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    #76
    Hi CaroleK,

    Thank you for your kind expressions and thank you for participating in the HSCT trial. You are courageous and I believe it will pay off.

    If MS has a viral cause then HSCT should work because most, and hopefully all, viruses get killed off before your stem cells are received back.

    If EBV and HHV6 (or any other virus) cause MS by getting HERV to replicate which begins the development of MS and you kill those viruses, perhaps that is all that is necessary to halt MS.

    Easy for me to say, “perhaps that is all that’s necessary” after what you’ve been through! Really, I have so much admiration for you. Everyone appreciates your willingness to share your experience with HSCT through your posts. I can’t thank you enough.

    From my point of view HSCT fits well with idea of an infectious cause for MS. I hope it works well for you. I believe it will.

    Comment


      #77
      Thanks again, myoak

      I'm rereading this thread, and myoak's comment about keeping an open mind and trusting that breakthroughs can come from small, unexpected, unheralded places, which reflects my values as well.

      I'm about to go on Gilenya, and after rereading all of this research, I think the drug dovetails with my gut feeling about what happened to me and why I have developed MS, and possibly what to do to fix it. So I have great hope that it will help.

      But I love holistic and natural remedies, too, and the cheap generics that are overlooked, anything and everything that can help my body deal with what's going on. I'm participating in the medical industrial complex profiteering grudgingly, and only until something better comes along.

      I get discouraged when people insist on their way, cheerlead for one drug or procedure over another. The only way forward with something as complicated as this disease is to welcome, respect, and explore ideas from every angle possible. It can't hurt, and can only help. This thread has given me a jolt, helped me feel positive and hopeful for the near future.

      I understand people trying to protect themselves from disappointment, but we have to try to manage those feelings so we can be ready to take another chance, and then another. Keeping an open heart means hope, and hope is the last thing to go (well, if I have anything to do with it).

      Comment


        #78
        Poppydarling,

        Thank you for re-reading and I am happy that hope is alive in you.

        I know you are struggling with your body's response to the MS meds. You are constantly in my thoughts and prayers as I am praying for you right now that God would bless you first with peace. May His love so envelope you that every fear would fall away and comfort soft as a silk pillow rest with your heart and mind. And yes, certainly, I am praying for the wellness of you body.

        I do hope Gilenya will work well for you. Your doctor is trying to find something which your body responds to.

        Gilenya is used by many doctors, especially in Europe, post-Tysabri. Often they have had good success.

        Enjoy the day. Blessing to you!

        Comment


          #79
          Blessings :-)

          myoak, I needed those good thoughts and blessings, so thank you from the bottom of my heart! And thanks for all the research and information presented here, which is been so helpful.

          Comment


            #80
            Hi Poppydarling,

            I don't have more to post on the Charcot Project right now but I am concerned about how you are doing, poppydarling.

            You know I am praying for you. I can't hug you but the Lord can. As you read this may waves of love flood over you, healing you, touching you inside and out. And somehow, the restoration of your health will begin.

            Good health will come to you again, poppydarling. Maintain yourself properly in diet, rest, and confidence during these times of stress.

            Thank you for your friendship. You are important to me, poppydarling.

            Comment


              #81
              Ebola virus and JC Virus have been treated with a new anti-viral medicine called Brincidofovir.

              The Dallas patient on Brincidofovir, Thomas Duncan, sadly passed away but perhaps the fact that Ebola was well advanced before he was finally diagnosed had something to do with not being able to recover.

              Other patients on Brincidofovir have recovered. Ashoka Mukpo an Ebola patient in Nebraska recovered on Brincidofovir. Also, Dr. Craig Spencer, the doctor currently under treatment for Ebola in New York is receiving Brincidofovir. All three of those stories can be Googled.

              Quoting the analyst in the article linked below, “Brincidofovir has been used to treat eight patients with JC virus, and has cleared the virus from two,” End Quote.

              http://www.ccrm.ca/sites/default/fil...ay05222014.pdf

              CCRM is a “Canadian, not-for-profit organization supporting the development of foundational technologies that accelerate the commercialization of stem cell- and biomaterials-based products and therapies.” The pdf is safe to click to click, IMO.

              Relative to the Charcot Project it is interesting that anti-viral meds are having limited, but notable, success in treating very difficult diseases.

              MS is a disease which will someday commonly be treated with anti-virals, IMO.

              The Charcot Project, which recruited 19 MSers for treatment with an anti-viral, will furnish evidence of effect.

