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    #46
    Hi George,

    Thank you very much....I am so grateful for your "long-winded" response....it is very valuable to me and I hope to others.

    I am very excited for the 3 others who will be getting the HSCT you have been describing. If you / they would keep us posted on where to follow progress....much appreciated. I wish them all the success you have experienced and more....GO FOR IT!!!

    Thank you for the invite George and I will send you an email soon. Yesterday we put our 2nd floor condo (no elevator...only stairs) on the market so will be putting time & effort into that for awhile.

    Best to all.....Brad

    Comment


      #47
      Hey George - sorry for the delay in replying - I think that a post from the wheelchair kamikaze's blog might be what my neuro was referring to...

      HSCT, a stem cell treatment in which a patient's immune system is completely destroyed through the use of chemotherapy drugs, and then "rebooted" by transplanting their own bone marrow derived stem cells back into the patient, has been shown to curtail disease progression, at least in some patients, over the course of a recently released 11 year study (click here). Patients with active inflammation fared best, with 44% of them showing no progression after an average of 11 years. Only 10% of patients without active inflammation (enhancing lesions) saw such success.

      On the downside, two patients (of the 35 study) died as a direct result of the immunoablative chemotherapy used in the regimen. However, in the decade plus since this study was started, the chemotherapy regimen used to ablate the immune system has been refined, and recent mortality figures are almost nil.

      In addition to a halt in progression, some of the patients did see their EDSS scores reduced for a time, but eventually regressed. After three, four, and five years the progression free rates of the treated patients were 80%, so it does appear that the effectiveness of the treatment diminishes with time.

      To my mind, these results raise a fair amount of questions, as they would seem to indicate that the underlying cause of MS is not dealt with even when the immune system is completely destroyed and then rebuilt from scratch. Whatever it is that causes MS, whether it be vascular abnormalities, smoldering viral or bacterial infections (such as EBV, chlamydia pneumonia, or HHV-6), environmental toxins, genetics, or, more likely, a combination of all of the above, is still at work, and eventually causes the immune system to go on the attack once again, at least in over half of the patients studied.
      That doesn't seem that much more effective than campath to me

      Comment


        #48
        Not a cure - yet

        Considering the invasiveness of the SCT with Chemo, I am glad that I opted for SC treatment via Slavin in Israel. The beginning of that protocol is similar. Extract bone marrow from your body, clean it, do some patented thing to it, and put it back into your body via a lumbar puncture. I have benefited from this treatment, but the Dr.'s have never called it a cure. It is the most effective treatmet I've had to date.

        I know that I'll likely start to progress again in the future, but I will happily go do a second treatment. Next time, I hope to avoid going in July! That was worse than the actual procedure.

        Comment


          #49
          Originally posted by batman12 View Post
          Hey George - sorry for the delay in replying - I think that a post from the wheelchair kamikaze's blog might be what my neuro was referring to...



          That doesn't seem that much more effective than campath to me
          Thanks for sharing The Wheelchair Kamikaze's comments, Batman12. Appreciate it!

          It's interesting that he makes mention regarding the HSCT mortality rate and inability to stop MS disease activity from the very old early phase I trial data from more than a decade ago which no longer applies because TBI was used as a protocol way back then and is responsible for the deaths. However, today TBI is no longer used in the trials with the evolved (gentler chemical only) protocols without sacrificing curative efficacy. As of today in the phase II and the (ongoing) phase III clinical trials there have been zero deaths. Absolutely none. And on top of this, 100% of the RRMS treated patients have had their disease activity completely stopped and 80% have had "substantial" symptomatic improvement (as measured by EDSS). It seems to me it would be quite hard to beat these numbers.

          Neither Campath, or any other single-agent can even come close to this HSCT efficacy rate, as described by Dr. Richard Burt at NWU's Feinberg School of Medicine in the first 45 seconds of this lecture video. . .

          http://www.youtube.com/watch?v=msYTO...eature=channel
          .

          Comment


            #50
            Originally posted by BJG55 View Post
            Considering the invasiveness of the SCT with Chemo, I am glad that I opted for SC treatment via Slavin in Israel. The beginning of that protocol is similar. Extract bone marrow from your body, clean it, do some patented thing to it, and put it back into your body via a lumbar puncture. I have benefited from this treatment, but the Dr.'s have never called it a cure. It is the most effective treatmet I've had to date.

            I know that I'll likely start to progress again in the future, but I will happily go do a second treatment. Next time, I hope to avoid going in July! That was worse than the actual procedure.
            Hi BJG55,

            Oustanding that you have had treatment that you are personally experiencing benefit. Fantastic to hear for your good health!

