News for the Multiple Sclerosis Community

Tovaxin User's First Hand Account

"I am actually out doing things again. I am going by myself to see some friends in San Francisco in two weeks. This is amazing, since two years ago, my parents were taking me from our home in Michigan to Houston in a wheelchair.

Tovaxin is an autologous vaccine. That means they take some of my blood, cull out the T-cells and introduce them to human myelin. Those that react to the myelin are culled out and replicated. Once there are enough for the vaccine, about 45 million cells, the T-cells are irradiated so that they are still alive, but cannot reproduce. That is the vaccine.

The vaccine is injected just under my skin, you can see some pictures at http://www.TimsWellness.com, and the body treats these T-cells as a foreign invader and makes antibodies to eliminate only these specific T-cells. These antibodies not only take out the T-cells from the vaccine, but also eliminate all of that same type of T-cell throughout my body.

The body produces 2 to 3 trillion red blood cells per day. I am not sure how many T-cells are produced per day, but if 1 or 2 per million are troublemakers, that means there are hundreds of millions of myelin reactive T-cells floating around in the blood stream of someone with MS. A flare is when the body produces too many of these bad T-cells. No one is sure why this happens, but it may be caused by an upper respiratory infection, or a cold sore, or some other immune response that triggers the body to produce T-cells that mistake myelin as something bad.

By eliminating these 1 or 2 per 1 million T-cells does not compromise the immune system, but it does eliminate all of the T-cells that destroy the myelin. No bad T-cells means no more attacks. Anyone on Tovaxin will need to get a booster twice a year to keep the antibodies at a level sufficient to continue to eliminate all of the myelin reactive T-cells as they are produced. This is just like a flu shot.

I think about 30 to 40% of the damage that was done by the attacks has been reversed. The body will repair itself, as long as the attacks stop. I am helping myself by doing a lot of exercising and activities that improve my small motor skills.

I am doing many things that I was no longer able to do. When I started the vaccine, my parent's were cutting my food and feeding it to me. I am able to cut my own food, and today, I peeled some shrimp. Realizing that I can again do something as insignificant as peel a shrimp really makes me feel good. I used to wonder why people got so excited to see a disabled family member regain some little ability, now I understand, and I understand why my family is trilled at even my smallest improvement.

You will need to let me know what you would like me to write about. At this point, I feel that I am starting to ramble on, so I will stop. Ask me some questions, and I will try to answer them. I can even get a little deeper into the science behind all of this, and if I cannot answer it, I am sure I can get some highly technical, totally incomprehensible scientific explanation from one of the doctors involved in the study."

Wow.

This is great news. It really does act just like a vaccine. And there can't be any host-graft problems on account of it's your own cells. If this is true 'my heart soars like a hawk.'

If this stuff works, how expensive is it? If they are doing autologous cloning, they could make you a lifetime supply or you could go year by year.
art's picture
It's all still in trial. We'll have to wait for formal results - hopefully most of the pariticipants fared well and the side effects were tolerable. It will be a while before the general public will have access. But it's backed by a commercial company, so it will move faster than academia.
How often did you have to go to Houston and for how long.
The data for the phase I/II FDA trial will be presented late this fall. At that time Tovaxin should receive approval to begin phase IIb/III FDA trials. Even if it is fast tracked, it will be 2007 or 2008 before it is available to everyone. All of the participants have shown improvement and are doing things they had not been able to do for years. Most have seen reductions in their EDSS. Tim
When & where can I apply to try this, Tim? This is Jayne asking.
Hi Jayne, I believe you said you were part of the Baylor trials in the late 1990s, if so, you can get retreated for free. If that is the case, contact Dr Loftus or Maryann Murray at http://www.loftusmd.com/Articles/MS/TcellvaccineRR MS.html If you are looking to be in the next study, you should contact the company for instructions as to when and where to apply. The company's website is http://www.pharmafrontierscorp.com/. I have links to all of the different sites at www.ihavems.com and www.timswellness.com Tim
If this stuff works, how expensive is it? -- The marketplace always sells at what the market will bear. I have been told that it will be priced in the same range as the CRAB drugs. Since those drugs just treat the symptoms and don't get to the root cause, it seems logical that this vaccine would be priced higher. We will have to wait and see. If they are doing autologous cloning, they could make you a lifetime supply or you could go year by year. -- When they make the vaccine, they make enough for several injections and can make more from those cells. Since they are watching for any changes in the bad T-cells, a pint of blood is drawn every 6 months and analyzed for the presence of myelin reactive T-cells and to see if there has been any change in the myelin reactive T-cells. From this new blood sample, the next dose of vaccine is made. If there were any changes in the T-cells, the vaccine is adjusted to eliminate any new myelin reactive T-cells. The vaccine evolves to compensate for any changes in the myelin reactive T-cells.
jade247's picture

