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-   -   Tovaxin trial (https://www.neurotalk.org/multiple-sclerosis/4559-tovaxin-trial.html)

Sweetyhide 11-28-2006 03:32 AM

Thank you Scotch and Cherie.

I have to admit I am not very good at waiting.
The way I figure it maybe around Christmas or towards the end of the year they will be calling. (???) They did say it might take longer. Just depends on how it all goes I guess.

E, I will be crossing my fingers you have the rouge cells. Sounds weird to wish that for someone.

Scotch_Lass 11-29-2006 08:48 PM

Tovaxin
 
Hi all!! A friend of mine that was in the first Clinical Trials for Tovaxin wanted me to post this information here.


TOVAXIN INJECTION SITE REACTION UPDATE

If you visit Tim's site http://www.ihavems.com, there is a link at the top of the page updating a post ut injection site reaction. The reaction he had was actually from the Band-Aid and not the vaccine.

March 31, 2005 – Three days after Tim received his injection, he removed the little round Band-Aid and discovered that there was redness at the injection site. Dr. Zhang had told Tim that about 20% of the people that he treated in the late 1990s had a reaction at the injection site. The redness was possibly a sign that the army of antibodies were attacking the attenuated myelin reactive T-cells from the vaccine and causing the redness at the point of injection. We were all delighted to see this. It would be 6 months before Tim would receive another injection, and at that time Dr. Loftus realized that the redness was from the Band-Aid and not from any battle between the protective T-cells generated by the vaccine and the injection of attenuated myelin reactive T-cells. Since plenty of time had passed since the original post, it didn't occur to us that we should go back and correct this erroneous observation. Tim has never had any redness at the injection site caused by a reaction to the vaccine. Tim has shown us some websites where people who are getting into the current study are hoping to see redness at the injection site, and he is concerned that if someone in the study does not see redness at the injection site, they will assume that they are in the placebo group. It should be obvious from Tim’s experience that people in the study could see redness caused by a reaction to the Band-Aid or see redness caused by a reaction to the vaccine. The vast majority of patients should not see anything. If you know someone who is in the current study, please point this out to him or her.
This is the remainder of the post from 3/31/05 and the picture of the Band-Aid reaction. Notice how it has the outline of a little round Band-Aid – Tim will have his blood checked 4 months from now to see what level of myelin-reactive T-cells is present. A person with MS will continue to produce these bad T-cells, but by evaluating their blood and giving them the appropriate vaccine booster, the amount of myelin-reactive T-cells will approach zero and the destruction of myelin will stop. By analyzing the patient’s blood every 6 months, the scientist is also able to look for any epitope (we are not going to try and explain that) shifts in the bad T-cells. The person’s vaccine is constantly monitored and adjusted to keep the disease from ever doing damage again. This is personalized medicine. AUTOLOGOUS (the donor and recipient are the same individual) treatments have very little safety concerns, have no rejection problems, and are patient specific. For common short-term diseases, the “one size fits all” types of treatments are effective, but for autoimmune diseases, various types of cancer, and a host of other diseases, making the treatment using the patient’s own cells is a medical missile that is programmed to seek out and destroy the problem.


I have also been waiting to see if I will be accepted to a Tovaxin Clinical Trial. I had my first visit on November 10th and I thought I met all the Criteria but there is a question due to my MRI's. It has something to do with meeting the McDonald Criteria for MS. Something to do with my lesions. I had to have new MRI's taken and sent to the Study Doctor. So I am waiting to see if I will be accepted and if I am, I still have to see if I make the Myelin Reactive T-Cells. So I am just waiting to hear from the Trial Center.

I have believed in this procedure for over 1 1/2 years and I still think it will be a miracle if I get to try it. Might get the placebo, but will eventually get the real Tovaxin.

Hope Tim's explanation helps to clear up some misconceptions. He is a very nice guy and he is still doing well. :)

Thanks,
Scotch Lass

tovaxin_lab_rat 05-15-2007 07:50 PM

I don't know if it's kosher to drag up an old post but this is the only thread I could find here about Tovaxin, so here goes!

I am also in the Tovaxin clinical trial and am just getting ready for my third vaccine on May 24th.

Is there anyone here besides Sweetyhide that is in?

Scotch Lass, did you ever get accepted? I know that Wiz didn't.

SallyC 05-16-2007 12:00 AM

Hi Cheryl, nice to see you here.:)

Do you know if you are on the real thing? How are you doing so far? Any difference? Let us know..K?

:hug:

tovaxin_lab_rat 05-16-2007 09:55 AM

Quote:

Originally Posted by SallyC (Post 100154)
Hi Cheryl, nice to see you here.:)

Do you know if you are on the real thing? How are you doing so far? Any difference? Let us know..K?

:hug:

I don't know if I am on placebo or not. So far so good, I guess! I have been a little sick after each vaccine, fever, achy that sort of stuff. But nothing a couple of advil or aleve won't take care of over a 12 hour period.

;)

SallyC 05-16-2007 02:25 PM

Quote:

Originally Posted by Av8rgirl (Post 100302)
I don't know if I am on placebo or not. So far so good, I guess! I have been a little sick after each vaccine, fever, achy that sort of stuff. But nothing a couple of advil or aleve won't take care of over a 12 hour period.

;)

Thanks Cheryl, I hope this turns out to be the one for you.:p

tovaxin_lab_rat 05-16-2007 03:32 PM

Quote:

Originally Posted by SallyC (Post 100417)
Thanks Cheryl, I hope this turns out to be the one for you.:p

I guess we will find out! Anything that breaks the exacerbation cycle that I have been on it good in my book!

Also, anything to help further the cause for MS treatments for others and gets another treatment in the toolbox for the rest of those with this disease is good as well.

It's an interesting treatment.

There is some collateral studies going on at the same time with B-cell vs T-cell theory about MS going on at the same time. I have had some interesting discussions with the neuro in charge of the study. Good guy!

tovaxin_lab_rat 05-29-2007 08:24 PM

Shot #3 last Thursday. And the MRI was today.

Am I the only member of this forum in this trial?

Chris 05-29-2007 08:35 PM

I was in the original Antegren Trials (Tysabri). As it turned out, I was getting the REAL thing, and did very well on it. I hope the same turns out for you. I had 3 doses of Tysabri after the trial was opened up, but haven't been on it since, as I've been pregnant or trying to become pregnant ever since.

Keep us informed of your progress.

Best of luck to you,
Chris

tovaxin_lab_rat 05-29-2007 10:56 PM

Quote:

Originally Posted by Chris (Post 106708)
I was in the original Antegren Trials (Tysabri). As it turned out, I was getting the REAL thing, and did very well on it. I hope the same turns out for you. I had 3 doses of Tysabri after the trial was opened up, but haven't been on it since, as I've been pregnant or trying to become pregnant ever since.

Keep us informed of your progress.

Best of luck to you,
Chris

Thanks Chris. Good luck to you.


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