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    LDNers Updates??

    I've been on LDN since Sept of 2011. Stable MRIs so far. Most of my symptoms have improved slightly. A few new ones though...finger shocks...and neurogenic bladder.

    But other than that all is well with LDN. I am currently on 4.5mg pm dosing and I couldn't be more happy with my treatment choice.

    How are the rest of you doing??
    Love, Laugh, Live...in this order
    Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

    #2
    Me too. I've been on LDN since Sept. 2011. I got up to 4.5 but it was too high of a dose. My legs got really painful and stiff. I'm back down to 1.5 and feel so much better.

    I have no new symptoms since starting LDN. The other symptoms seem stable...foot drop, left hand numbness, but I haven't had an MRI yet since starting.

    I am happy with my decision to start LDN.
    Opiegirl, Dx 1991
    Have never used DMD's.

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

    Comment


      #3
      LDN

      ON LDN 3 MG SINCE QUITTING AVONEX. VERY HAPPY WITH DECISION. HAVE HAD MS SINCE JULY '92. MY STORY IS LONG, BUT I FEEL MUCH BETTER. WAS ON AVONEX SINCE '98-99? SOOOO GLAD TO QUIT NEEDLES. BIOGEN WON'T LIKE THIS BUT IT'S JUST THE TRUTH. ON THE WAY UP? DON'T KNOW, BUT I HAVE MY LIFE BACK. LDN HAS MY VOTE.

      Comment


        #4
        LDN rules

        Those endorphins are really working. After 4 years on Tysabri and another 8 on CRABS, now is the first time I really feel like my old self. 2 months on LDN, my weak right leg and arm are still there ofcourse but balance issues are a lot better as well as fatigue/drop foot. Afterall, this is the mechanism the new Biogen pill works also!!!

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          #5
          I think it's interesting that LDN has been shown effective in treating Psoriasis and that BG12 is a Psoriasis drug (Fumaderm).

          It's also worth noting that Malic Acid and Fumaric Acid have been shown effective at treating Psoriasis, Fibromyalgia, Rheumatoid Arthritis , Chronic Fatigue Syndrome, and probably some other autoimmune diseases.

          Evidently, Fumaric Acid Esters, BG12, has been used with Lupus.

          Sunlight/vitamin D helps with Psoriasis and Psoriasis is prevalent in the same areas of the world as MS.

          Apple Cider Vinegar, full of Malic Acid, is a home remedy for Psoriasis. You know what else helps with Psoriasis?

          Curcumin (Tumeric)
          Saffron
          Cayenne
          Cinnamon

          You know what all these spices have shown research promise for? MS

          What do Malic Acid, Fumaric Acid, Spices, vitamin D and LDN have in common? They generate endorphins.

          What do endorphins do? They regulate the immune system by normalizing T-cell function - those little nasties that eat your myelin sheath.

          Taking LDN + Malic Acid + Vitamin D + Curcumin looks like a good therapy to me.

          Comment


            #6
            Knuckle: I completely agree with you!! I take tumeric as well as a long list of other supplements. I haven't looked into the malic acid yet. What does that do? I do take the ala and alc is that enough?

            So happy for everyone who has found LDN and are enjoying the benefits of this treatment!!!

            It's just fabulous that we no longer have to poke ourselves and inject drugs!!!!
            Love, Laugh, Live...in this order
            Dx'd 2-24-11 - Baclofen 60 mg/day 5-11, LDN 4.5 mg/day 9-24-11, Cymbalta 60mg/day for pain 11-11

            Comment


              #7
              I stopped taking LDN during the first part of December because my script ran out and I wanted to wait until January when my health savings account was replenished again. So I went without it for 3 weeks.

              Towards the end my those three weeks my symptoms (leg weakness, foot dragging) were much worse. I was stumbling around a lot more than usual and couldn't figure out why until (duh!) I realized the meds I take daily were different.

              When I started the LDN again it didn't take long to get back where I was (which isn't great as I have PPMS and have limited mobility to begin with).

              Needless to say I won't do that again
              Steve

              Comment


                #8
                You want to take Curcumin, with Bioperene. Curcumin is an extract of Tumeric and adding Bioperene improves absorption. Curcumin is the substance that has been shown to block MS progression in mice. It's also been shown effective against colon cancer.

                Malic Acid is the precursor to Fumaric Acid in the Kreb's Cycle - the process by which our cells produce energy. The new Biogen BG12 drug is Dimethyl Fumarate, or Fumaric Acid Esters.

                Like BG12, or "Fumaderm" as it is known in Europe for treating Psoriasis, Malic Acid and Fumaric Acid also have demonstrated efficacy in Psoriasis.

                Malic Acid is found in the greatest quantities in apples and also in Apple Cider Vinegar. Apples have always been known to improve skin complexion and prevent wrinkles. Apple Cider Vinegar is a home remedy for Psoriasis.

                If you think there is a connection between MS and Psoriasis, which I do, and this seems supported by the efficacy of BG12 in both autoimmune diseases, then taking Malic Acid should be beneficial in slowing MS progression.

