I don’t think that the people at Opexa can explain why I had a significant disease reversal. I have never asked anyone about my decrease in EDSS. I was pleased; they were pleased.
I think human nature is to question when something bad happens, and not to question when something good happens. When you are getting treated for something, you expect the bad things to stop (attacks). My expectation (hope) was that I would not get any worse. I had no expectation that I would regain some lost function.
I have said that I have a very aggressive form of MS. I only had a brief remission after my first 2 attacks. After that, each succeeding attack produced more disability. I was steadily climbing the EDSS ladder. Although I am classified as RRMS, it was thought that I might have already transitioned into SPMS.
From when my father first thought there was something wrong to my first treatment of Avonex was about 4 months, record time of diagnosis according to the Chair of neurology at University of Michigan. Within 3 years of diagnosis, I was receiving Tovaxin.
Here is my guess as to why my symptoms started improving within the first month. My MS was very active, and the depletion of some of the MRTCs caused by the first treatment of Tovaxin was like going into the remission phase of RRMS. I was in the low dose group and that amount of vaccine did not drop my MRTCs to zero, but it significantly reduced them. This significant reduction would be similar to the waxing and waning of MRTCs in someone with early RRMS.
For me, reducing the MRTCs caused my symptoms to subside. That would be similar to anyone who has had an attack and when the attack is over, they return to a level a little worse than before the attack started, but significantly better than the low point during the attack.
I continued receiving Tovaxin at regular intervals, which I assume kept me in the remission phase. When I was moved into the mid-dose group, my MRTCs did drop to zero. I was not told that, but the study data states that all mid-dose patients had their MRTCs drop to zero.
I have always said results may vary. You can only expect to have results similar to mine, if you have the exact same disease scenario as I have, and I would be surprised if anyone of you had your EDSS go from 0 to 5.5 in 3 years. I know that every unusual feeling makes you wonder if an attack is starting. The hope for Tovaxin is that it will stop the attacks. There is nothing in the vaccine action that would suggest that you will regain lost function.
Many, if not all of you, are looking for some kind of sign, feeling, or reaction. On 4/30/07 I received my 15th treatment of Tovaxin, and I have never had any redness at the injection site caused by a reaction to the vaccine. I have seen many posts where people who are getting into the current study are hoping to see redness at the injection site, and I am 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 my 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.
I had one false alarm about an injection site reaction. I thought I had an injection site reaction and posted it on my website. It turned out that the redness was caused by a reaction to the Band-Aid. Unfortunately, so many people read that before I went back and corrected the post that it has become imbedded in many people's mind that they must have an injection site reaction or they are in the placebo group. I have never felt anything after receiving an injection, nothing on the day of the injection, nothing on the next day, nothing different at all. If you are expecting to feel different or notice sometime, I am afraid you are going to be disappointed.
It typically takes 3 treatments of Tovaxin to bring the MRTCs down to zero or near zero. Until the number of MRTCs is reduced to near zero, they are still floating around and possibly nibbling at you myelin. It is possible that the memory white blood cells that produce the MRTCs might decide to produce several million and overwhelm the vaccine produced T-cells that eliminating the MRTCs. In that event, you might experience a slight attack, only a guess. The attacks should stop when the MRTCs have dropped to zero.
I have been asked many times why aren’t more people sharing their Tovaxin experience on the web. I think people are more interested in asking questions than telling the world how they are feeling. Here is a blog of someone who is in the study. http://360.yahoo.com/profile-LILKV50ibK ... 9Zl&r=
I have seen a few blogs where there is some information about how they are doing, and then nothing. The pessimist might think that the person had become too disabled to write anymore or had died. I am an optimist. I would like to think that the person is doing much better and is out enjoying him or herself and no longer wanted to sit in front of a computer.
Maybe someone should start a list of websites and blogs of people in the Tovaxin study. I would only include those who have had their first injection. I have seen several blogs by people who wanted to get into the study, but unfortunately did not qualify.