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    Ore. man gets results from stem cell transplant

    this research could help sci.

    http://www.kgw.com/news/Ore-man-gets...268957071.html

    Ore. man gets results from stem cell transplant

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    by Cathy Marshall, KGW Staff
    Posted on July 28, 2014 at 3:41 PM
    Updated Tuesday, Jul 29 at 6:40 AM
    PORTLAND -- An Oregon man with multiple sclerosis is seeing remarkable results after a stem cell transplant.
    ?All aspects of my life have improved,? said 28-year-old Dan Tiel, ?I don?t even walk with a cane anymore.?
    Tiel's mother first learned of the clinical trial at Northwestern University while doing research on Facebook.
    ?I had been searching for hope for 10 years and this was the first time I really felt it,? Gina Tiel said.
    Dr. Richard Burt said about 80 patients a year are getting the stem cell transplants at Northwestern for a variety of autoimmune diseases.
    ?We give them their own stem cells that we collect from their blood and it regenerates a new immune system,? he explained.
    Dan experienced drastic improvement within a month. ?He was sitting in the sun and felt the warmth on his jeans. He couldn?t remember experiencing that before,? Gina said. Because the stem cell transplant rebuilt his immune system, it was no longer attacking his central nervous system.
    ?I can walk 3 or 4 blocks now without huffing and puffing. It?s those little things that make me smile,? Dan said.
    Anyone wanting more information about the program can send an email to Dr. Richard Burt or check for updates on the HSCT Stem Cells Hope Facebook page.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

    #2
    I posted about dr Burt in the autoimmune sci thread. I heard the success rate is very high. Over 80 to 90%. I am very hopeful it will stop my disease.

    because of the high success rate many insurance companies are paying for it. Even it is technically still considered " experimental". Although the same protocol has been applied to mild cancer treatment for a few decades.
    Last edited by CIDP_LEMS; 3 Aug 2014, 6:10 AM.

    Comment


      #3
      MS is a set up for scams and ineffective "effective" treatments, since 85% of people with MS have RRMS (relapsing-remitting MS) which goes into spontaneous remission periodically. In order to say that this treatment cured or even reduced the auto-immune effects of MS, significant lab studies, MRIs, and probably spinal taps would be needed in addition to a neurologic exam, including a revised EDSS score. Publication of the results in a reputable juried professional journal would also be required...not just some newspaper article from the local town which sounds more like an infomercial than anything else.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        The MS trials are currently in phase 3 trials. Done in Chicago by Dr Burt. The hope is it will become mainstream for RRMS in 10 years. My disease CIDP's trial is in phase 2. CIDP is not usually rr and it's HSCT Success rate also very high. But it is still early and long data is very limited. (61 patients so far, more than 80% in remission). I plan to join the phase 2 clinical trial. Don't want to wait till phase 3 where I will be randomized.

        You are right there are a lot of scams. To me the key is the chemo. No chemo, no efficacy. But the chemo regimen used for autoimmune diseases are lower than cancer and trm is very low in Chicago.
        Last edited by CIDP_LEMS; 3 Aug 2014, 12:12 PM.

        Comment


          #5
          Originally posted by SCI-Nurse View Post
          MS is a set up for scams and ineffective "effective" treatments, since 85% of people with MS have RRMS (relapsing-remitting MS) which goes into spontaneous remission periodically. In order to say that this treatment cured or even reduced the auto-immune effects of MS, significant lab studies, MRIs, and probably spinal taps would be needed in addition to a neurologic exam, including a revised EDSS score. Publication of the results in a reputable juried professional journal would also be required...not just some newspaper article from the local town which sounds more like an infomercial than anything else.

          (KLD)
          Are you saying that the work being done at Northwest University has no more credibility than some YouTube video from Liberia? Who's going to make this thing happen anyway?

          Comment


            #6
            Originally posted by SCI-Nurse View Post
            MS is a set up for scams and ineffective "effective" treatments, since 85% of people with MS have RRMS (relapsing-remitting MS) which goes into spontaneous remission periodically. In order to say that this treatment cured or even reduced the auto-immune effects of MS, significant lab studies, MRIs, and probably spinal taps would be needed in addition to a neurologic exam, including a revised EDSS score. Publication of the results in a reputable juried professional journal would also be required...not just some newspaper article from the local town which sounds more like an infomercial than anything else.

            (KLD)
            Wow! so by that measure Dr Young CHISCINET is also an infomercial. replace the word(s) "ms" with "sci" and Northwestern U with Rutgers and and whats the difference. both Universities are top line institutes of higher learning(sure there not MIT but still damn good schools). China has long been ripe with stem cell tourism. only in recent years has the government cracked down on stem cell fraud, seems they really want to be a world leader in legit stem cell research. I don't see where Dr Burt has done anything different than Dr Young?? it looks like Dr Burt is following the same clinical trial protocols(phase,1-2-3) as Dr Young. i like Dr Young and follow and donate to his research(he does so much with so little) but with all do respect Dr Young up to this point has only given us HOPE and nothing more.
            "I'm manic as hell-
            But I'm goin' strong-
            Left my meds on the sink again-
            My head will be racing by lunchtime"

            <----Scott Weiland---->

            Comment


              #7
              The 2 do not compare. You completely missed SCI-Nurses point.

