Greta said the "p" word! I wanna say it too! Can I? Can I?

Cause I just wanna ....:hissyfit::Bawling:

Well, we will just see what 90 days brings!

( I know...more BD! Yucky!) You will flunk in 90 more days!:D

Well Poohy ( said the P word too). Cheryl. Whachagonnado, now? Wait or try something else?

So Sorry..:hug:

Aw Cheryl, :(

When will you find out if you had the real thing? And if you did, and that's why you don't have the T cells, does that mean you'll only get the real thing again when you produce them again?

Do you feel better? Like it might be doing what it's supposed to do? All of this mystery and waiting, waiting waiting has to be really tough. :hug::hug:

I don't know Wiz. We won't be unblinded until some time in Sept/Oct when the last person has finished the TERMS trial.

And yes, I won't start the OLTERMS extension trial until I do produce the MRTCs so they can make the vaccine. I've been accepted into the extension trial, but they can't make the vaccine without me producing the MRTCs. According to the protocol they will continue to test me every 90 days for a year or until I decide to quit. If I quit, then all my data for the TERMS trial is dumped.

I haven't felt well since December when I had the sinus infection followed by the infection induced flare and then I had another flare in April treated with 3 days of IVSM. Fatigue and pain are the two things I am fighting right now...pain mostly but we are working on it.

I am doing ok, it's not like I can't function or anything. I was a little disappointed but at the same time thinking that maybe I was on the real thing and it's working. I just don't know. Being a blind lab rat has it's disadvantages!!

Hugs my friend, hugs...:hug::hug::hug:

Just wondering if you've heard from any others in the trial; whether they too are not producing the MRTCs now?

It's been so long since I research Tovaxin, Cheryl, I wonder if you wouldn't mind giving us a little run-down on the treatment protocol?

From Sweety's comments, I think she was going in there once a month for the TERMS trial ... What exactly do they do on that monthly visit (assuming you are on the treatment)? Theoretically, how many treatments does it take before you may be "done" . . . or is it potentially a life-long treatment plan? What, if anything, would define whether it has worked, or if you've had enough treatments?

I had high hopes for Tovaxin, especially based on Tim's results. I thought he just did a few treatments though, like with Revimmune, and then it worked (for him) . . .?

Thanks in advance for the info, at least as much as you are permitted to divulge while in a trial.

Cherie

I know what they do to her...ask lots of questions..run a neuro exam and take lots and lots and lots and lots and lots and lots and lots of "b-l-o-o-d". There I said it! :yikes::Bawling::thud:

The TERMS trial consisted of 22 visits in a 13-month period...five of which I received the vaccine.

Each visit I had a blood draw for testing of MRTCs, chem panel, STDs, west nile virus, hep ABC, and some other things, an MRI, a complete neuro exam, PASAT, EDSS, peg test, eye exam, and a questionnaire. Oh yeah and a pregnancy test and UA.

My last vaccine was Sept 21st, my last visit in the trial was April 1st. I had an MRI, blood draw, complete neuro exam and that visit also consisted of the first blood draw for the MRTC testing.

My EDSS, from what I can remember, waivered from 1.0 to 3.0, depending on how I was feeling. Mostly sensory changes, except when I had the flare last August and it included motor changes, balance and dexterity. I could barely pick up and hold onto the pegs.

My last visit on June 27 consisted of a blood draw and a complete neuro exam. No MRI, none of the other stuff.

I cannot answer your question on how long we are to receive the vaccine...life long or if there is an endpoint. I believe Tim is on his 22nd vaccine. But they are 6-8 weeks apart for a period of time, and then so many months off, and then 5 more vaccines after re-evaluation of the epitope/peptide for the vaccine. (he explains it a whole lot better than I do!) I am still trying to figure out why I am not producing MRTCs....:confused:

Does that answer your question? Or have I confused you even more?

As for anyone else not producing...I have no clue.

Cheryl, Were you getting sick (infections, viruses, ect.) when you were still getting the vaccine or did you start getting sick after you stopped getting the vaccine?

Have you had more problems with your MS during the time you were getting the vaccine or after?

I know there is no way to know, right now, if you were getting the real thing or not. Just curious :rolleyes:

I have an exacerbation in August, had my last vaccine on Sept 21. Other than that, I did fairly well from the time I started the shots in March until the exacerbation in August and it was a pretty bad one. I was down, and I mean down, for almost a month. Then I got that horrible sinus infection mid-December that after 2 rounds of antibiotics turned into a staph infection in my right sinus cavity.

Then another flare in April.

The months that I was on the vaccine, I'd say I was pretty stable...fewer complaints other than the fatigue. I had to increase the provigil and then after the August flare, I got steadily worse. Fatigue and pain.

No colds or viruses that I can remember during the vaccine period. Just after I stopped in September and since. I've had 2 exacerbations since I stopped...one was infection induced (sinus infection) and the other was a regular old exacerbation (April).

To answer your question about worse during or after? Definitely after. Back to the pre-trial me...only a bit worse...pain level is higher and definitely the fatigue level is higher. 400 mg of provigil does nothing. I take it and then I crash in the afternoon. So I am now just taking 200 so I don't have that afternoon crash. That's has been horrible.

Doc put me back on Sinemet for the spasticity. Added that to the Soma, along with Klonopin. Norco and/or Vicodin as needed. Seems to be a good cocktail as I have to function during the day. Sinemet doesn't make me drowsy. The Soma and Klonopin do. I found out that 1.5mg of Klonopin is 3 times the normal dose!! :eek: Ms. drug lightweight is maxed out on that one and it's not touching the RLS...Requip did nothing...:(

Long answer to a short question...:rolleyes: