rebooting at JHH
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- Family Elder
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- Family Elder
- Posts: 1161
- Joined: Thu Sep 14, 2006 2:00 pm
- Contact:
I asked because EBV lives in b cells forever once it has been contacted. Since a considerable amount of MS research seems to keep looking at that, I wondered if the EBV is gone as well and thought it might ossibly be another reason for effective therapy
My bias is that MS is probably not autoimmune--No don't argue with me, I realize some of us...Lyon....have good research to back up the other side but I still remain in the side of Behan and Chaudhuri
But taht doesn't mean something like this might not be very effective but for reasons other than we think.
I like it cause it seems to work in the small studies I saw (if you know more post on the research thread I started please) , it is not something with long term impact on your body, and I am all out of wait! EDSS 6, thank you very much, I have to do something and this seems pretty safe to me personally
marie
My bias is that MS is probably not autoimmune--No don't argue with me, I realize some of us...Lyon....have good research to back up the other side but I still remain in the side of Behan and Chaudhuri
But taht doesn't mean something like this might not be very effective but for reasons other than we think.

I like it cause it seems to work in the small studies I saw (if you know more post on the research thread I started please) , it is not something with long term impact on your body, and I am all out of wait! EDSS 6, thank you very much, I have to do something and this seems pretty safe to me personally
marie
whats stopping you? have you sent in your records to JH?mrhodes40 wrote:I asked because EBV lives in b cells forever once it has been contacted. Since a considerable amount of MS research seems to keep looking at that, I wondered if the EBV is gone as well and thought it might ossibly be another reason for effective therapy
My bias is that MS is probably not autoimmune--No don't argue with me, I realize some of us...Lyon....have good research to back up the other side but I still remain in the side of Behan and Chaudhuri
But taht doesn't mean something like this might not be very effective but for reasons other than we think.![]()
I like it cause it seems to work in the small studies I saw (if you know more post on the research thread I started please) , it is not something with long term impact on your body, and I am all out of wait! EDSS 6, thank you very much, I have to do something and this seems pretty safe to me personally
marie
I am only just learning about this treatment! I am likely to go for it, it does not frighten me at all. I was much more worried about heart damage from novantrone or ongoing immunosppression from things like tysabri than I am about this approach.
Yes an EDSS 2 would be better we'd have to go back in time for that. My neuro (who just went to Stanford, so left my area) who was the director of a large Seattle MS clinic and who was running a tovaxin trial told me that the minority of patients have MRTC and that it is not going to be as useful as hoped because of that. He did not offer to let me in the trial, I am too "well controlled" on Copaxone and too far down the path. My "well controlled" is about my lovely MRIs...nary an inflammation insight, no brain atrophy at all, no new lesions. I just have this troubling little problem of deteriorating motor funciton. I did try to go off Cop and had an old fashioned exacerbation.
Those of you diagnosed in these days are fortunate, you have options I just did not.
marie
Yes an EDSS 2 would be better we'd have to go back in time for that. My neuro (who just went to Stanford, so left my area) who was the director of a large Seattle MS clinic and who was running a tovaxin trial told me that the minority of patients have MRTC and that it is not going to be as useful as hoped because of that. He did not offer to let me in the trial, I am too "well controlled" on Copaxone and too far down the path. My "well controlled" is about my lovely MRIs...nary an inflammation insight, no brain atrophy at all, no new lesions. I just have this troubling little problem of deteriorating motor funciton. I did try to go off Cop and had an old fashioned exacerbation.
Those of you diagnosed in these days are fortunate, you have options I just did not.
marie