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    #31
    Hi all, I'm considering ldn after a 7 year stable period following mitoxantrone. My MS is now active after a car accident I was in 18 months ago..

    So I'm back researching next steps. It seems there has been a lot of research done in the last 6-8 years that support its efficacy, on pain management and the inflammatory process.

    A few questions, first, if I have it prescribed at 4.5 mg and made up at a compounding pharmacy, I it pretty straight forward if the pharmacy is a reputable one, or is there something special that needs to be done that is specialized?

    Second, using ldn in MS, are we using it to reduce inflammation, pain, and increase energy? That is what I'm looking for.
    If it is also used as a disease modifier great, but I think I will need a few more rounds of mito to stop this one in its tracks.

    Ps..Carrie , pls don't take ldn or any other supplement or drug not approved by your physician while pregnant. We just don't know enough yet about it to take the chance.

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      #32
      Hi SW,
      Sorry it has taken so long to address your questions but I’m sure if you have investigated the links at the beginning of this thread you already have most of the answers.

      There are just a couple comments I would make.
      LDN is used primarily to halt or slow disease progression, especially in MS, as evidenced by the results of a 2008 Italian study using LDN in PPMS patients. Only one patient on LDN suffered disease progression during that study.

      In human trials since 2011 LDN has proven extremely successful in treating Crohn’s Disease in children and adults. Also, LDN prevented the onset of AIDS in 71% of HIV+ patients in a peer reviewed MALI trial.

      LDN does not directly affect any disease; it affects the immune system which can fight many diseases which is unregulated as a result of using LDN. A properly working immune system is nature’s way of fighting disease and keeping us healthy!!! That is why so many people are excited about the future prospects of LDN.

      Unfortunately, it is a generic med and very inexpensive so no drug company wants to fund large studies and create a competitor for their profitable meds. I just read an article which said that Aubagio is the cheapest MS med at $45,000 per year. I don’t know about that but I do know some are paying $75 for a 3 month supply of LDN.

      Let’s not kid ourselves, no one is going studies for a med which will never allow them to recoup Phase 3 trial costs and become an alternative to profitable expensive meds.

      Lastly, I wanted to provide a couple links to a fertility doctor who uses LDN in his practice since Carrie asked. Most doctors are absolutely clueless about LDN so you have to dig into research on your own. But there is a lot available if you look. Anyway, here is the fertility doctor link, Carrie.

      Dr. Phil Boyle
      http://www.youtube.com/watch?v=zS8RdcvPMJY
      http://www.youtube.com/watch?v=IdDq9NcF7Tk

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        #33
        Originally posted by Myoak View Post
        Unfortunately, it is a generic med and very inexpensive so no drug company wants to fund large studies and create a competitor for their profitable meds.
        This is about to change.

        A company named "TNI Biotech" will be initiating a clinical trial for LDN and SPMS next year.

        Here's their website:

        http://www.tnibiotech.com/

        Also, there will be a LDN conference this October 5th outside Chicago at Harper College. More details to come...

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          #34
          My apology for writing a confusing sentence in my last post, I meant to say the immune system is “up regulated” as a result of using LDN, not unregulated. A properly functioning immune system is better able to resist disease. That is key to understanding why LDN is effective in several different diseases.

          Great news about the SPMS trial using LDN as a treatment! Pretty strange the MS society would not have found a way to do so years ago. Thank God for TNI Biotech, I think I’ll send them a donation.

          Keep us posted on the October 5 conference at Harper College, knuckle, and thank you!

          Comment


            #35
            Originally posted by Myoak View Post
            Pretty strange the MS society would not have found a way to do so years ago.
            Not really. The NMSS has always resisted LDN.

            I'll post the conference registration website pretty soon.

            TNI Biotech is building a factory in Nicaragua to produce a billion doses of LDN a year for primary distribution in Asia and Africa. They don't have to go through 10 years of FDA trials like the US does.

            Comment


              #36
              The LDN 2013 AIIC Conference is a charity event organised by the LDN Research Trust, which is being held at Harper College, Palatine Illinois on 5th October 2013.

              The conference reviews, compares and contrasts the most recent data and treatments for a variety of Auto-Immune and Immuno-modulated Conditions



              **registration website removed by moderator**

              Comment


                #37
                ok...go to "LDN 2013 dot com"

                Comment


                  #38
                  LDN and insurance

                  Does anyone know if LDN is covered by insurance ? I've been on copaxone for around 7 years or so. I'm ready to move on to something else. Checked out some of the newer oral meds and don't like all the side effects.

                  Thanks for any information you have.
                  Lynn, Proud Gold Star Mom of
                  Cpl Christopher W. Belchik
                  KIA IRAQ August 22, 2004

                  Comment


                    #39
                    Unlikely, because it is a compounded drug and used off-label for autoimmune disease, but it's very inexpensive.

                    I pay about $70 cash for 90 caps of 4.5mg LDN (three months supply) through Skip's Pharmacy in Florida delivered mail order. Skip's is probably the largest compounder of LDN in the country.

                    My neuro prescribes my LDN.

                    Some neuros do not know how to write a prescription for LDN - how to take it, dosage, where to get it filled, etc. They also sometimes get concerned if you ask for LDN as a DMD drug because it has not been approved specifically as a DMD for multiple sclerosis. Because there's no money to be made in LDN by big pharma, don't expect them to invest millions in the FDA-approval process.

                    Likewise, the National Multiple Sclerosis Society isn't interested in LDN.

