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Whyare people so uninterested in having SCT?

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    #91
    To Katje

    I don't know if you're interested, but there was an episode on a programme here in Oz called Catalyst on the ABC (you can google it) where a British Doctor (David Wheldon) believes MS is caused by an infection known as Chlamydia Pneumoniae (not the sexually transmitted kind, but a respiratory pathogen) and can be treated with a long course (approx 1 year) of 3 specific antibiotics. I recently found myself to be positive and am looking into alternative treaments. I'm currently waiting on the results of special urine tests to come back from interstate before proceeding with specific treatment.
    I wish you all the very best in your search... Jen

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      #92
      Originally posted by chickenwogs View Post
      I don't know if you're interested, but there was an episode on a programme here in Oz called Catalyst on the ABC (you can google it) where a British Doctor (David Wheldon) believes MS is caused by an infection known as Chlamydia Pneumoniae (not the sexually transmitted kind, but a respiratory pathogen) and can be treated with a long course (approx 1 year) of 3 specific antibiotics. I recently found myself to be positive and am looking into alternative treaments. I'm currently waiting on the results of special urine tests to come back from interstate before proceeding with specific treatment.
      I wish you all the very best in your search... Jen

      20 years ago it was thought I had Lyme disease. I was treated with IV rocephin everyday for one year, penicillin shots, zithromax and one other antibiotic, cant remember the name. To this day I believe thats what kept my MS silent all these years whilst some of my MS friends kept declining. I have no proof, but I do believe in antibiotic therapy.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #93
        Originally posted by Tawanda View Post
        Hi Dave,
        Strictly my own .02, but 4 years without this M.S.-B.S. Is a success, IMHO (at least at my age)!
        Tawanda, you do have a valid point. I feel it unquestionably saved my life when I had it done, so yes, in that sense it was a most definite success. Thanks for reminding me of that! I just don't want to be too much of a cheerleader for a treatment that still needs more research. As Jules A said, this disease is maddeningly unpredictable.

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          #94
          I'm now four years post-HSCT and my underlying MS disease activity & progression is still enduringly 100% stopped. Combined with my stable 50% improvement of my EDSS, I personally call that a cure. . . .

          **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

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            #95
            Kimberly Bracy w/ Dr. Burt called me Friday to schedule a date to go out, I got scared and never returned her call. I'll cal her Monday.

            She knew my whole family were really sick with some flu, I really wasn't up to talk on the phone anyway.
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #96
              Thank you, George

              If I hadn't read your post years ago on this forum, (and had it stick in my head after two failed therapies) I might never have searched HSCT any further and certainly wouldn't have tried to get into Dr. Burt's trial. It gave (and still gives me) hope...something I think many of us on this forum need in the murky world that is living with MS.

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                #97
                Sandi Selvi and Brian Tilaro were the first two I knew of that had HSCT and this was over 5 years ago. I used to watch Brian's youtube videos. George was the one that stood out on FB in the HSCT groups.

                I still don't agree that is a cure, this is where George and I have butted heads in the past, but for now it's the best we have and stopping progression so my children don't have to visit me in a nursing home which is good enough for me.
                Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                  #98
                  Jack Osbourne...

                  ...did not mess around. He got stem cell treatment right off the bat (in Germany) and danced his butt off on DWTS. Was his 3rd place win a result of that? He was amazing!

                  I saw Jack Osbourne about a year ago on Dr. Oz where he mentioned the stem cell treatment, but it was almost as an afterthought. It was kind of like, "I eat right, exercise, and oh ya I almost forgot...I had some stem cell work done!" I was hoping at one point we would hear more about it, but we haven't as yet.

                  Obviously, $ was not an issue, but all the same, I was surprised that this was his first line of treatment. Perhaps one day this will be the norm and medical insurance will cover it.
                  Tawanda
                  ___________________________________________
                  Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                    #99
                    Isn't he also on Copaxone? His website youdontknowjackaboutms.com was created by Teva Neuroscience who make Copaxone.

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                      Jack Osbourne had a Stem Cell Transplant (I don't think he had the chemo) and is on Copaxone.

                      A lot of RRMSers are exceptionally active at Dx. I was running Marathons the first 6 years of my diagnosis. I would run races in the name of other MSers who were not as fortunate to raise money. Eventually MS took over and I would not be able to run today. Someone biked the 150 in my name this year.

                      Jack dancing was not a surprise. He needs to shake, bump and grind while he can. He is still pretty active, or so it seems and I hope he remains so for a long time.

                      MS is as unique to each of us as our fingerprints.
                      Katie
                      "Yep, I have MS, and it does have Me!"
                      "My MS is a Journey for One."
                      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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                        Hi Katje
                        did you get hsct after I would be interested to hear if you did

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                          Katie is right. There have been three or four "miraculous cure" stem cell patients (they went to Russia) on Current Affairs type shows down here.
                          But none of them had had MS for very long, so a good recovery from flare no.2 was to (most likely) be expected.
                          I'd like to see how they're going three years down the track. If it works, fantastic.
                          If not, then it's just another dream (if I had $100,000) that won't come true.

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                            What??

                            What is HSCT??

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                              Regarding initial quetion...

                              its always about the $$s, whatever it is.

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