but just never happened. Two weeks ago, I took a pregnancy test and it was positive. Yes, thats right. 13 year gap between kids...

                            I called my Neuro and the nurse told me to stop both treatments because your body goes into remission when you are pregnant. I looked up LDN pregnancy and was surprised to find that they use it as an infertility treatment in Europe??? How did I miss this information when I did all the research before starting LDN?

                            I was just trying to find out if it was safe to use while pregnant because I feel a difference since I have been off. Anyone have any words of wisdom to share?

                            Comment


                              #29
                              I have been on 4.5 mgs LDN daily for about 2 years and I believe it has helped me get the sleep I needed, desperately. I don't know anything technical about LDN except it is considered an opiate antagonist. As far as endorphins act like opiates in the body, LDN acts as to regulate the production of endorphins which, I presume, are running amuck when one is suffering with MS.
                              Since I was told by many doctors that naltrexone, at this dosage, is relatively harmless, I would be more concerned with the harmful effects of the DMD's than I would be with the negatives of LDN. In any event, my first concern would be with your unborn child. I would suggest you consult with your medical team and let them be your guide. Good luck

                              Comment


                                #30
                                Carrie,

                                Here's an interview link from a doctor who uses LDN in his fertility practice:

                                http://www.youtube.com/user/TheLDNresearchtrust

                                I don't see how LDN could harm a pregnancy. It's totally non-toxic.

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