Hi Tim

I want to get a quote from the company regarding how much it would cost to dose all Australian MS patients (est. 660,000 by MS Society) who should I speak to/email initially? I wish to submit the info. to the Federal Government of Australia A.S.A.P.

Cheers Cathy Manners

Hello Cathy,

Have you been able to find the info you wanted re Tovaxin ie the company,the cost? I have a daughter and a niece in Australia with MS and am vitally interested.

I would like to know where I can email, phone and/or write to support your proposal to the Federal Australian government.

In hope
Regards
Ann Johnson

Well I am so happy to hear of this wonderful success. Is there any down side to this drug? when will it be more widely available?
Tovaxin is an autologous vaccine. That means they take some of my blood, cull out the T-cells and introduce them to human myelin. Those that react to the myelin are culled out and replicated. Once there are enough for the vaccine, about 45 million cells, the T-cells are irradiated so that they are still alive, but cannot reproduce. That is the vaccine. The vaccine appears to have arrested my disease and has done the same for the other people in the study. By eliminating these 1 or 2 per 1 million T-cells does not compromise the immune system, but it does eliminate all of the T-cells that destroy the myelin. No bad T-cells means no more attacks. Anyone on Tovaxin will need to get a booster twice a year to keep the antibodies at a level sufficient to continue to eliminate all of the myelin reactive T-cells as they are produced. When I started the vaccine, my parent's were cutting my food and feeding it to me. I am able to cut my own food, and today, I peeled some shrimp. I think about 30 to 40% of the damage that was done by the attacks has been reversed. The body will repair itself, as long as the attacks stop. I am helping myself by doing a lot of exercising and activities that improve my small motor skills. I do have a comparison of an autologous vaccine (Tovaxin) and a monoclonal antibody (Tysabri) on the TimsWellness.com site. I find that people confuse monoclonal antibody (Tysabri) and targeted T-cell elimination (Tovaxin). The big thing about autologous is that there is very little health risks. There is no rejection and it seems safe no matter what the dose is. My best regards, Tim www.ihavems.com
Which is the drug company promoing this? Anything you can tell me would be appreciated.
art's picture
You can search MSNews from the front page (middle of right column) and get these results.
The company's website is http://www.pharmafrontierscorp.com/. There are links to all of the different sites at www.ihavems.com and www.timswellness.com

Are we garanteed to be able to get the booster shot? What if we aren't

Art, it has been a couple years now since you were treated with Tovaxin-How is your symptomology now? Do you continue to improve? Do you continue to receive injections? I'm very interested to know the long term outcome from your treatment and are you as satisfied now...

Thanks

Tim

art's picture

I'm not on Tovaxin, just posting stories from others.

***
Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

Oh thanks...I'm a family practice Doc and an investor in OPXA. Just wondering how the patients have been responding to the treatment. The science behind this tx is solid and it gives hope to a lot of people suffering from MS. Any news from folks who are in the phase IIB trial? your response is appreciated-Tim

art's picture

Not recently, actually. And I see that Tim's site is under construction. Hmmm...

***
Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

Hello, congratulations are in order and I am definetely one who can appreciate the significance in pealing a shrimp.

I have MS, volunteered for a Tovaxin Study but did not have a mylin reactive t-cell, bummer I know, but just wondering if youve heard of anything similar I can go for? Im currently taking Avonex onece a week but well, its not slowing the progression. Thanks for reading and I hope to learn something knew everday. Oh, and Im very very happy for you!

Chris, Atlanta, GA

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