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    LDN

    I'm somewhat interested in experimenting with LDN as symptom management. I would continue to take my Copaxone 40.

    I've read, here, and other places, that it can help with fatigue and with urinary frequency issues. Has anyone here had positive results in those areas, or, with other symptoms?

    I talked to my MS Specialist about it this weekend, and she's not willing to rx it. She tried it, once, with another patient, for the same reasons I was interested, without success. I may try going through my PCP instead.

    But, I've also read that it can be ordered online without a rx? Has anyone tried that? I wonder, some, about how the quality can be guaranteed if it doesn't come through a regular pharmacy. But, I've also read that it needs to go through a "compounding" pharmacy, and there isn't one in my community. I'd have to drive 30 miles to pick up a rx.
    ~ 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.

    #2
    Hi Mamabug,

    I am not sure if LDN can be ordered online without an Rx, but I think the drug does need to be compounded to get the much lower dosage that is used for this treatment regimen.

    I have been taking a 3mg dose for ~10 months now and like you I am also using Copaxone 40. My neuro isn't convinced that it is proven helpful but is willing to prescribe it as she feels there is at least proof that it's very low risk.

    I don't know about urinary frequency issues; I haven't really noticed much difference there though that is not one of my primary symptoms. I do notice that it makes a difference for me in fatigue - or perhaps more specifically, in my ability to wake up in the morning when I need to. If I forget to take my LDN before bed I have that "brick wall" feeling when I wake up and I have a very difficult time dragging myself out of bed to get ready for work. If I remember to take my LDN before bed, I am more alert and can usually get the day started more efficiently.

    It's not a silver bullet; I still get pretty tired/fatigued throughout the day but overall I think the LDN helps me quite a bit; I'd be unwilling to give it up.
    Sx since 2007; Dx Oct. 2014. Started Copaxone after Dx...praying that it's working!

    Comment


      #3
      Thanks for the info. Good to hear that it helps with fatigue.

      I could see if my PCP would Rx it, but I'm not sure he would either.

      Wondering if anyone else has knowledge about if it's available online without a Rx. I thought I heard once that it was.
      ~ 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


        #4
        LDN

        I asked my Neurologist here in Missouri about it, and he said yes he does prescribe it, and would if I was interested in trying it. I haven't felt like I needed to try it yet, but good to know he will prescribe.

        Comment


          #5
          Hairstylist -- good for you. It's nice to know it's an option. I'm not sure, if it's a low risk med, why other docs won't consider it, even if they don't believe it's helpful.

          Originally posted by malaholic View Post
          ... My neuro isn't convinced that it is proven helpful but is willing to prescribe it as she feels there is at least proof that it's very low risk.
          ...
          ~ 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


            #6
            Mamabug,
            I have just stopped taking LDN 4.5 mgs, 1 time daily, about 2 weeks ago, on the suggestion of my neurologist. I started taking it when I found a 'naturopath' MD, about 3 years ago. It was a difficult search to find an MD that would prescribe it.
            Then, I found an 'MS specialist' that had no problem with prescribing the med. He began monitoring my blood levels and when my white blood counts began to drop, slightly, he suggested that I stop the LDN.
            I feel that it had a modest positive effect on my fatigue and attitude. I have had no negative side effects from taking it. I haven't had any bad reaction from stopping the drug, either. Good luck

            Comment


              #7
              Thanks for sharing your experience Jerry.

              My next annual appointment with my PCP won't be scheduled until April or May. Not sure if I'll make an effort to pursue anything until then. I suspect that my husband won't be supportive since my MS Specialist didn't want to rx it, and his occasional non-support is always stressful for me because he tends to be somewhat pushy when he has an opinion regarding my MS.
              ~ 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


                #8
                Neither my MS Specialist, nor my PCP, will rx LDN for me. I've heard that it can be purchased, online, without a rx, but I haven't been able to figure out if that is true. Also, I really don't want to buy Nalterone and compound my own, as I believe some people do. I'd much prefer to purchase the low-dose, already compounded.

                Does anyone know a source for that? If you'd prefer, my email address is in my profile. To find it:
                1. Click on my name
                2. Click on the About Me tab
                3. It's listed under URL's. My personal email address is the first URL.
                ~ 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


                  #9
                  I'm in MN, I asked Dr neuro about LDN and she had no problem giving me a script for it. After a few minute search on dr. Google, I found a pharmacy 1 hr away that would mail it to me. What's the saying?? ... easy peasy.

                  But, I haven't moved forward with it. I'm much more interested in medical marijuana than LDN. I feel the marijuana will offer better symptom management. But I haven't found a Dr in MN that will prescribe it ... yet.
                  Karen

                  Comment


                    #10
                    Originally posted by Mamabug View Post
                    Neither my MS Specialist, nor my PCP, will rx LDN for me. I've heard that it can be purchased, online, without a rx, but I haven't been able to figure out if that is true. Also, I really don't want to buy Nalterone and compound my own, as I believe some people do. I'd much prefer to purchase the low-dose, already compounded.

