I had my second blood draw for the Myelin Reactive T-cell blood test on June 27th and found out today that I am still not producing them. I am rescheduled for another blood draw 90 days from now.

Av8rgirl,
Sounds frustrating but I'm in awe of you trying to help others by being in a trial.

Sorry it does not seem to be working out. Thanks for being a lab rat!!!

Cheryl,

That stinks.

I hope sincerely that something good comes of this for you.

-Vic

Thanks....

Vic, I am not sure what to think about this. Makes me think that I was on the real thing and it's still working but I have no clue at this point ...

I don't do well in the heat of the summer so this is going to be an interesting next couple of months since I am now not on anything thing and no steroids at all. Which I guess is ok...I can't use them as a crutch now. I am definitely a lab rat now.

Crank up that a/c for the summer. I am (finally) and it is helping.

-Vic

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