Page 5 of 5
Posted: Sun Dec 07, 2008 8:43 pm
by Aggie03
Jane,
I just got diagnosed and got in the trial. As far as the other dates, I didn't pay that close attention to give you those off the top of my head.
I have to find a new neurologist in my area and see what they think about everything and explore what else is out there. Since I am doing very well at the moment, right now I believe that I would be willing to wait and see what you come up with.
Please let me know what I can do to help!
Brad
Re: crazy question
Posted: Mon Dec 08, 2008 9:56 am
by av8rgirl
JanethePain wrote:Okay, kids, if I "read" crazy, it's because I'm coming down (I'm pretty sure) with a major sinus infection and am so oxygen-deprived with this congestion I hardly know what I'm doing.
So--some questions, if you will:
1) For those who got the real thing during the trial: if you all can remember, how many days were you "off-therapy" between finishing your last conventional meds and getting your first jab of Tovaxin? I went about 13 months, plus or minus a few days.
2) How long did you have to wait between your Shot # 5 until OLTERMS kicked in and you got re-juiced? That came down to one year (exactly) for me.
3) For you Placebo Kids: how long were you off-therapy between last meds and REAL stuff in OLTERMS?
I guess this is what I'm trying (poorly) to get across: would you be willing to be off therapy for six months to a year while I (and any other strident other lab rats) start asking some questions and raising some cane and trying to find some leads really worth pursuing?
For what it's worth, I got onto that US Government clinical trial site and copied the locales nationwide that participated in our Tovaxin stuff. There isn't any fine detail of contact info--that's my next step, you see.
What I hope to do this week is shoot out snail mails and e-mails to Study Site docs and coordinators asking them if they'd like to add their $0.02 to the plan of getting as many of the 150 of us on board to make the collective pitch to the BIG pharmas.
Hope this is clear. My Sucrets are calling!
1) real drug final dose 9/21/07. i rec'd real drug during the double blind IIb trial.
2) nothing since 9/21/07. i never converted to positive MRTCs after 4/1/08 when my phase of the trial ended and OLTERMS began and the trial was terminated.
This is the only drug that has worked for me. My neuro is very disappointed.
Jane (and others)
I happen to know for a fact that $25m was just line item appropriated in the new budget for MS research. I am willing and able to help find $$$$. Jane knows for a fact that I will do what I can and have the connections.
Posted: Mon Dec 08, 2008 1:17 pm
by patrickm
I'd be happy if somebody could just get me a key to the lab so I could liberate my own vaccine. It's not like anybody else can do anything with it!