            I'm slightly confused by your comment "Considering the invasiveness of the SCT with Chemo." HSCT is not "invasive" by a clasical definition because there is no surgical procedure (like there is with an aspirated bone marrow transplant). The hematopoietic stem cells are harvested from the peripheral bloodstream (similar to a dialysis process). So happily (for me, and others) no cutting is required. It's all done through IV's into the bloodstream.

            I can understand how intrathecal injections like what you have done is to target repairing damage already-caused by MS disease activity. The in-vitro data looks quite good so far. I'm personally still waiting for a population study to show repeatable in-vivo results. Even though we're not quite there yet, I am sincerely hoping to to see some positive data at some point in time because the research at the cellular level looks so promising.

            As for my own personal thinking, I thought it best for me to stop the underlying MS disease process & activity first via HSCT. As a curative treatment HSCT works by changing the body's overall T-cell epitope (antigen binding) repretoire, inactivating autoimmunity (making the body's immune cells "antigen naive") which results in restoration of immune self tolerance (which is often referred to as "resetting" the immune system) which stops the underlying MS disease activity & progression. Once acheived, the body then has a chance to repair (or compensate for) some of the existing neural damage that is not undermined by further MS disease progression, often resulting in (appears to be permanent) symptomatic improvement. Luckily for me I have so far improved from EDSS 3.5 prior to HSCT, to currently EDSS 2.0.

            So once again congrats for you're taking control of you disease and my sincere bestwishes for your good health!
            .

            Comment


              #51
              thank you for the information

              thanks for the information

              Comment


                #52
                Invasive

                George, Perhaps the word "invasive" may not be the one that you would use; however, wiping out one's immune system with chemo is a more aggressive treatment than I was willing to undertake. I hope that clarifies what I meant by the term.

                Comment


                  #53
                  Originally posted by BJG55 View Post
                  George, Perhaps the word "invasive" may not be the one that you would use; however, wiping out one's immune system with chemo is a more aggressive treatment than I was willing to undertake. I hope that clarifies what I meant by the term.
                  Fair enough. HSCT is definitely a serious procedure, not to be taken lightly. In the end it comes down to an individual's decision. I'm just glad that it is an option available to those that have an opportunity to choose this specific curative therapy.

                  My bestwishes for your good health!

                  Comment


                    #54
                    Stem cells

                    Hi Georgegoss,

                    I actually contacted Heidelberd University and I am planning to see then and discuss. However, if it is possible I would appreciate if you could pass me an email address or some contact as I would like to discuss this more in detail. I read your blog also and I do believe this might be the cure for ms.

                    Comment


                      #55
                      Originally posted by ariadnna View Post
                      Hi Georgegoss,

                      I actually contacted Heidelberd University and I am planning to see then and discuss. However, if it is possible I would appreciate if you could pass me an email address or some contact as I would like to discuss this more in detail. I read your blog also and I do believe this might be the cure for ms.
                      Congratulations Ariadnna. I'm happy to share whatever info I can with you and am also interested to know more regarding your experience with Heidelberg. On my blog if you click on my profile there is an e-mail contact listed. And just in case you can't find it. . .

                      ***Personal email address removed per MSWorld guidelines.***

                      Comment


                        #56
                        Hi Ariadnna,
                        I too have been following with much interest this thread and have read George's blog and have been in contact with him. My wife Carey is the MS'er in the family and I/we are considering the fully ablative HSCT procedure. I am curious as to your personal MS condition...as we know, George was 44 years old and SPMS when he had the procedure. Carey is 62...dx April 09 PPMS...spinal exclusive lesions (no brain lesions)...symptoms pretty much limited to left leg / foot...so far she walks unaided but uses a Walk Aide to help her foot drop...plays golf 3 times weekly & goes to the gym 3 times weekly...symptoms gradually worsening. We want to stop this thing and feel HSCT is the only thing out there that could do it...slowing the progression is all well and good but it's just that....slowing the progression. Carey is not as "on-board" with this as I am but I am moving her along. George's blog and all his knowledge and all the other websites he refrences are invaluable...thank you again George...YOUDAMAN!!!

                        Thank you Ariadnna...best of luck to you!

                        Brad
                        Sarasota, FL

                        Comment


                          #57
                          George

                          hi, just a quick question. my head is spinning after reading all the pages. glad you are doing better, but how can they say it is a cure if they still don't know what causes MS. don't you need a cause first then the cure?

                          Comment


                            #58
                            Originally posted by 1523371682@facebook View Post
                            hi, just a quick question. my head is spinning after reading all the pages. glad you are doing better, but how can they say it is a cure if they still don't know what causes MS. don't you need a cause first then the cure?
                            Very fair question. I'm very glad you asked it.

