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    #16
    Still makes more sense to reboot the immune system.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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      #17
      The killing of EBV infected B cells in Gary Allen’s CNS by the method Pender used – adoptively transferred T cells – led to reduction of MS disease activity on MRI and by the decrease of intrathecal IgG production which is a marker for CNS inflammatory diseases such as MS. IMHO, it is a huge step forward toward treating all forms of MS by recognizing damage occurs from EBV infected B cells and designing a specific treatment to deal with EBV infected B cells in the brain.

      Basically, Pender removed blood from Mr. Allen, increased the effectiveness of virus fighting T cells by growing them with an EBV vaccine, infused Mr. Allen with his own treated blood, and produced dramatic results according to Mr. Allen’s testimony: http://patienttalk.org/killer-t-cell...r-ms-research/

      There is an ever accumulating weight of evidence which points to EBV infected B cells as an important factor in autoimmune diseases, including MS. Some of that evidence is presented in this thread through various study links.

      The possibility of a viral trigger to MS in those pre-disposed to the disease seems more likely viewing the results Pender’s MS Center had with this new treatment. It is Pender's belief that EBV infected B cells in the brain causes MS. His treatment was designed on that belief and it worked!

      It is tremendously exciting that Pender's treatment was effective in SPMS. Tremendously exciting that it suggests that treating EBV infected B cells is key to treating MS.

      Godspeed Charcot Project! Godspeed Michael Pender!

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        #18
        Opps, forgot to address the comment , "Still makes more sense to reboot the immune system."

        Not sure that it makes sense to reboot the immune system if you don't need to. The cost and mortality rate of rebooting the immune system by various stem cell transplant methods may be unappealing compared to options such as the oral anti-viral, raltegravir, or an IV such as the one that worked for Gary Allen.

        Remember, when you reboot the immune system the immunities built up over a lifetime get wiped out. For some the reboot has worked very, very well but others have died from doing so; about 3% to 5% mortality rate for some methods, I believe. A safer way to treat MS might be preferable for many. But as always with MS, there is room for all opinions and so very much work to do. There is room for all kinds of research.

        An EBV component to MS has been talked about for decades. It is fantastic to see an effective method dealing with EBV and MS evidenced by both MRI and decrease of IgG production. Truly, a notable breakthrough in the treatment of MS. Let's hope the Aussie's get the $400k they need for the next step.

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          #19
          Can't argue about the risk with you on that. I am still on the fence about reboooting but honestly, NOTHING else out there is close to what that treatment can do. This study will go nowhere.
          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

          Comment


            #20
            It wasn't a study. It was a human trial and it worked. The details are fascinating. The link below describes the theory (EBV infected B cells wrecking havoc in MS) and the treatment to counter it (transfer of EBV killing T cells):http://msqld.org.au/homepage/latest-...r-breakthrough

            For those interested there is a 7 minute radio interview with Pender in that link where he explains the success.

            Ask Gary Allen if he agrees with the notion that his treatment is "going nowhere". His improvement began with his treatment more than a year ago. From the comments Gary has made he is terribly excited about becoming better, as is his wife and children, I'm sure. Strange that anyone, especially someone with MS would want to discredit his personal testimony.

            The patient also talks about his cognitive improvement in a previous link provided. That kind of improvement could provide a huge boost to some of the comments made here, obviously.

            This treatment is recognized as a major breakthrough by MS organizations in Australia and I believe some MSers might be interested in it, even if you are not, Kate. Try being kind before making empty remarks lacking both credibility and common courtesy.

            If you aren't interested ignore the thread rather than attempt to discredit what Pender has accomplished for MSers by posting nonsense like " its going nowhere". The treatment already went somewhere; it worked. Anyone taking time to thoughtfully read the story would understand that fact.

            Other MSers may be interested so let's be gracious enough to allow it. Best to all. This is great news for MSers.

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              #21
              Myoak, I found out about Gary Allen before you posted, yesterday. I don't know more about his treatment or the state of the study that the Aussies are trying to establish. It could turn out to be a phenomenal accomplishment. I am eagerly following the developments of this. Keep us posted on this. Good luck

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                #22
                Myoak, Thank you for keeping us up to date on the Charcot Project. I find this research very interesting and promising for all of us. It is very exciting news to hear when someone who is at the progressive stage of MS recovers some of the function they have lost.

                I will be following the ongoing trials. I wonder if they will expand this to patients outside of Australia.

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                  #23
                  If it made that much of an impact SOMEONE would be doing here in the US. I am not trying to be a negative nelly here, just a realist. Remember CCSVI? There are a handful of cheerleaders posting on every board yelling praises how their life is improved etc... Where is CCSVI now? Every so often there is always some breakthrough, the real cure. Again, I wouldnt get put too much hope in this.
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                    #24
                    I am willing to be wrong. The way that I see it, since there is NOTHING approved as treatment for 'progressive MS', 'grasping at straws' is appropriate. I say 'throw it all against the wall' and see what sticks.
                    And the 'anti-viral' avenue seems to have some merit, as seen in Mr. Allen's case. Why shouldn't this avenue be investigated? If only 1 other person benefits from going the same route as Gary Allen, that's better than what is available at this time. Isn't it?