                    Does anyone know a source for that? If you'd prefer, my email address is in my profile. To find it:
                    1. Click on my name
                    2. Click on the About Me tab
                    3. It's listed under URL's. My personal email address is the first URL.
                    Hi Mamabug

                    I too have doctors that won't prescribe LDN.

                    There is at least one online pharmacy that I know of that doesn't require a rx for Naltrexone 50mg tablets, but can't find the low dose (2 - 4.5 mg) anywhere.

                    They say to dissolve the tablet in 50 ml distilled water, then use a dropper to dose your desired amount.

                    I'm very hesitant to buy it though.

                    I emailed the name of the pharmacy to you.
                    PPMS for 22 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      Thanks. Yeah. I don't know if I want to mess with distilling it. I might look into whether there is a neuropath around here. I've heard that they are more likely to consider prescribing LDN.
                      ~ 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


                        #12
                        I don't know much about medicine in Kansas, but I believe that you will need to use the heck of the internet to find a naturopath that can prescribe LDN. But in your search of the internet, you will find many mail order 'compounding' pharmacies that will fill the script. I searched 'compounding' pharmacies in my area. Then I called them on the phone and asked the pharmacist if s/he did this LDN. Then, I asked if s/he would tell me the doctor that prescribes the drug. It was my 'end run' approach to the solution. After a few years with my naturopath, I began to consult another neuro, an MS specialist, that agreed to prescribe LDN ! Good luck ! I hope that you find what you are looking for !

                        Comment


                          #13
                          faith, I am also interested in it for the fatigue factor. But neither my neuro nor my PCP will prescribe it either and there is no other options here.I will be watching this thread.
                          hunterd/HuntOP/Dave
                          volunteer
                          MS World
                          hunterd@msworld.org
                          PPMS DX 2001

                          "ADAPT AND OVERCOME" - MY COUSIN

                          Comment


                            #14
                            Hello Faith, Dave and All,

                            For many, the most convenient way to get LDN is to secure a prescription and have one of the reputable mail-in pharmacys fill it. I just googled "How to Obtain LDN" and read through Dudley Delany's material. It is reliable information.

                            Of course, the yahoo LDN discussion board has good resources, also.

                            As far as personal testimony goes... I have family members who have gotten prescriptions and filled those through the mail with no problems.

                            Also, have family members who buy the 50 mg tabs, crush and weigh to get 3 mg per capsule. Empty caps can be purchased online and an adequate scale costs $30-40 online. You can't by LDN online without a prescription at very many places online and where you can it is expensive relative to the 50 mg tabs. Overwhelmingly, online without a prescription only 50mg tabs of naltrexone are what is available. Since lots of place have these and naltrexone is very inexpensive there is no incentive to manufacture fakes. People counterfeit $20 dollar bills, not nickels. The bad reputation would affect their entire pharmacy business so there is no incentive to ruin the sell of more profitable items.

                            Naltrexone is very bitter to the taste. In several years I have not heard of anyone getting fake naltrexone online. Studies on counterfeit meds from overseas have been done but results are never published... Pharma would be plastering those results in every media non-stop if counterfeits were common. I am convinced the occurrence is rare. Plus, the large manufacturers in India are FDA approved facilities. They manufacture drugs sold at CVS, Walgreens, Rite Aid and other pharmacies. Why would they risk that trade? People reading this should look on their prescription bottles at the manufacturer and Google it... most would discover they are already taking a med from India if they are taking 3 or 4 different meds.

                            Pharma is not so ethical that they would refrain from paying journalists for scare stories to dissuade people from taking meds from India. What I need to see are peer-reviewed scientific studies proving the meds are fake but there are none. That tells a lot, IMO.

                            Liquid LDN is described below.

                            Since naltrexone is water soluble it is easy to crush a tab and dissolve it in distilled water. 50 mg in 50ml of water would yield 1 mg per 1 ml, obviously. 1 ml is not much water so you might want to dissolve 50mg in 150 ml of water to make measuring small amounts easier.

                            An oral pediatric syringe (this is not a needle but a device for giving a baby medication orally) can be purchased in any drug store. Ask at the counter and most drug stores will freely give you a brown medicine bottle (usually 180ml to 200ml bottle) with ml marks on the side of the bottle.

                            Liquid LDN, which is what was just described, is good for 60 days kept in the frig. Dr. Jill Smith said the FDA made her do stability studies for liquid LDN before using LDN in children with Crohn's disease. The FDA accepted 60 days and she conducted a very successful trial, btw. I discussed this research with Jill at a conference two years ago and have every confidence in what she had to say.

                            If this post makes it, I will post more about LDN. There has been recent research published which will be of interest, I believe.

                            Comment


                              #15
                              Thanks, myoak. Very helpful information. Now, the trick, since I don't wish to mess with the 50mg dose, is to find someone to rx LDN.
                              ~ 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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