Update on me

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Update on me

Postby av8rgirl » Wed Apr 30, 2008 8:56 pm

I just finished 3 days of IVSM for an exacerbation. I found out that my MRTCs were negative on the April 1 blood draw so I will have to wait the 90 days.

Since I just had an exacerbation and IVSM, I will have to re-sign the consent forms to continue in the extension study.

I guess the good news is the MRTCs are negative... :)

Now I play the waiting game.
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Postby ssmme » Thu May 01, 2008 5:19 am

I guess the good news is the MRTCs are negative...


I'm so sorry you have to play the waiting game. Have they indicated anything that you should/shouldn't do that could "mask" MRTC's from detection? I heard or read somewhere but I don't remember when/where that the spices in some foods can affect MRTC detection like the spices in Thai foods. Please don't hold me to that since I have no written evidence to back up this conjecture. It's just a straw I'm grasping at to help you help them find MRTC's so you can get dosed.

Hang in there.

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Re: Update on me

Postby CureOrBust » Thu May 01, 2008 5:44 am

av8rgirl wrote:I just finished 3 days of IVSM for an exacerbation. I found out that my MRTCs were negative on the April 1 blood draw
....
I guess the good news is the MRTCs are negative... :)
Have the Dr's given any explanation of what they think has happened if you have no MRTC's yet still had an exacerbation?

I would like to hear them say it.
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Postby Lars » Thu May 01, 2008 7:34 am

av8rgirl,
Sorry to hear about your exacerbation although the steroid timing was good considering you have a 90 day wait. This MRTC controversy has been highly discussed here and I still haven't heard anything that makes sense of it all. There is obviously some disconnect between the test and MS. I am still a month and a half from the extension and find it as bizarre as it was a year ago that I am worried about NOT producing MRTC's. Hang in there!
Good thoughts your way,
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Postby patrickm » Sat May 03, 2008 9:44 am

av8rgirl,
Really sorry to hear about how you're feeling. I REALLY don't get how you have an exacerbation without tons of MRTCs flooding your system. Seems quite odd.

Lars wrote:I... find it as bizarre as it was a year ago that I am worried about NOT producing MRTC's. Hang in there!
Good thoughts your way,
Lars


yeah, that was a weird feeling and it's finally started creeping back into my consciousness now that I'm 2 months away from that test myself. Seems incongruous and, well, like you said bizarre.
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Postby av8rgirl » Sat May 03, 2008 7:16 pm

No clue either. The MRTC blood draw was April 1. But who knows what makes one produce or not produce MRTCs. I know that when I first went into the study, I produced them like crazy.

My next appt in June 27th. So we shall see what happens!
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Postby av8rgirl » Fri Jul 11, 2008 2:52 pm

I tested negative again on the June 27th blood draw for MRTCs. Another 90 day wait :(
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Postby flipflopper » Fri Jul 11, 2008 5:10 pm

I'm very sorry to hear this av8rgirl!
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Postby av8rgirl » Fri Jul 11, 2008 7:01 pm

flipflopper wrote:I'm very sorry to hear this av8rgirl!


The first time I was tested for MRTCs for the TERMS study, I tested positive. Then when they drew the procurement to make the vaccine, I was told it would take about 10 weeks. I produced MRTCs in such abundance, according to Opexa, that it only took 6 weeks to make the vaccine.

I would be curious to know what has changed. I know I still have MS. I am just not understanding the process.
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Postby CureOrBust » Fri Jul 11, 2008 8:06 pm

av8rgirl wrote:I would be curious to know what has changed. I know I still have MS. I am just not understanding the process.
I dont know what I am talking about, but the little I understand of the process, is that they have a limited range of "epitopes/peptides" that identify the MRTC's. Yours may be of the type that they are not currently targeting in their process (ie your MRTC's don't attack their bait)?

Each trial they have performed they appear that they have increased the number.
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Postby Lars » Sat Jul 12, 2008 8:20 am

Av8ergirl,
Sorry to hear about your test. This particular finish line has a way of somehow staying just out of reach. We have discussed the MRTC issue over and over on this site and I still can help feeling that the narrow MRTC window can't be good for the marketability of Tovaxin.
Did the IVSM help? Hang in there.
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Postby av8rgirl » Sat Jul 12, 2008 5:57 pm

Lars wrote:Av8ergirl,
Sorry to hear about your test. This particular finish line has a way of somehow staying just out of reach. We have discussed the MRTC issue over and over on this site and I still can help feeling that the narrow MRTC window can't be good for the marketability of Tovaxin.
Did the IVSM help? Hang in there.
Lars


The IVSM helped somewhat, but that was back in April.

I keep going back and reading Tim's post about testing for MRTCs...but I also posted about the 30 vs 90 retesting waiting period and can't help but wonder why the difference in the waiting periods.

No one seems to be forthcoming with any answers.
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Postby Lars » Sun Jul 13, 2008 8:26 am

av8rgirl,
The reason I asked about your IVSM was actually a bit selfish. I went through it in December. It took nearly a month to do anything but then seemed to work to some degree.....until a few weeks ago. I am waiting for my MRTC results and am not willing to set this all back again. Regarding the re-testing, have you talked to Opexa about it? I have never called them since I began the trial, but it seems those who have were well taken care of. We have all put a lot on the line for this, I'm sure a phone call is within your rights.
Peace,
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Postby av8rgirl » Sun Jul 13, 2008 10:00 am

Lars wrote:av8rgirl,
The reason I asked about your IVSM was actually a bit selfish. I went through it in December. It took nearly a month to do anything but then seemed to work to some degree.....until a few weeks ago. I am waiting for my MRTC results and am not willing to set this all back again. Regarding the re-testing, have you talked to Opexa about it? I have never called them since I began the trial, but it seems those who have were well taken care of. We have all put a lot on the line for this, I'm sure a phone call is within your rights.
Peace,
Lars


IVSM has always seemed to help bring me back out of a flare...although it is taking longer and longer each time...I've had so many exacerbations and so much IVSM...I've lost track.

I am seriously considering calling Opexa this week to find out what's going on and to get some guidance from them on the protocol. Answers to questions that I keep posting that no one seems to want to discuss.

I feel like I am hanging out here all alone.


:(
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Postby Lars » Sun Jul 13, 2008 6:59 pm

Answers to questions that I keep posting that no one seems to want to discuss.

I feel like I am hanging out here all alone.


:([/quote]
It's only because we don't know the answer.
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