              Comment


                #82
                I hope that this 'anti-viral' course will be the beginning of the 'end' of this MonSter'.

                Comment


                  #83
                  Me too, JerryD! The Charcot Project and the research around stem cell approach are the two directions that give me the most hope. They are actually the things that keep me going--believing that there are exit ramps on this road besides the one that leads to The Other Side. Especially for people like us who have PPMS, because I honestly don't hold out any hope for the meds that I'm on now.
                  PPMS
                  Dx 07/13

                  Comment


                    #84
                    [QUOTE=J-Bo;1464564]Me too, JerryD! The Charcot Project and the research around stem cell approach are the two directions that give me the most hope. They are actually the things that keep me going--

                    Charcot Project Update October 2015 from ECTRIMS

                    Quote “Although the aetiology of Multiple Sclerosis remains elusive, it is clear that Epstein Barr Virus (EBV) and possibly other viruses have a role in the pathogenesis of MS. Laboratory evidence suggests that a Human Endogenous Retrovirus (HERV) could have a role as a trigger or even be the cause of MS, but these data suffer from the lack of any interventional therapy that may assist in determining what will happen if HERVs are suppressed.

                    Recent epidemiological evidence indicates that patients with HIV infection have a significantly lower risk of developing MS and that HIV antiretroviral therapies may be coincidentally inhibiting an endogenous retrovirus or retroelements that are implicated in MS.

                    In order to further investigate this possibility, a 6 month Phase 2b pilot clinical trial was designed as a baseline versus treatment study to investigate the role of an HIV integrase inhibitor, raltegravir, in patients with active RRMS as determined by gadolinium-enhanced MRI.

                    The twenty patients who were enrolled had monthly visits for comprehensive assessment that involved a Gd-enhanced MRI, saliva collection for EBV shedding, blood collection for safety monitoring, virology, including HERVs; measurement of immunological and inflammatory markers, and physical, neurological and quality-of-life determination.

                    Patients were monitored monthly for three months as a baseline, followed by three months of treatment with raltegravir 400mg twice a day. All patients completed the six months trial period. This pilot study determined there were no serious adverse events and no withdrawals due to safety issues. The study drug was well tolerated.

                    This is first clinical study conducted with an anti-retroviral therapy in patients with active RRMS. The effect of therapy on the number and rate of development of lesions on Gd-enhanced MRI, markers of HERV activity and other outcome parameters are currently the subjects of final analysis and review.” End Quote

                    This small trial established the anti-retroviral drug raltegravir taken twice a day at 400mg was safe and well tolerated in people with active MS. Safety is a critical step in human trials which must to be established before organizing trials directed toward efficacy. The next trial is being organized and will be called, “ARTEMIS”- which stands for… Anti-Retroviral Treatment for Epstein-Barr Virus in Multiple Sclerosis.

                    Crowd funding will be sought to provide financial support for the ARTEMIS trial. This trial is unique… it has nothing to do with the goose that laid the golden egg… the management of MS, and the tons of money pharma makes from doing so.

                    The ARTEMIS trial is the next step in finding the cause and the cure for MS.

                    Comment


                      #85
                      Quote, "... it is clear that Epstein Barr Virus (EBV) and possibly other viruses have a role in the pathogenesis of MS. Laboratory evidence suggests that a Human Endogenous Retrovirus (HERV) could have a role as a trigger or even be the cause of MS"

                      B cells play a critical role in MS. Recall that B cells are where EBV and other viruses hide and influence HERV to replicate which begins the cascade of events resulting in MS, according to the theory behind the Charcot Project.

                      The fact that Ocrelizumab is highly effective by addressing B cells fits well with the Charcot Project hypothesis of an infectious cause for MS involving B cells.

                      Yesterday's press release by Roche noted outstanding results for ocrelizumab:

                      http://www.roche.com/media/store/rel...2015-10-08.htm

                      “These results redefine our understanding of MS by highlighting the central role of the B cell,” said Stephen Hauser, M.D., Chair of the Scientific Steering Committee of the OPERA studies and Chair of the Department of Neurology at the University of California San Francisco School of Medicine. “The findings may also encourage the MS community to look more closely at earlier treatment of the disease.”

                      The Charcot Project seeks treatment by using an antiviral drug to act on infected B cells.

                      I trust the importance of this project is coming more into focus by those interested in a cause (where it all begins) and cure for MS.

