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    #31
    Hi everyone,
    My name is JerryD. I have been following this 'LDN' thread for several years.
    I appreciate every word that you all have posted.
    I used LDN for 3 years, discontinued about 3 years ago. To get the drug, I found a website and went 'doctor shopping' until I found an MD/DO to write a script for me. I found that LDN had some benefits to my health, especially to my sleep patterns.
    Then I found a new MS specialist, who decided that I should discontinue LDN and try Lemtrada. That's what happened and I no longer feel that nasty threat of impending doom!
    I am very happy that some of you have found the benefits of LDN . Good luck

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      #32
      LDN

      Thank you for your kind words and encouragement Myoak. Many of us benefit from all of your research.
      Originally posted by Myoak View Post
      Thank you so much for responding, KittyCoCo!

      It's sometimes a little risky posting experiences outside the norm so I admire and congratulate you!

      The courageous are often rewarded and people like you who speak of personal experience often make the way easier for others to follow, if they are so inclined.

      It is interesting that you posted about improved social benefits of taking LDN because Dr. Jaquelyn McCandless used LDN quite successfully in hundreds of autistic children who often benefitted socially. There is a wealth of info about her work which can be found by googling McCandless -LDN - autistic children.

      Again, Kat, thank you so much for posting! Please know that you are in my thoughts and prayers and please know the love of God surrounds you like an ocean every moment of your life.

      Comment


        #33
        Originally posted by KittyCoCo View Post
        Thank you for your kind words and encouragement Myoak. Many of us benefit from all of your research.

        Dear KittyCoCo, you are so welcome for any small role I may have had in assisting your discoveries. I am absolutely thrilled you have found things like the Wheldon protocol and LDN which are improving your life and health! Yummy!


        And JerryD! I am so happy that Lemtrada is working very well for you! Thank you for sharing so often over the years. You are another who persisted until you found something that is working well for you!


        You both are wonderful examples of the diverse ways MS treatment can be successfully approached, with doctors and without them to a large extent. I congratulate you both! Way to go!

        Comment


          #34
          LDN to Lemtrada

          Originally posted by JerryD View Post
          Then I found a new MS specialist, who decided that I should discontinue LDN and try Lemtrada. That's what happened and I no longer feel that nasty threat of impending doom!
          I am very happy that some of you have found the benefits of LDN . Good luck
          Hi JerryD
          I've been taking LDN since 2006. It's the only medication I took for my MS until this past October when I did my first dose of Lemtrada. The LDN didn't stop my progression but it's been slow and my neurologist at the time felt it was on par with the other MS medications. I started seeing an MS specialist last year and he recommended the Lemtrada; although I am also still taking LDN right now. I was wondering how you are doing since you took the Lemtrada and how long has it been?

          Thanks and take care, Amy

          Comment


            #35
            I'm reviving this old post.

            I am, again, interested in looking for someone who would rx this. I had a conversation online this week with an Integrative Medicine doctor. She works with 2ndMD, a program that my insurance (through hubby's employer) works with. 2nd MD provides specialists to consult with, virtually, to give a second opinion. They don't rx or do any other treatment.

            I requested a doctor of Integrative Medicine, rather than an MS Specialist. I feel like I'm more interested in exploring alternative treatments since my MS Specialist already provides what I need in traditional care. She gave me some helpful suggestions that I can ask my MS Specialist about. One of those suggestions was LDN. My MS Specialist has already declined, in the past, to rx LDN for me. My 2nd MD doc plans to send me links to recent articles that have promising results. Perhaps she'll reconsider.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #36
              Originally posted by Mamabug View Post
              I'm reviving this old post.

              ... She gave me some helpful suggestions that I can ask my MS Specialist about. One of those suggestions was LDN. My MS Specialist has already declined, in the past, to rx LDN for me. My 2nd MD doc plans to send me links to recent articles that have promising results. Perhaps she'll reconsider.
              Although I reported about this on a different thread somewhere, I didn't ever update it here.

              After a lengthy discussion with my MS specialist about LDN at mu July appointment, she reluctantly agreed to rx it because ((sigh)) she believes it might have a helpful placebo effect for me. (Oh, well. if that's what convinced her, I'll take it.) I've been on it now for several months. I was rx'd 1.5 mg but I chose to start with half of that for the first month or so and titrate up.

              I think it's making small differences.
              - I notice it in going up steps being somewhat easier. My strength and balance seems better; I don't have to change hands for my cane, as I usually do. (ie: I require more support on my left side, so usually, when I went up stairs, I changed hands because the handrail offered more support than my cane.)
              - I also seem to do better at stepping off of a curb. Even with a cane in one hand, I often needed to hold on to a nearby car or post with the other hand. Now, my cane is enough.

              I'll keep using it to see if changes continue or increase.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment

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