Agreed!!
The only reason we are in Baltimore next week is because of this site.
I obsessively read the internet:
http://www.shibumi.org/eoti.htm
may make you smile.
safe etc.
TOVAXIN ROLE CALL
Yes, unlike Chris and Chenelle who pledged to keep us informed, and haven't!Lars wrote:Jamie,
Really happy for you. Good luck and stay in touch as much as possible.
Well Wishes,
Lars
Cute link Jamie. That's the thing about the internet. It feels that you're doing something useful at the time, but meanwhile your toddlers become teenagers without your ever having played a board game with them.
Bob
I had my next to last visit of my blinded trial today. That's Visit 16 if you're keeping score at home.
I actually fell asleep about 10 minutes into my 45 minute MRI today. That was sweet. Thanks Valium!
Had a blood draw and the usual hoop jumping and gerbil wheel running. Eyesight down to 20/25. EDSS score still steady at 1.5, though what keeps it there seems to change from visit to visit.
They have been given the protocols for the extension, where we will ALL get vaccine for sure. I was told that my blood draw at Visit 17 (The Last Visit) will also serve to tell Opexa whether I am making MRTCs or not and thus whether I go into the Vaccine arm of the trial extension or the Monitoring arm of the extension.
They said that Opexa would call to give me the thousand questions before my Big Blood Draw this time. Last time it was handled by a blood bank in TN.
And I guess that's about it. I go back for my last visit on 6/27.
I am stable. I am also still exhausted much of the time, I have a hard time maintaining concentration, and my brain is frequently addled. But I haven't had a relapse and I do not seem to be getting any worse.
My long term hope is to pair Tovaxin with rHIgM22 for an MS cocktail to halt the disease and reverse many of its effects. I don't think that's a crazy dream.
I'll post more when I know more after my next visit. I think I won't know about the T-cells for several weeks after the blood draw as they have to do a lot of separatin' and then feed them myelin to see which of the little bastards start chompin' on it. Leave my insulation alone!
Peace out.
I actually fell asleep about 10 minutes into my 45 minute MRI today. That was sweet. Thanks Valium!
Had a blood draw and the usual hoop jumping and gerbil wheel running. Eyesight down to 20/25. EDSS score still steady at 1.5, though what keeps it there seems to change from visit to visit.
They have been given the protocols for the extension, where we will ALL get vaccine for sure. I was told that my blood draw at Visit 17 (The Last Visit) will also serve to tell Opexa whether I am making MRTCs or not and thus whether I go into the Vaccine arm of the trial extension or the Monitoring arm of the extension.
They said that Opexa would call to give me the thousand questions before my Big Blood Draw this time. Last time it was handled by a blood bank in TN.
And I guess that's about it. I go back for my last visit on 6/27.
I am stable. I am also still exhausted much of the time, I have a hard time maintaining concentration, and my brain is frequently addled. But I haven't had a relapse and I do not seem to be getting any worse.
My long term hope is to pair Tovaxin with rHIgM22 for an MS cocktail to halt the disease and reverse many of its effects. I don't think that's a crazy dream.
I'll post more when I know more after my next visit. I think I won't know about the T-cells for several weeks after the blood draw as they have to do a lot of separatin' and then feed them myelin to see which of the little bastards start chompin' on it. Leave my insulation alone!
Peace out.
Thanks for the update Patrick and good hearing that you're still doing well.
In my wife's case, we'll be elated just to stop disease progression. Sounds like she REALLY lucked out that the slurred speech of two years ago was the entirety of MS's noticeable effect on her.
Interestingly, the Johns Hopkins researchers are using Copaxone after Revimmune treatment in the hopes that chasing the "decoys" Copaxone employs (evidently) substitutes for "evolutionary normal" experience and appropriately trains the naive immune system so that autoimmunity never returns.
My argument has always been that people with MS have already shown to have the needed predispositions. Eliminating the disease doesn't preclude a recurrence since those people have already shown to have the predispositions.
In the case of Revimmune, since it kills, not just myelin reactive T cells but all self reactive T cells, and IF Copaxone experience does train the naive immune system, the worry of MS or any other autoimmune disease returning would be eliminated.
Bob
In my wife's case, we'll be elated just to stop disease progression. Sounds like she REALLY lucked out that the slurred speech of two years ago was the entirety of MS's noticeable effect on her.
My wife also has been taking a sedative for her time in the MRI. She always says it's too cold and noisy to sleep, but when she comes out she sure LOOKS like she's been sleeping.PatrickM wrote:I actually fell asleep about 10 minutes into my 45 minute MRI today. That was sweet. Thanks Valium!
I guess I'll have to look that stuff up. That was/is my hope for rituximab....or some aspect of it. Let Tovaxin kill the offending T cells and let rituximab eliminate the offending B cells.PatrickM wrote:My long term hope is to pair Tovaxin with rHIgM22 for an MS cocktail to halt the disease and reverse many of its effects. I don't think that's a crazy dream.
Interestingly, the Johns Hopkins researchers are using Copaxone after Revimmune treatment in the hopes that chasing the "decoys" Copaxone employs (evidently) substitutes for "evolutionary normal" experience and appropriately trains the naive immune system so that autoimmunity never returns.
My argument has always been that people with MS have already shown to have the needed predispositions. Eliminating the disease doesn't preclude a recurrence since those people have already shown to have the predispositions.
In the case of Revimmune, since it kills, not just myelin reactive T cells but all self reactive T cells, and IF Copaxone experience does train the naive immune system, the worry of MS or any other autoimmune disease returning would be eliminated.
Bob
Sorry!Loobie wrote:You guys are way over my head today. WTF is rHIgM22?
http://www.ncbi.nlm.nih.gov/pubmed/17304578
Department of Neurology, Mayo Clinic College of Medicine, Mayo Clinic, Rochester, Minnesota 55905, USA. warrington.authur@mayo.edu
A recombinant human monoclonal IgM, rHIgM22, promotes the synthesis of new myelin when used to treat several animal models of demyelination. rHIgM22 binds to myelin and the surface of oligodendrocytes and accumulates at central nervous system lesions in vivo. The minimal dose of monoclonal IgM required to promote remyelination has a direct bearing on the proposed mechanism of action. A dose ranging study using rHIgM22 was performed in mice with chronic virus-induced demyelination, a model of chronic progressive multiple sclerosis. The lowest tested dose of rHIgM22 effective at promoting spinal cord remyelination was a single 500-ng intraperitoneal bolus injection. A time course study of spinal cord repair performed in chronically demyelinated mice revealed that remyelination plateaued by 5 weeks following treatment with rHIgM22. Two doses of rHIgM22 spaced 5 weeks apart did not increase the extent of remyelination over a single dose. The half-life of rHIgM22 in the mouse systemic circulation was determined to be 15 hr; the human IgM serum concentration was close to zero by 48 hr following antibody administration. We propose that the specificity of rHIgM22 for myelin on living tissue targets the antibody to demyelinated lesions, initiating a long-term reparative effect on the central nervous system. (c) 2007 Wiley-Liss, Inc.
I just have a daily comprehensive Google Alert
http://www.google.com/alerts
set up for MS, and it's pretty good about giving me the info.
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