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    LDN Voices

    I've been asked by Sparky10 to re-post about a new DVD now available about Low Dose Naltrexone called "LDN Voices".

    It's a compilation of over 100+ interviews with researchers, doctors, pharmacists, and patient advocates (including me).

    The 2-part DVD is actually aimed towards doctors and is released as part of the third annual 2011 International Awareness Week (Sept. 12-18) and a LDN Aware Conference being held in Dublin. Lot's of MSers in Dublin.

    If you want learn more go to the home page of:

    www.LDNaware.org

    I'm not trying to sell anything. This is all being managed through a UK charity called the LDN Research Trust run by Linda Elsegood, who has MS, and doesn't make a penny yet works her heart out.

    So, if you or your neuro want to learn more about LDN from other doctors who prescribe it, the DVD may be worth your time.

    #2
    Thanks, knuckle.

    Sorry about the misunderstanding.

    Be well,

    Comment


      #3
      Ok now I am really confused, when I posted my neuro said that LDN was a good choice to take with LDN I had a lot of people say he was wrong and now this says it is ok, so who is right?

      Comment


        #4
        No problem Karen.

        Maximumlite, not sure I understand your question "LDN was a good choice to take with LDN", but the general opinion I've heard is that LDN is fine to take with Copaxone.

        LDN boosts endorphins 2-300% the day after you take it. Endorphins primarily enhance our immune systems by activating natural killer cells.

        Beta-interferon, like Rebif, Avonex or Betaseron, is an immunomodulator and the general opinion I've read is LDN could reduce drug efficacy if added.

        However, your question really strikes to the heart of Low Dose Naltrexone therapy.

        For years autoimmune diseases, like MS, Rheumatoid Arthritis, Fibromyalgia, Lupus, Crohns, Psorasis, etc., have been treated with immuno-suppressant drugs. These drugs are only partially effective at slowing disease progression and increased efficacy comes at the cost of increased toxicity. They are also really expensive.

        Yet, here you have LDN, which people report great success taking for all these conditions in the real world. In fact, lab science and human clinical trial data has been done with Crohn's Disease and Fibromyalgia that validates the real world positive results.

        LDN essentially turns the autoimmune disease model on it's head - that you can treat autoimmune disease, even some cancers, naturally by enhancing your body's ability to activate killer cells, not through long term immune-suppression or chemo.

        This is why doctors, neurologists in particular, are confused about LDN. They hear "LDN boosts the immune system" and they immediately assume that is very bad and goes against everything they've been told. Few make the effort in learning more about LDN because they are too busy. They are also afraid to prescribe a drug that has not been approved by the FDA for multiple sclerosis and don't know how to prescribe it.

        The amount of money derived from autoimmune disease drugs and ancillary services is mind-bogling. Just MS alone is a $10 billion dollar a year business. If LDN was found to be a more effective therapy - a cheap, non-toxic, off-label drug is more effective than Copaxone and the betainterferons (which are only 30-35% effective to begin with) - it would be a financial disaster for the companies who produce these drugs.

        The thing is, you've got thousands of people who have been taking LDN for their MS for years who report they are doing quite well. You've got LDN surveys and all these positive user experiences, and their doctors, that validates the lab science, the mouse studies, the human studies in other similar autoimmune conditions.

        Quite simply, LDN could be one of the greatest medical discoveries of our time, but will be very bad for the drug business.

        Comment


          #5
          This article was just published in the Society for Experimental Biology and Medicine:

          Low-dose naltrexone (LDN): Tricking the body to heal itself


          http://www.eurekalert.org/pub_releas...-ldn090211.php

          "Moreover, LDN is an oral medication, generic, inexpensive, and non-toxic, and has been documented to alter the course of both neoplasias and autoimmune diseases such as Crohn's and multiple sclerosis, making this drug especially attractive as a therapeutic agent."

          Comment


            #6
            Sorry I meant Rebif, when I went to see my neuro for which med I was going to take, I had LDN wrote down and he said that it would be a good choice to take with the Rebif, but when I asked everyone said no. But after reading on the site that it actually can help with Rebif reactions I will look into it as I believe you need a script or is that wrong?
            Thanks so much for the link

            Comment


              #7
              You need a doctor's script for LDN, though some people order 50mg Naltrexone tabs from overseas without a prescription and dilute it with distilled water down to 4.5mg.

              Most LDN prescribed in the UK is in liquid form while most in the US is compounded from Naltrexone powder and filler and put in capsules, by a compounding pharmacy.

              Here is a list of US compounding pharmacies who make LDN:

              http://www.ldnaware.org/ldn-info/101...emists-usa.asp

              LDN will definitely help you deal with Rebif-related fatigue and depression.

              Comment


                #8
                I just came back from a new doctor who suggested LDN. After being diagnosed with MS for 5 years this is the first I've heard of it. I was a little skeptical but after researching online and reading the posts here I'm feeling more positive about it. I'm currently on Copaxone. Is it OK to stay on both?

                Comment


                  #9
                  Starting LDN tomorrow!

                  Thanks to you Knukle, I am starting LDN as the first MS medicine I've ever taken. I've had MS for 20 years and it wasn't until I joined this site did I EVER hear of LDN.

                  My neuro at the RMMS center wouldn't even talk to me about it. My family DR. didn't know anything about it, but I didn't let that stop me. I looked in the phone book and found a compounding pharmacy 50 miles away, called them and asked if they had any Drs. that Rx LDN.

