This Is MS Multiple Sclerosis Knowledge & Support Community

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Lyon wrote:Pretty intense Patrick, but a real interesting outlook.

Thank you for your perspective Patrick.

Lyon wrote:Oddly, earlier there was a thread at ThisIsMS which discussed the fact that people likely to enroll in clinical trials were also more likely to be the sort to try alternative therapies, supplements and mega dose vitamins....with the point being that those same people would also be less likely to avoid doing "everything in their power" to fight MS..ie: be less likely to restrict themselves to abide only the terms of a clinical trial.

I find this interesting as I am one who adhered to the protocol to the letter. I am also one who did not seek alternative therapies, i.e., eastern medicine or off label or supplements or mega dose vitamins. Maybe I am an anomaly but I believed in the veracity of the protocol (maybe it's my background) and the results are only as good as the participants and their input.

Lyon wrote:We've obviously noticed along the way that there is long list of known substances which can mask mrtc's and "goof up" Tovaxin treatment. We can only guess whether the list is complete or if there are other substances which negate the effect of Tovaxin in the same way that certain factors seem to render other vaccines useless.

I doubt we'll ever know, but it would be interesting to know what percentage of Tovaxin IIb participants involved themselves in other things, and I'd guess the percentage was fairly high.

Then again, I don't think Lew has done anything "funny" along the way and hasn't seemed to experience any benefit from being on the "real thing" for some time.

Bob

If I knew what is causing my negative MRTC test results, I would be elated at this point. This 90 day waiting period between blood draws in killing me!!

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Lyon wrote:

av8rgirl wrote:If I knew what is causing my negative MRTC test results, I would be elated at this point. This 90 day waiting period between blood draws in killing me!!

I don't blame you for your anticipation, but even though I've heard people mention that steroids are clear of your system in 30 days, from things I heard at the beginning of the Tovaxin IIb it seemed that steroids were masking mrtc's up to 90 days. With that in mind, waiting as long as possible might just increase the odds of a favorable result.

Bob

I haven't had any steroids since April 1 of 2008. That was 3-day IVSM with no oral taper. So, I guess we shall see what happens.

I've rolled the dice with this trial for my own well-being, and obviously my family, friends and employees all share in my risk/reward. I have not shown any improvement and in some ways have worsened. My fatigue and brain fog are definitely worse.

I have watched and suffered from afar as others in the trial, both here and elsewhere, or others with friends and family in the trial, gutted out a long year just waiting for the open label reward. For somebody to come forward and say that they listened to the terms of the study, accepted them, and then not only lied their ass off just for self-benefit but also knowingly skewed the study at the same time, well that sort of silly selfishness doesn't sit well with me. It's an insult to those of us who stepped forward and accepted the risks along with the potential reward. It's BS.

The only way I know it can be dealt with now is for them to fess up to their coordinator and have their data pulled. That of course doesn't make up for taking some one else's spot who badly wanted in, would have adhered to the protocol, and was rejected because their spot was taken by a selfish douchebag. And it doesn't make up for what may be their part in the top line conclusions that were just reached and the far reaching ramifications of those conclusions.

I'm so pissed I'm taking a break for a while. I'll be back in October maybe. Or not.

Why would you want to take a drug that requires you to do 97 things to get it to work?

A drug should work weather you take a supplement or not. It should work if you drink a beer or not.

I hate to be a jerk because I understand the frustration. No drug that requires 97 hoops to be jumped through to get it to work will ever be studied properly or used in the mainstream including Tovaxin, Goat serum, or water from a "special pool."

Don't be mad at people for living their lives and trying to be healthy while they are in this trial. If my body was failing no trial would be important enough to convince me not to fight it. It's a natural instinct to fight.

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I have not hyped Revimmune once in this forum and you just did for me simply in the fact as what you just wrote.

I had to follow a guideline not related to Cytoxin for 25 days or so to directly keep me healthy from the chemo...never to make the drug effective.

I refuse to compare Revimmune to Tovaxin.

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You know if you want facts, want blunt, and want the truth how about this Bob( Thank you for the link for the video but it was Brett who emailed me and asked me why I don't contact JH)

There are numerous people including myself who are getting better from what I / We went through. Only Tim ever showed improvement from Tovaxin. I find it damn hard to believe JH has been able to kick out Revimmune patients for their study results. Even the SPMS'ers from the early trials are included. They were never kicked out.

Some fellow MS'ers who were in this very trial got into Revimmune less than one month after being kicked out of this trial. They are already getting better so it should show you not to necessarily quit trying to find something effective just because you were screwed by Opexa.

I never wanted to bring it up Bob but lets say it like it is. Revimmune works. I am very very very x 1000 times sorry Tovaxin doesn't. I was sure it was going to but it doesn't. I always thought it was Tovaxin and Revimmune. I was wrong. I really hope you don't think I am smoking a victory cigar over this.

I am applauding all of the Tovaxin trial people for trying something and just not letting this thing win.

I feel exactly as Patrick that someone would compromise a study.
Un-fricken-believeable!

If you don't want to jump through the "97 hoops" ( ) drop out of the damn study.

I'm sorry but I consider one of the "97 hoops" the Alabama people who did everything right and were kicked out of the Tovaxin trial. What exactly did those folks do, besides get worse, that was bad for the trial? I talked to PVNS and he said he received a phone call and other than that he never talked to anyone!

All I hear many say is, "Well while I was doing this I don't do this..." OK, here is my question for you....

Do you really want to take something you can't live your life to make it work? If taking a supplement ot taking a steroid stops it's working...is it even working at all? Do any of the CRABS loose effect with Steroids?

I lost 25 days roughly (4 of being sick) but I am getting better and not just slowing progression.

So what exactly I repeat did those Alabama folks do besides get worse? Nothing they were making the data look bad and Opexa saw it as a last ditch effort at not wasting Investor money. The Final Solution in clinical trials.

An MS drug should A. Work or B. Not work.

I hate to say it but no one else would. One or 2 people is not going to destroy your results that bad. It takes more than that. Do the math. The whole study except for the few of you upset would have needed to destroy the data.

I agree with Bob. 2+2 doesn't even equal 3 in this case.

I don't even want to talk about HiCy over here but the good news is if you qualified for the Tovaxin trial you can probably perfect HiCy and still get on with your life. Heck for some of you Tovaxin may have worked and if it does....USE IT! Just beat this damn thing.

Chrishasms wrote:So what exactly I repeat did those Alabama folks do besides get worse? Nothing they were making the data look bad and Opexa saw it as a last ditch effort at not wasting Investor money. The Final Solution in clinical trials.

Do we know this for certain? Or, is it possible that another explanation might be that there was a problem with the way that the trial site was following Opexa's recommended protocols and that such a problem systemic to the entire trial site invalidated all of the study participant's data at that trial site?

NHE

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Chris

I am going to tell you the same thing here that I told you at Neurotalk, there are SOME people that cannot tolerate some medications. We have the right to CHOOSE what form of treatment we want and YOU DO NOT HAVE the right to condemn us for our choice.

Go back to your Revimmune forum and leave us alone. We are smart enough to make our own choices and stop cramming YOUR choice down our throats.

If we want to read about Revimmune, we know where to find it.

This is the tovaxin forum.