                      I trust the concept of an infectious cause for MS is becoming more of a distinct possibility to those willing to consider the puzzle pieces as we find them, some of those pieces are addressed in this thread.

                      The ocrelizumab news supports the premise of the Charcot project but more importantly, it promises to be an outstanding medicine, one hopefully approved very soon. FDA application is indicated to be in January 2016 and then 6 to 12 months, if FDA approves, before it would be available to patients.

                      Comment


                        #86
                        thank you Myoak for posting this update. I have missed your informative posts and am glad that you returned to update us on The Charcot Project. I hope that this is finally the breakthrough we have all been waiting for.

                        Comment


                          #87
                          This is very interesting to me....

                          I had mono twice as an adult (once in my early 20's and once in my 30's), and another time showed the virus as active (with no symptoms). My doctors always mentioned that mono comes from the EBV.

                          I wonder if this triggered MS in me.....
                          Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

                          Comment


                            #88
                            Myoak,
                            thank you for you informative post
                            I have missed you !
                            Linda

                            Comment


                              #89
                              "My doctors always mentioned that mono comes from the EBV.

                              I wonder if this triggered MS in me....."


                              There are some very good doctors who believe so but proving it has been a difficult task. But research pieces continue to be found which fit that theory.

                              You said it very, very well when you used the word "trigger". EBV lurks hidden in B cells and EBV triggers HERV replication, this much is known and it is scientifically indisputable. A chain of events involving improper immune response succeeds HERV replication ultimately resulting in MS, it appears.

                              EBV is one of the herpes family viruses and others in the group can cause HERV replication. It is interesting to me that the HERV viral particles replicate to the point of overwhelming proper cellular function resulting in metabolic dysfunction. Cells do not appear to clear the HERV quickly and it gunks up mitochondria's proper function. Thus, it would be logical that diets and supplements which assist mitochondria's function could be of value, I suppose.

                              On the medicine front there is a new drug being tested in human trial which addresses HERV called GNbAC1. The results so far are spectacular and I do mean spectacular. Of course, it is very early in development so we have to wait and see how it continues.

                              And, we have the anti-retroviral drug used in the Charcot Project which may have good effect, also, which will continue in trial when/if funding is secured.

                              I notice that you take Copaxone. That's good! But be sure you keep an eye on ocrelizumab. I can't stress that enough because it is so much more effective and it has a mathematically superior chance of benefit over the older MS meds like Copaxone. Keep it in mind; it may be available in about a year, or so.

                              Since you brought up EBV and EBV viruses hide in B cells this snippet from the Wall Street Journal about Ocrelizumab and B cells may interest you:

                              http://www.wsj.com/articles/roche-re...rug-1444325240

                              “Ocrelizumab, administered by infusion every six months, targets a protein called CD20 on the surface of immune-system B cells, which Dr. Hauser said trigger an inflammatory process that attacks myelin. His research has played a key role in identifying B cells as a major player in multiple sclerosis, a finding contrary to long-held beliefs about the disease.

                              Dr. Hauser highlighted one result as especially encouraging for the new drug. While acute relapses typically happen perhaps once a year in the relapsing form of the disease, magnetic resonance imaging studies have shown that bursts of inflammatory attacks on myelin are much more frequent, he said. In the relapsing disease studies, the drug reduced such bursts by 94% and 95% respectively, he said.

                              “This comes quite close to turning off inflammation” in the myelin sheaths, he said.”

                              Linda, you are a sweet, thoughtful lady.

                              Comment


                                #90
                                Multiple sclerosis patient walks after taking HIV drugs

                                http://www.bbc.com/news/uk-england-sussex-34659771

                                Shana Pezaro is a 36 year-old former dancer and piano teacher with MS who was given antiretroviral drugs. She said, “Three days after I took the drugs I walked up a flight of stairs. That was an unbelievable, massive change.”

                                This is another story which suggests the Charcot Project is on the right track. Please be mindful of expecting too much too soon. It takes a very long time to develop everything necessary to introduce a new disease treatment. We all hate that fact but we must acknowledge it.

                                That said, we are truly encouraged by Shana Pezaro’s experience. Hopefully, disease societies will show an interest and consider funding the trials necessary to establish whether antiretroviral drugs can treat MS successfully. Obviously, drug companies can't be expected to fund competitors to their drugs.

                                "...the anti-retroviral drug used in the Charcot Project... will continue in trial when/if funding is secured."

                                I do not know the exact drugs taken by Ms. Pezaro but I'm certain they are being looked at.

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