              Comment


                #8
                Originally posted by Barrington314mx View Post
                The 2 do not compare. You completely missed SCI-Nurses point.
                well since you speak for scinurse, please explain her point otherwise the quote "not just some newspaper article from the local town which sounds more like an infomercial than anything else", sure seems shes casting some doubt about Dr Burt research.
                "I'm manic as hell-
                But I'm goin' strong-
                Left my meds on the sink again-
                My head will be racing by lunchtime"

                <----Scott Weiland---->

                Comment


                  #9
                  Originally posted by SCI-Nurse View Post
                  MS is a set up for scams and ineffective "effective" treatments, since 85% of people with MS have RRMS (relapsing-remitting MS) which goes into spontaneous remission periodically. In order to say that this treatment cured or even reduced the auto-immune effects of MS, significant lab studies, MRIs, and probably spinal taps would be needed in addition to a neurologic exam, including a revised EDSS score. Publication of the results in a reputable juried professional journal would also be required...not just some newspaper article from the local town which sounds more like an infomercial than anything else.

                  (KLD)
                  Thanks for bringing a healty dose of skepticism about this news.

                  Paolo
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #10
                    Official publications should be coming out in the next year or so from several hospitals around the world.

                    I think overall this clinical trial is at a more advanced stage than those of sci. Mainly because it utilizes a proven cancer treatment. HSCT. But its application in AI diseases is in still early stage. MS and CIDP have reported lots of success. Some other AI diseases are catching on too. But long term (30 years) data are not available yet.

                    I have CIDP (caused by a flu shot) and will start the treatment soon. Will keep posted. Btw, CIDP usually does not remit or relapse so it the diseases activity stops it is fairly confident it is due to the treatment. Good thing about CIDP is the damage is done in peripheral myelin, which readily regenerates. Unlike spinal cord axon. If caught early, many can make full recovery.

                    At this this point I am cautiously optimistic about the efficacy of the treatment.
                    Last edited by CIDP_LEMS; 9 Aug 2014, 4:26 PM.

                    Comment


                      #11
                      It appears CIDP does relapse or maybe this site is not correct.
                      http://www.ninds.nih.gov/disorders/cidp/cidp.htm

                      Comment


                        #12
                        Unfortunately most CIDP sites found by googling are very outdated. And they quote one another ad lib.

                        Generally speaking 70% CIDP are progressive. Most of the rest start out remitting/relapsing or waxing/waning before eventually turning into the progressive form. A lucky few may enter spontaneous remission, but most of those are children.

                        Usually the ones seeking HSCT are the ones who now have a progressive course and refractory disease.

                        It is a little understood disease. Some do very well (live almost a normal life) with minimal medication. Others go straight to a ventilator within a year.
                        Last edited by CIDP_LEMS; 10 Aug 2014, 4:36 AM.

                        Comment


                          #13
                          The site was updated April 2014 and has a link to clinical trials. Not sure if they are of interest to you. I have seen Gullain-Barre over the years and most responds well to the initial treatment. Several have had episodes where it returned with a vengence.

                          Originally posted by CIDP_LEMS View Post
                          Unfortunately most CIDP sites found by googling are very outdated. And they quote one another ad lib.

                          Generally speaking 70% CIDP are progressive. Most of the rest start out remitting/relapsing or waxing/waning before eventually turning into the progressive form. A lucky few may enter spontaneous remission, but most of those are children.

                          Usually the ones seeking HSCT are the ones who now have a progressive course and refractory disease.

                          It is a little understood disease. Some do very well (live almost a normal life) with minimal medication. Others go straight to a ventilator within a year.

                          Comment


                            #14
                            GBS is different from CIDP in that CIDP is chronic. GBS attacks once and then it stops. CIDP is closer to MS. The autoimmune attack is on going so the primary need is to stop the attack first. Then there comes the healing.

                            Thank you for the article. I have seen this page before. I have pretty read just about any CIDP literature I can find. Most of them are not new or updated per se, if you know what I mean. They just repeat the old stuff. Sad truth when it is a rare condition.

                            there are and have been many clinical trials for CIDP before. A few are piggyback off MS trials. Unfortunately most are at a dead end.

                            But I do have hope the autologous stem cells transplant will stop the autoimmune attack. Which will essentially make me a GBS sufferer, not CIDP. GBS can slowly heal. Hope it makes sense.

                            I am checked in the hospital right as we speak. Let's see what happens. I will let you know if the attacks stop or not. It will take a few months to up to a year to tell.

                            Final word, Damn flu shot. Lol
                            Last edited by CIDP_LEMS; 10 Aug 2014, 1:13 PM.

                            Comment


                              #15
                              Btw, these are the clinical trials I am talking about. My insurance is paying for it. $125,000. Which is reassuring in a way. Insurance companies usually don't like to pay for expensive elective procedures unless they believe in it.

                              It is a phase 2/3 clinical trial in Northwestern University in Chicago, by Dr Richard Burt. The success rate is 80 to 90% I was told. But the official data won't be out until 2015. So don't quote me. Lol. There is a Facebook group about it too, saying this treatment for RRMS is expected to go mainstream around 2022 to 2024 optimistically speaking. Unless fast tracked.


                              For my disease CIDP: still in phase 2, so no randomization. I will get the full treatment.


                              http://clinicaltrials.gov/show/NCT00278629


                              For MS: phase 3, you run the risk of being in the control arm. Sort of Double blind.


                              http://clinicaltrials.gov/show/NCT00273364

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