I cannot believe that some people are looking for results like I have had while on Tovaxin. That these people think they may be on placebo just because they have not seen similar improvements. I don’t think these people ever read my timeline, and if they did, they only saw what they wanted to see.
I have said over 100 times that the hope for Tovaxin is to stop the attacks. There is nothing about disease reversal. If you gain back some lost function, that is great, but it is because your body is rebuilding itself. An indirect affect of Tovaxin is that if it stops the attacks, the body will have the chance to start fixing things without the repairs be continually stripped away.
I have seen posts where I was wheelchair bound, and after the first treatment of Tovaxin, I was able to walk. The truth is, I did have my own wheelchair that my parents used to wheel me around on long outings and when we would travel to Houston.
If we fly Continental, it can be over a mile at each end, and in Detroit, there are no electric carts. When the gate is far away, my parents still insist on pushing me. I no longer complain about being pushed, because I know I could walk it if I had to. I still have some fatigue, so why waste the energy on getting to the gate.
I had just turned 26 when I got my first treatment. I did see some improvements during the first month, but it was that I could now feed myself and pick up a full glass. I am having trouble understanding why someone is looking to have the same results that I have had. I don’t think any of you are in as bad a state as I was and most of you are older than 26.
My family watched me like a hawk, noting each little change or new accomplishment. I even wrote that I realized I had some improvement because I was able to peel a shrimp. Golly, maybe next week I will be able to do brain surgery. I am much better now than when I started the study, but if my family had not keep such a detailed timeline, I wouldn’t remember the specific improvements, and if you asked me how I was doing, I would only be able to say that I have improved. Here is a list of 18 improvements listed on the website.
1. Feed himself
2. Cut his own food
3. Drink from a glass instead of a drink bottle
4. Walk much better and much longer can probably walk a mile
5. He doesn't thunder down the stairs
6. He can walk down inclines
7. His tremor has decreased
8. He has gone from not being able to make an X to signing his name and writing notes in cursive
9. He has less fatigue and feels he could work a full day
10. He can play catch
11. His small motor skills are slowly returning he can open small sauce container, peel shrimp, color Easter eggs, hang Christmas ornaments, go fishing, tie his shoes, zip his coat, etc.
12. His EDSS has dropped from 5.5 all the way down to 3.0
13. He gave his wheelchair to our Grandmother
14. He can beat us in a game of pool
15. His eyesight has returned to 20/20
16. He has gone from 2 or 3 attacks per year to zero attacks since November 2003
17. He has gone by himself to visit friends in San Francisco
18. He has gone from being dependent upon help from others for most things, to independent
As you can see, there is nothing earth shattering in the list. Oh boy, I can zip my coat. Believe me I am thrilled that I can zip my coat, but why people think I have had this miraculous improvement puzzles me. The change in EDSS may be what catches everyone’s attention, but the biggest drop came from my telling the doctor that I felt I could work a full day.
When Sweetyhide tells her neurologist that she has gone from sleeping 13 – 14 hours a day down to 7 or 8, she will see her EDSS drop significantly. Bob’s wife had an EDSS change of 2 ½ points after the first treatment. It took years for mine to come down that much, and mine still bounces up and down a little.
Jane the Pain has had so many things improve that I won’t even start to list them. Mike is convinced he is moving in the right direction and is no longer thundering down the hall. Now there is an improvement that I can relate to. Heather feels that she is on a similar path like Bob’s wife. It sounds to me that all of these people are doing better than I did. I have had 15 treatments over 3 ½ years.
When I was having attacks, all I hoped for was that the attacks would stop. I could live with the damage, just don’t let me get any worse. Don’t look for injection site reactions; don’t look for disease reversal; look for the attack to stop, anything else is a bonus.
Quote from JCML
On June 5th I went in for round two of the shots. Still no site reaction although I was very slightly sore at both injection sites, but really very little. I keep looking for somebody in here that is in the Tovaxin study that is doing REALLY well, something like Tim's kind of turn around story. Does anyone know of somebody in this study that is experiencing a great turnaround? It would be great to hear from somebody like that.
Still no injection site reaction; didn’t you read my thread on injection site reactions. After 15 treatments, I have never had an injection site reaction. It is an unfortunate myth that I started by mistake when I had a reaction to a Band-Aid. I posted that I had had an injection site reaction and it took 6 months for my doctor to decide that the reaction was due to the Band-Aid. By that time, enough people had read the post and the legend of the injection site reaction was born.
JCML keeps looking for somebody in the Tovaxin study that is doing REALLY well, something like Tim's kind of turn around story. Sweetyhide, Bob’s wife, Jane the Pain, Mike, and Heather all appear to have already surpassed me or are on track to do so.
It is like I have become an MS legend. People tell stories about me as they sit around the campfire. I wouldn’t be surprised to hear someone singing the ballad of Timmy Tovaxin. By now, I hope you realize that I am thrilled for those of you that are seeing improvements, but I am worried that everyone is expecting a “Tovaxin Miracle”.
And now for another misconception – I have seen it posted many times how lucky I was, because I was getting the “real thing”. I have never once seen anyone add to that fact that when I started the trials, Dr. Zhang had only shown a 40% reduction in attacks. I went into the trials because my father thought Zhang’s approach to the problem had the best chance of success. I would call this the anti-placebo effect. I was hoping the attacks would stop, but was expecting to still have at least 1 per year.
RESULTS WILL VARY!