Quote:
Originally Posted by Jerseybean
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
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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.