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                      #25
                      If you remember in the video, they said 8 years til phase I trials IF they can get the funding.
                      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                      Comment


                        #26
                        Katje, I get your point, and it's a good one. But I think Pender might be more credible than Zamboni.

                        To say someone would be doing it in the US is to misunderstand how recent this breakthrough is. Pender's results were only published a few days ago. It makes sense that he had the breakthrough in Australia because it supports a hypothesis he's been validating with various experiments for 10 years.

                        Unlike CCSVI, Pender's work aligns with what other researchers are finding regarding B cells and EBV.

                        My impression is that Zamboni was more out of left field.

                        All that said, I very much agree with you that we shouldn't get excited until the results have been replicated.

                        Comment


                          #27
                          No Katje, no one said “8 years til phase 1 trials”. The reporter said “a clinical trial which could take up to 8 years to complete” he didn’t mention “phase 1 trial” at all. Phase 1 trials are done to establish safety and dose, primarily, and often take less than two years. This reporter did an ok job but did not demonstrate (imho) that he possessed the knowledge of a researcher and unfortunately you misquoted him, anyway.

                          Some phrases not misquoted from the 2 minute video found at http://msqld.org.au/homepage/latest-...r-breakthrough
                          “Within two weeks the MS clock was turning back”.

                          And, directly quoting the patient Gary Allen, “Don’t have anywhere near as much fatigue, nowhere near as much pain, and I feel like I am much sharper and my memory is a lot sharper."

                          A couple more quotes, “Strength is even returning to his muscles”

                          and “Gary has just taken his first family holiday in a decade”.

                          The results of this treatment which acts on EBV infected B cells suggests several things which I will comment on in the next post or I’m afraid this one will be too long.

                          Comment


                            #28
                            Thank you, Mable for making several great points.

                            A few more thoughts about this:

                            Whether MS is caused by EBV infected B cells accumulating in the brain, or because of poor clearance of those infected B cells by cytotoxic T cells, or because of vitamin D as a part of the immune system that controls the body’s response to viruses is deficient; no matter how it is stated it all goes back to EBV infected B cells initiating MS in pre-disposed individuals, according to Michael Pender’s theory. The damage may occur by infected cells rather than by the virus directly, but by avoiding or killing the virus you could avoid and/or control the disease. But it is EBV which starts the chain reaction.

                            The possibility of a viral trigger to MS in those pre-disposed to the disease seems more likely than ever viewing the results Pender’s MS Center had with his new treatment. Also, consider this about two of the most effective MS treatments… Tysabri inhibits B lymphocytes from crossing the BBB and Gilenya sequesters B cells in the lymph system! Not just a coincidence, IMO. Bottom line… It is Pender's belief that EBV infected B cells in the brain causes MS. His treatment was designed on that belief and it worked!

                            Sure, there is a great deal to be done. But Pender's success opens so many possibilities. Such as the Charcot Project where the oral anti-viral, raltegravir, is being trialed in MSers. They still need 5 or 6 MSers living near London to fill out this small but ground-breaking trial.

                            Also, I will say that I have a family member who is taking 500mg of Pantothenic acid daily on advice from his doctor because he has an elevated level of EBV. I am not recommending anyone else do so. I have no idea if Pantothenic acid works for lowering EBV. Only in the opinion of one doctor, as far as I know, I haven’t researched it. Some may want to.

                            The excitement isn't because this new treatment is available now. It is exciting because it opens another avenue to treating MS and dovetails with a ton of research. Also, it offers explanation why Tysabri and Gilenya are effective in treating MS. They both help prevent B cells from getting in the CNS. Perhaps, other methods of dealing with virus-infected B cells will arise. Perhaps, in a simple and inexpensive med.

                            Drug companies understandably always act to protect their expensive meds. Patient interest will have to propel this treatment, or any, which uses no drugs or generics. If the pharmas and negative nabobs have their way, Pender's promising treatment will die on the vine.

                            I hope the Aussie's will be able to raise money for the next step. I will do what I can. A great number of small donations can make a big difference.

                            Comment


                              #29
                              The story of Gary Allen is very interesting to me. I think it should be followed closely for quite a while. It seems to be a promising direction in MS treatment. I am just going to have to wait and watch.

                              Comment


                                #30
                                I'm with JerryD

                                "Throw it all against the wall and see what sticks..."

                                I LOVE that. With a disease that has no known cause, many possible triggers and is completely different for every single person that has it, what else is there to do?

                                My head spins with the amount of info out there so thank you for the research into this topic, Myoak!

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