                  I found this great Holistic Neurologist in Denver. I had never heard of a holistic neurologist....but she is the best Dr. I've ever dealt, worked...(what do we do with our Drs.?)and there has been a lot!

                  I have never bought into the DMD theory and the efficacy statistics and side effects are not that good.

                  I am hopeful that I will see improvement of my symptoms. (numb left hand, and left leg heaviness, foot drop)

                  So, thanks for making me aware of a treatment that I had no idea about!
                  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


                    #10
                    It is OK to take Copaxone and LDN. In fact, I think that makes for a pretty good strategy under the theory that Copaxone provides a disease decoy and LDN regulates the immune system through endorphins.

                    You may also want to consider taking Alpha Lipoic Acid (ALA) as a supplement and Curcumin. For more information, google:

                    alpha lipoic acid multiple sclerosis
                    curcumin multiple sclerosis

                    The combination of LDN and ALA has been shown very effective at treating autoimmune disease and some cancers. Here is a great presentation on how the two work together:

                    Dr. Burt Berkson Presentation on LDN and Alpha Lipoic Acid Therapy for Cancer & Autoimmune Disease

                    http://glasgowldn2009.com/2009/04/ld...erence-video3/

                    Curcumin, a compound found in the spice Tumeric, is being extensively researched for it's anti-inflammatory and cancer-fighting properties. People in SE Asia, where they eat lot's of Tumeric, rarely get MS. The properties in many spices - Tumeric, Cayenne, Cinnamon - all seem to help against auto-immune disease. Cinnamon is now being studied in the MS mouse model.

                    When you consider MS is largely a "western disease" and westerners don't eat a great deal of spices historically, there may be something to the idea that spices can protect against MS.

                    Good luck opiegirl and Ella43.

                    Comment


                      #11
                      I want to encourage others interested in LDN with our story.

                      My DW was DX in January of 76, as the years went on she was not displaying the "common" symptoms of MS. In 89 we noticed my children and I that something was wrong with her. Something seemed wrong with her mind and thought process. We finally got the right DX for her in 09, her form of MS is the rarest one out there, MS Dementia.

                      I learned about LDN fron another person on the forum, and did my research on it. After a 6 month battle we finally got a Neuro to try her on it starting out with 3.0mg.

                      Within 4 months her heat fatigue had improved greatly. My DW also suffered with Dysphasia,( looking for the right word or words, having to stop and think about what she was saying ) that vanished.

                      The best part was in her MRI's one taken before the LDN treatments started, there was NO CHANGE, no increase in plaque in her brain. It didn't get better but it didn't get worse and to us that was a victory.

                      The point I'm trying to make is if your looking for another option to treat this "monster" and thinking about LDN, GO FOR IT!!! You have nothing to lose, and might find a whole lot of gains.

                      I also must say to Knuckle, THANK YOU. You are the most knowledgeable person out here about LDN, and I applaude your work here to help get the word out about this drug and the help it can bring to others.

                      Comment


                        #12
                        Thanks for all the info knuckle. VERY helpful and definitely something I'm going to pursue.

                        Comment


                          #13
                          LDN TOPIC, THANK YOU KNUCKLE

                          THANK YOU FOR POSTING. THERE ARE SEVERAL OF US MS'ERS THAT ARE UNABLE TO TAKE ANY OF THE CURRENT DMD'S. THIS I HOPE WILL OPEN THE DOOR FOR US.

                          I AM LOOKING FORWARD TO TALKING WITH MY NEUROLOGIST ABOUT THIS IN THE NEAR FUTURE.. JUST HAD A 3 DAY IV SUPERJUICE... FOR MY ONLY COMBAT FOR THIS DISEASE..

                          SOME DAYS YOU JUST WANT TO FEEL BETTER, I DONT THINK THERE IS ANYTHING WRONG WITH THAT, I DONT THINK THATS TOO MUCH TO ASK FOR EITHER.. I OPEN MY CABINET AND SEE THE ARRAY OF RX'S.. AND I HAVE TO ASK MYSELF.. WHY.. WHY SO MANY..THIS CANT BE GOOD FOR LONG TERM.. JUST IMHO...

                          THANK YOU AGAIN FOR THE INFORMATIVE INFORMATION. KEEP UP THE GOOD WORK!

                          OMI

                          Comment


                            #14
                            Will get on LDN ASAP

                            Thank you for your informative posts on LDN. You posted this just after my long winded post requesting advise on what I should do next to fight my MS. My options are Ty, G or do nothing! Been there, done that with CRAB's.

                            My new doctor did suggest LDN for me (as well as DMD's) and gave me literature to study then I came on here and learned even more.

                            I've put a call into my doctor requesting a prescription. I am very hopeful and excited to try it today
                            DX 1988. Avenox for 6 years, Copaxone for 6 years and LDN for 3 years.

                            Comment


                              #15
                              Glad it helps.

                              Here is something anyone interested in LDN should read - a transcript of an interview with Dr. Bernard Bihari, who is largely credited with the discovery of LDN and died last year.

                              Dr. Kamau B. Kokayi Interviews Dr. Bihari
                              September 23, 2003
                              WBAI in New York City

                              "Global Medicine Review”

                              http://www.lowdosenaltrexone.org/gazorpa/interview.html

                              Comment

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