Awwww, Cheryl, darn it....I hope you get back to feeling better soon..

Do NOT make me march up to your MRTC center and bang on it to get it to produce them cells!

They did it before and they can do it again! Smarten up over there! She needs those MRTC's and it's your job to produce when called upon so GET ON IT!!!

Seriously Cheryl, this just sucks.

I am praying that you get good results next time they test.

Cheryl

I wish you well. We are all grateful for you stand and disappointed that Tovaxin has not fulfilled its early promise. Most of us will look favourably on any glimmer of hope, but the Tovaxin is such a novel and interesting approach to an old problem.

Like Archimedes we are looking for that "Eureka!" moment. I will follow your progress with interest. If you study the early ups and down of Penicillin, the wonder therapy of the 20th century, you will realize that even with the research imperative of WW2 and boundless government funding new therapies take time. Lets hope that your fifteen minutes of fame will be as a pioneer in the development of a therapy that will help millions.

Regards JerseyBean

Hi JerseyBean

Welcome to Neurotalk! I see this is your first post.

I have not said that Tovaxin has not fulfilled any promises. It's a clinical trial. I have been participating in a double blind study. I have no way of knowing whether I am in the placebo group or the drug group.

My frustration right now lies in the simple fact that I am not producing the Myelin Reactive T-cells in order to make the vaccine necessary to continue in the extension study. The extension study is the open label phase where we receive the drug.

It has been explained to me that if you once produce MRTCs you will once again produce them. It's a waiting game and I am not very patient. It's been 90 days and now I must wait another 90 days to be tested again.

I think you have misunderstood.

As with anyone participating in a clinical trial, it's all about waiting.

As for Tovaxin, it's patient specific so I must wait until my body decides to produce MRTCs. For whatever reason, it is not producing. Either I was on the drug and it worked very well or something else is going on. Who knows? No one is telling me anything. That's my frustration. Not the drug.

My next appt is scheduled for Sept 24th!! I was afraid it would get scheduled while I was in England and we would have to play with the schedule but it all worked out just fine!!!

I'll take your place and go to England

Was I supposed to hope you flunked or passed the test?? I forgot! lol

Cheryl
Thanks for the update, and all the good info. Bummar about those cells, where could they be hiding? I'm sure they are waiting to make a grand entrance.

I'm sending some positive vibes and hope you don't get to feeling worse as the summer heats up.

's

I guess it depends on how you look at it...I didn't produce MRTCs so I guess I flunked.

You can't take my place, but you can go along!! It would be fun! Be a 4some instead of a 3some!! LOL!

See you on the 24th!

Thanks Bappy! If I knew where they were hiding, I'd be pulling them out with everything I have.

From what I know, if you once produce them, you will again. It's just a matter of time. I am just not a very patient patient!

England??? Who you going to ENGLAND with, there girlie????? Cuz we're going to WALES. WALES!!! Yes, it's maybe part of the Great Britain linkage, but it's called Wales. Here, try it---- say "W"---you can do it----"W". Then "ale" (as in "beer"). Come on..... "ale"-----say it!!! "Ale" Then add a "Z" sound. Yep, "Z." Oh, I know you can do this. "Z" "Z" "Z"

Ok now, put it together-----"W"-----"Ale" (mmmm......beer)----"Z" W--ale--z. WALES!!!

And if we're going anywhere else, it's going to be IREland. IRE---land. IRE (as in ****** off)----land. Where they make good beer and have cool, illuminated manuscripts. Oh... and herding dogs too. Cuz we love herding dogs. And we love sheep. And we love herding dogs that love sheep.

Now all you need, maybe, is some herding dogs that can round you up some reactive T-cells. Hey, there's a novel idea.

(you still practicing how to say "Wales"?)

Dang straight you're glad you got an appt. on the 24th of September. If you had to give up my birthday AND the trip to "W"----"Ale"---"Z", I would have been sad but used the extra seat space to go to sleep in on the plane.