                The side-effect profiles of Malic Acid, Fumaric Acid and Fumaric Acid Esters (BG12) are similar (flushing, gastro discomfort, etc.). Malic the least toxic to BG12 the most toxic.

                Now if you think the reason for BG12 efficacy in MS is connected to endorphin production and endorphins modulate T-cell activity in the immune system, Malic Acid may just be a less toxic treatment versus BG12. For all we know, Malic Acid may work just as well as BG12.

                Malic Acid costs about $3 a bottle where BG12 will cost $3000 a month. I'd love to see an explanation of how exactly BG12 works and how that would compare to how Malic Acid works.

                Malic Acid, along with Magnesium, has been shown in a clinical trial of Fibromyalgia in middle-aged women to reduce pain and fatigue at doses of 1200-2400mg. What do many middle-aged women with MS complain of? Pain and fatigue.

                Pain and fatigue...now what decreases pain and increases energy? Endorphins

                So, I see no harm in taking Malic Acid 2-3X daily. I'm taking 600mg before each meal.

                Comment


                  #9
                  Knuckle,
                  I just found your post here and it looks like you and I are of similar mindsets. I just bought a small bottle of Apple Cider Vinegar and I intend to drink it , 2 tdsp at a time. Where do you get your Malic Acid ? Is it a pill ? powder? I assume you are finding it efficacious. I am PPMS dx'd 5/09. And every day I learn something new about this MonSter.

                  Comment


                    #10
                    I buy my supplements online at Swanson's. Malic Acid only costs $3 a bottle and you should take it with Magnesium. The Magnesium aids in absorption and supports nerve conduction.

                    They also sell an Apple Cider Vinegar supplement if you don't like taking the liquid.

                    I'm a supplement junkie so Swanson's is my dealer of choice for the following:

                    Vitamin D
                    B-complex
                    Magnesium
                    Calcium-AEP
                    Fish Oil
                    Flax Oil
                    Avacado Oil
                    Cinnamon
                    Cayenne
                    Saffron
                    Curcumin
                    Lion's Mane
                    Octacosanol
                    Alpha Lipoic Acid
                    Acetyl L Carnitine
                    N-acetyl Cysteine
                    N-acetyl Glucosamine
                    Alpha Lipoic Acid
                    Dimetylglycine
                    L-arginine
                    Gamma Aminiobuyutric Acid (GABA)

                    Told you I was a junkie.

                    But if you google each one of these supplements with "multiple sclerosis" you'll find that all have been researched to play a role in three areas:

                    Immune system health / Tcell regulation
                    Nerve / myelin health
                    Symptom management

                    I believe that while MS may be triggered by a virus, environmental event or genetics, it can be controlled by increasing endorphin production and strengthening the immune system - not suppressing.

                    Endorphins are hormones that regulate T-cells, the bad actors in MS as well as similar autoimmune diseases, like Rheumatoid Arthritis, Fibromyalgia, Lupus, Crohn's and Psoriasis.

                    One of the best ways to get endorphins is to spend some time in direct sunlight between 11-2pm with plenty of skin exposed, which is pretty hard to do, especially if you live in a darker, colder latitude of the world (which happens to be where MS, and Psoriasis, is most prevalent).

                    Your alternatives are vitamin D supplements, eating foods rich in vitamin D, like oily fish, which is a staple of Norwegians, Icelanders and Eskimos, all who don't get MS (or Psoriasis) despite they live in dark, colder latitudes, and LDN and spices.

                    Spices also produce endorphins and seem to have neuro-protective attributes. People who live in regions of the world where they eat a lot of spices rarely get autoimmune diseases. Curcumin, Saffron and Cinnamon are all currently being researched as MS treatments in mice. The scientists will extract the chemical compound, like Crocin in Saffron, add a molecule, patent it, run human clinical trials, FDA will approve, and charge you $3000 a month for it. It will have name developed by an advertising agency, brochures, conferences in Hawaii for doctors, and legions of sexy sales reps visiting neuros intent on meeting sales contest quotas so they can also go to Hawaii.

                    I think the way BG12 works, and Malic Acid and Fumaric Acid, is that when combined with vitamin D in the Citric Acid Cycle (Kreb's Cycle) of our cells more endorphins are produced. Hence, the connection between BG12 (Fumaric Acid Esters) and Psoriasis, and MS, and other autoimmune diseases Fumaric / Malic acids helps.

                    I suspect Biogen knows this and saw the opportunity of taking Fumapharma's Fumaderm drug and re-marketing it across the different autoimmune diseases, MS being the first. They'll run the FDA-required trials, give it a new name, run marketing campaigns, send out the sales reps, etc.

                    It's clever. No one can make Fumaric Acid Esters so you'll have to buy it for $3000 a month. But your health insurance company will be forced to pay for it, and premiums will go up. Biogen will give some BG12 away to those MSers who can't afford their new wonder pill and this will make Biogen executives feel better about screwing the American public.

                    Capitalism in America. Malic Acid costs $3 a month. Fumaric Acid costs $20 a month. LDN costs $30 a month. BG12 will cost $3000 a month.

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