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Posted: Wed Sep 26, 2007 1:43 pm
by Lyon
oo

Posted: Wed Sep 26, 2007 4:04 pm
by chrishasms
This explains it I guess....http://www.ninds.nih.gov/disorders/cidp/cidp.htm

It sounds worse than MS to me hehehe

Posted: Wed Sep 26, 2007 4:39 pm
by Lyon
oo

Posted: Thu Sep 27, 2007 12:52 am
by CureOrBust
CIDP is what I was diagnosed with for 10years before someone realised it was MS.

My way of thinking about it was that MS was a similar disease with the added "bonus" of a permeable BBB. Looking back now, i would of MUCH rathered CIDP as a condition over brain damage (ie MS). When I got the MS diagnosis it was more than a small shock. Also, when I had the CIDP diagnosis (over 10y ago) I specifically asked my DR could it "turn into MS". He said there were no recorded cases. What I forgot to ask was "could you be wrong, and that I actually have MS now".

The confusion was caused (i think) because I also previously had a case of "Bells Palsy" (peripheral demylination in a facial nerve) which showed up as peripheral demylination in nerve speed tests.

Posted: Thu Sep 27, 2007 3:58 am
by Loobie
I don't know why, since I'm not a scientist, but as my wife is getting her RN, I have learned that there is just so much that our hormones regulate. Then again, everything works together so they may not be any more responsible than anything else being out of whack. However, it just seemed amazing to me how much our hormones do.

The fact that we MS men seem to go through a reduction in our testosterone just makes me feel like that may be the connection. Read up on Andro Gel and it's effects on MS, specifically people with PPMS and it just makes me more curious. As I write this I immediately see a hole in my thoughts as the MS could be what is reducing the testosterone, but I guess that falls in to the proverbial "which came first" argument.

Posted: Thu Sep 27, 2007 4:50 am
by Lyon
oo

Posted: Sun Feb 17, 2008 5:50 pm
by IHaveMS-com
Hi to all,

I will try to answer a few questions that I see have been discussed.

1) Can I get tested for MRTCs ahead of the trial?
There is no lab test your neurologist can order to find out if you have MRTCs. Opexa uses their own proprietary T-cell Epitope Analysis Assay (EAA). Opexa is able to determine the patient’s specific set of T-cells (T-cell repertoire) that are reactive to the myelin proteins. Each patient has a unique peptide repertoire, and it is from this repertoire that the patient-specific vaccine is made.

2) Is it delivered refrigerated?
The life span of the vaccine is approximately 4 days. This is long enough to be able to ship it worldwide. The vaccine is alive attenuated T-cells. If the cells get too hot, they will start to die. Dead cells will still elicit an immune response, but the response will not be as good as a response from live cells. That is the difference between the Salk and Sabin polio vaccines.
The T-cells are frozen and thawed during the expansion process, but I don't think that it would be good for the vaccine if the cells were frozen in transport. I think heat is the greater worry, and I believe the vaccine is shipped in a styrofoam container, which should keep the vaccine within a certain temperature range during transit.

3) News about Opexa
The company just finished raising about $8 million. I believe only 3 brokerage firms were allowed to handle the offering and you would have needed an account at one of those firms to participate. I have mentioned before that when a company reports a going concern, that indicates that they do not have sufficient funds for the next 12 months. You will see this reported periodically and indicates that there will be another fund raising before long.

4) Will there be any trial outside of the US?
Eventually, but the current focus is on US FDA approval. When there is more money, there will be sites in other countries.

5) Must someone product the required MRTCs just like the initial enrollment to make vaccine for the extension study?
Yes. If you were able to produce MRTCs and are in the placebo group, I assume you are still producing MRTCs, unless since the initial testing, you have added something that suppresses T-cells. If you were in the Tovaxin group, you could be one of those lucky few who go into remission. In which case, your blood will be tested frequently to see if the MRTCs return.

6) Bob was close on his numbers, but these are the actual numbers for epitopes.
Tovaxin is based on T-cell reactivity to peptides from the 3 major myelin proteins, Myelin Basic Protein (MBP), Proteolipid Protein (PLP), and Myelin Oligodendrocyte Glycoprotein (MOG). Opexa uses peptides from the myelin proteins to identify the MRTCs. These peptides are used to screen for reactive T-cells found in the blood. Of the 163 peptides from these three proteins, 109 peptides have been found to be beneficial in the screening assay used in qualifying subjects for the current Tovaxin clinical trials. There were only 6 peptides from 2 of the proteins used when I started the study.

I am waiting to see posts from people who are starting the treatments in the extension study. They should keep in mind that there is a buildup period where each successive dose of vaccine stimulates the body to produce more T-cells to eliminate the MRTCs. Each injection also stimulates the immune system to produce memory WBC that continue producing the T-cells that remove the MRTCs as the body mistakenly produces them. You will start building protection with the first injection, but it may take 3 injections to get your immune system up to a level that can handle any large output of MRTCs, an attack. http://www.thisisms.com/ftopict-4868.html

Posted: Mon Apr 21, 2008 4:24 pm
by av8rgirl
If I am reading these posts correctly, since I was just tested for the extension study and the results were negative for MRTCs, there is a possibility that in the next 90 days, I could test positive for MRTCs?

Could the fact that I was on antibiotics for 45 days, from end of December until end of January along with Nasonex, be a contributing factor to the non-production of MRTCs? My blood draw was the beginning of April.

I am happy that I am MRTC negative, but at the same time I am currently experiencing a relapse.

Just curious if anyone can answer these questions.

Posted: Mon Apr 21, 2008 4:47 pm
by Lyon
oo

Posted: Mon Apr 21, 2008 6:40 pm
by av8rgirl
Lyon wrote:av8rgirl,

Hopefully Tim is watching and will correct me if I'm wrong...

To get into the trial originally Opexa had to be able to isolate your mrtc's and make the vaccine.

From what I know, being in a relapse and not producing mrtc's is impossible so something must be masking the mrtc's.

I don't know if such a massive epitope shift could happen as to cause Opexa to no longer be able to isolate the mrtc's....Tim would have to answer that.

Somewhere in this Tovaxin forum we had compiled a pretty good list of things which can mask mrtc's. Maybe December or slightly before?

I don't remember antibiotics being on that list, but my memory is crap.

Bob
I did read the list of meds and Nasonex is one of them. I stopped the Nasonex mid January, blood draw was first part of April. I could have an effect...but who knows.

My memory is crap too... :)

Posted: Mon Apr 21, 2008 7:00 pm
by Lyon
oo

Posted: Mon Apr 21, 2008 7:03 pm
by av8rgirl
Lyon wrote:
av8rgirl wrote:My memory is crap too... :)
Welcome to the club, we have a HUGE membership! :lol:

Often fairly recent members don't realize that thisisms has a "PM" function. You did notice and read a PM tonight?

Bob
Yes I did. And I even answered it!

Posted: Mon Apr 21, 2008 7:06 pm
by Lyon
oo

Posted: Mon Apr 21, 2008 7:10 pm
by av8rgirl
Lyon wrote:
av8rgirl wrote: Yes I did. And I even answered it!
Good. Even though you have a crap memory, you're a quick learner!

Bob
Now I want to know how you know I had a PM... 8O

Posted: Mon Apr 21, 2008 7:19 pm
by Lyon
oo