                    If you encounter resistance with your neuro, consider asking for LDN for MS-related fatigue or depression as the endorphin rush from LDN helps with both conditions. Further, LDN is non- toxic, unlike most fatigue and depression meds prescribed for MS.

                    It's really no different Baclofen, Gabapetntin, Providgil, etc., that are all prescribed "off-label" for MS by neuros.

                    If your doctor is unfamiliar with LDN, the compounding pharmacists can help or visit LDNaware.org and there are some Fact Sheets posted.

                    Comment


                      #40
                      Originally posted by knuckle View Post
                      Because there's no money to be made in LDN by big pharma, don't expect them to invest millions in the FDA-approval process.
                      Not when they rack up numbers like this (#s taken from Wheelchair Kamikaze most recent post)


                      #1: Copaxone-$4.3 billion
                      #2: Avonex-$3.0 billion
                      #3: Gilenya-$1.9 billion
                      #4: Tysabri-$1.7 billion
                      #5: Betaseron-$1.1 billion
                      #6: Tecfidera-$876 million
                      #7: Rebif-$622 million
                      #8: Ampyra-$302 million
                      #9: Aubagio-$226 million
                      #10: Extavia-$159 million

                      I'm on LDN. 4.5mg nightly. $70 for a three month supply plus $5 or $6 (?) for shipping to CA from Skip's.

                      Comment


                        #41
                        Knuckle,

                        Thank you for all the great information about LDN. I attended the LDN Conference in Chicago last October and it was literally life-changing. The presentations from various US and European doctors were fabulous.

                        I met Dr. Burt Berkson, learned of his invitation, presentation and roundtable discussion with a panel of researchers and clinicians at the National Cancer Institute (NCI) in March of 2012. Berkson presented at NCI on his experience treating patients with alpha-lipoic acid and low-dose naltrexone for various cancers and autoimmune diseases.

                        Pretty remarkable that traditional doctors invited an Integrative doctor to address them at the National Cancer Institute. I never thought I would live to see that day!

                        I just returned from Berkson's practice in Las Cruces NM with my brother who saw him as a patient. I hope Berkson will present at the next LDN convention which is being organized for November in Las Vegas. There are too many suffering who have never heard of LDN.

                        The National Health Institute is currently supporting a clinical trial of LDN in breast cancer patients at the University of Minnesota and another cancer clinical trial at Duke University. I hope the NIH will soon fund a LDN trial for MS, for whatever reason the NMSS doesn't seem interested. Quite a mystery especially considering Dr. Gironi's successful Phase 2 trial of LDN for PPMS back in 2008 where only one patient experienced progression of MS during the trial.

                        Thanks again for making LDN information available for everyone's benefit.

                        Comment


                          #42
                          Interesting study titled, Low Dose Naltrexone Therapy in Multiple Sclerosis

                          http://academic.research.microsoft.c...cation/5564648

                          http://hauge.imaker.no/data/f/0/05/8...DNhypotese.pdf

                          Abstract

                          “The use of low doses of naltrexone for the treatment of multiple sclerosis (MS) enjoys a worldwide following amongst MS patients.

                          There is overwhelming anecdotal evidence, that in low doses naltrexone not only prevents relapses in MS but also reduces the progression of the disease.

                          It is proposed that naltrexone acts by reducing apoptosis of oligodendrocytes. It does this by reducing inducible nitric oxide synthase activity... It is crucial that the medical community respond to patient needs and investigate this drug in a clinical trial.”

                          Just amazing that researchers have been calling for clinical trials since at least 2004, the year of the above study but the NIH and MS disease charities have largely ignored those calls.

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                            #43
                            Amazingly sad. I saw that study as well.

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                              #44
                              Thank you, Knuckle, for the info on Skip's Pharmacy. I've been on LDN for about a year and a half and have been paying $50 a month at my local compounding pharmacy which is way more than I can afford. I should have checked this thread sooner. I've been doing well on it with the exception of recent itching/burning. I'm only on 2 mg. and should probably go up on the dose.

                              Comment


                                #45
                                You would think over the past decade that the NMSS could have managed to fund LDN research, but they won't, because if LDN was found to be just as effective, or more effective, than the big pharma first-line MS drug therapies all hell would break lose.

                                Several years ago in 2009 the LDN Conference was held in Washington, DC at the National Institutes of Health. We invited NMSS to attend but they said budget cuts wouldn't support the trip (they are located in NYC).

                                I offered to make a donation to pay for their travel and hotel, but they still refused.

                                Here we have an off-label use of a non-toxic, generic drug, not really different than many other drugs used for MS, like Baclofen or Provigil, with countless user experiences, scientific research, and small trials...and NMSS wants to have nothing to do with LDN.

                                So you can contemplate the ethics of that...

                                Same goes for vitamin D. Vitamin D, LDN, as well as Dimethyl Fumarate (Tecfidera) all regulate Tcell activity. LDN shows user experience efficacy across the same "autoimmune" conditions as Dimethyl Fumarate.

                                Both vitamin D and LDN generate Endorphins and Endorphins are Hormones that regulate Tcell proliferation. MS is a hormone-driven disease. Just look at the differences about how it effects men and women and by age.

                                I'm always encouraged about how many views this thread has achieved. Trying LDN for 6-9 months upon disease onset, seeing how you do, do you have another exacerbation, can quite possibly change the progression of MS. But don't expect the NMSS to be of much help because it's bad for business.

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