                            Before answering the important question of why Hematopoietic Stem Cell Transplantation (HSCT) is the only treatment that qualifies as a cure for MS, I will preface with the following comments. . .

                            It is still not understood "why" MS occurs. But it is well understood "what" is happening in individuals with MS.

                            As for the cause. . . The general prevailing (unconfirmed) belief among scientific professionals is that a genetically susceptible / vulnerable individual is exposed to a yet-to-be-identified environmental antagonist that initiates the neurologically-damaging immune self-intolerance of MS. I have heard the apt analogy that genetics loads the gun and the environment pulls the trigger. Clearly more elucidation is required in this area.

                            As for the underlying MS disease process / progression, the overwhelmingly-established science and scientifically-valid data clearly indicates that the mechanistic action of the underlying MS disease pathology is that of self-intolerant autoimmunity. Most doctors / researchers now consider this as fact, not just conjecture:

                            Researchers publish results settling multiple sclerosis debate

                            http://www.physorg.com/news/2011-02-...is-debate.html

                            "This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles."

                            With that said, it is important to note that there is no universal definition of what a cure for MS is. Even doctors and researcheres do not all agree. So in the end it comes down to what each individual definines as a cure. As for myself, my definition of a cure has always been the same as my original objective; "To stop or halt the underlying MS disease and progression" which the vast majority of people experience. But for many people HSCT's curative efficacy does not stop there. A great many people will have have improvement (reversal) of their exiting MS symptome as well, just as I have experienced for myself.

                            Comment


                              #59
                              Originally posted by georgegoss View Post
                              Very fair question. I'm very glad you asked it.

                              Before answering the important question of why Hematopoietic Stem Cell Transplantation (HSCT) is the only treatment that qualifies as a cure for MS, I will preface with the following comments. . .

                              It is still not understood "why" MS occurs. But it is well understood "what" is happening in individuals with MS.

                              As for the cause. . . The general prevailing (unconfirmed) belief among scientific professionals is that a genetically susceptible / vulnerable individual is exposed to a yet-to-be-identified environmental antagonist that initiates the neurologically-damaging immune self-intolerance of MS. I have heard the apt analogy that genetics loads the gun and the environment pulls the trigger. Clearly more elucidation is required in this area.

                              As for the underlying MS disease process / progression, the overwhelmingly-established science and scientifically-valid data clearly indicates that the mechanistic action of the underlying MS disease pathology is that of self-intolerant autoimmunity. Most doctors / researchers now consider this as fact, not just conjecture:

                              Researchers publish results settling multiple sclerosis debate

                              http://www.physorg.com/news/2011-02-...is-debate.html

                              "This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles."

                              With that said, it is important to note that there is no universal definition of what a cure for MS is. Even doctors and researcheres do not all agree. So in the end it comes down to what each individual definines as a cure. As for myself, my definition of a cure has always been the same as my original objective; "To stop or halt the underlying MS disease and progression" which the vast majority of people experience. But for many people HSCT's curative efficacy does not stop there. A great many people will have have improvement (reversal) of their exiting MS symptome as well, just as I have experienced for myself.
                              I now realize that I didn't add the important final comment to these statements. Sorry.

                              Basically. . . So long as it is understood "what" is happening with the underlying MS disease mechanism (immune cellular autoreactivity), then it is not specifically required to know "why" MS is triggered (although that would still be useful information that will hopefully someday be discovered). . . . .

                              How & why does HSCT cure multiple sclerosis?

                              As a curative treatment HSCT works by changing the body's overall B- and T-cell epitope (antigen binding) repretoire, inactivating autoimmunity (making the body's immune cells "antigen naive") which results in restoration of immune self tolerance. This is often referred to as "resetting" the immune system which stops the underlying MS disease activity & progression. Once acheived, the body then has a chance to repair (or compensate for) some of the existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.

                              Comment


                                #60
                                Hi George - I think you may have misunderstood.

                                You say

                                And on top of this, 100% of the RRMS treated patients have had their disease activity completely stopped and 80% have had "substantial" symptomatic improvement (as measured by EDSS). It seems to me it would be quite hard to beat these numbers
                                The study referenced concludes

                                HSCT, a stem cell treatment in which a patient's immune system is completely destroyed through the use of chemotherapy drugs, and then "rebooted" by transplanting their own bone marrow derived stem cells back into the patient, has been shown to curtail disease progression, at least in some patients, over the course of a recently released 11 year study (click here). Patients with active inflammation fared best, with 44% of them showing no progression after an average of 11 years. Only 10% of patients without active inflammation (enhancing lesions) saw such success.
                                44% is a lot less than 100%

                                i.e. there are people with MS that have had the same procedure as you and then after a number of years have started to progress again.

                                Comment

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