My Tovaxin Experience so far

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby IHaveMS-com » Fri May 25, 2007 12:14 pm

Then the cell phones and beepers came along and people at my company would actually expect me to get things done when I was on my way up there.


Why don't you contact your representative and have him/her sponsor legislation making it a ticketable offence to talk on a cell phone while driving. Many states currently have that.

Then change your outgoing message to, "I am sorry that I am unable to take your call. I may be driving and I am sure you would not want me to put myself or others at risk just to answer some stupid question you have that probably is so trivial that a 5th grader knows the answer."

Maybe next we could discuss the good old days, before remote controls. When you had to get up to change the channel on the TV. We lost the remote for the set in Wisconsin, but since we can only get 1 channel, I guess it doesn't matter. That was the next miscellaneous thoughts that popped into my head.

I hope everyone has a safe and pleasant weekend. I think I will go fishing. I won't bring my cell phone with me. Not because I don't want to be disturbed, but because I still have a tremor and I might drop it in the water. Anyone reading the ramblings that I just wrote should go re-read the post that started this thread, ThatIsMS.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Fri May 25, 2007 12:29 pm

IHaveMS-com wrote:I hope everyone has a safe and pleasant weekend. I think I will go fishing. I won't bring my cell phone with me. Not because I don't want to be disturbed, but because I still have a tremor and I might drop it in the water.
:lol: Accidentally, right?

I forgot about not having remote control. At this point it seems that it would be a terrible burden to have to get up from the couch every time you want a different channel. I'm not entirely against technology. In fact I consider the TV remote control and Pringle's are the two greatest inventions of the 20th century!

Bob
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Postby Lars » Fri May 25, 2007 4:59 pm

I haven't checked the forum in a while, interesting thread about gadgets. Maybe it's the damn gadgets that gave us all MS. Possibly this computer, gotta go.
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Postby Lyon » Sat May 26, 2007 9:41 am

Lars wrote:Maybe it's the damn gadgets that gave us all MS.
Hi Lars,
I suspect that, at least to some degree, you are kidding, but if you look into the "hygiene hypothesis/loss of evolutionary normal conditions" leading to the incidence of autoimmune disease, you might find that your statement isn't that far from the truth.

No, cell phones and computers specifically didn't lead to MS but it becomes almost obvious that the situations which constitute our modern lifestyle did.

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Postby IHaveMS-com » Sat May 26, 2007 10:04 am

Is it a cause of modern life, or a result of it. Many people who were previously diagnosed as have a bad case of asthma are being diagnosed with cystic fibrosis in their 40's and 50's. Ignorance may not be bliss, but our increased knowledge may be a component of your theory. Fifty years ago, a student who couldn't keep still in class just had too much energy. Today, that same student would be classified as ADHD.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Sat May 26, 2007 10:51 am

IHaveMS-com wrote:Is it a cause of modern life, or a result of it.

Hi Tim,
"Result of it" is accurate. In hindsight the word "hygiene" in the hygiene hypotheis is an unfortunate and not completely accurate description this new field is stuck with.

It leads people's minds in the wrong direction because they of course associate it only with cleanliness and not necessarily the loss of the living conditions humans had evolved with. We pride ourselves with the eradication in the last century of many diseases which had plagued humans since time began. Without a doubt that is a good thing but it now seems that everything has it's price and in this situation it seems like the increased incidence of immune dysfunction is the price.

Most people are convinced that the importance of defining the cause of MS is in the fact that the cure almost always involves creating the inverse of the cause. Heck, I used to believe that until recently. In this case I don't think knowing the cause of the autoimmune diseases will lead to a cure....at least not one which society will find acceptible. At least not in the near future :cry:

I don't want to go into detail but the neuro found on Wednesday that my wife's EDSS had gone down substantially. Do I have time to email you before you go on your trip?

Bob
Last edited by Lyon on Sat May 26, 2007 4:33 pm, edited 2 times in total.
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Postby IHaveMS-com » Sat May 26, 2007 11:02 am

I don't want to go into detail but the neuro found on Wednesday that Jamie's EDSS had gone down substantially. Do I have time to email you before you go on your trip?

Yes

Nice to hear about the positive move. Lets hope that means that the MRTCs have stopped nibbling and are moving towards zero.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby IHaveMS-com » Sat May 26, 2007 11:04 am

I am going out for a while. I will check email after dinner.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Sat May 26, 2007 11:26 am

Actually I should probably follow through now that I've written what I have so far.

It's illogical to assume that stopping MS in it's tracks is synonymous with decrease in disability/lowered EDSS. I can see how in the most favorable conditions it would happen....youth and more recent disability would be the obvious favorable conditions, but my wife is 47 years old and I imagine the disability has been lurking under the scenery for years.

On the other hand, her EDSS has been done 3 times and I've been right there watching with sceptisim, knowing that it would be adventageous to the study to "boost" the EDSS in the beginning and lower the standards in the end, but their assessment has always matched the EDSS chart.

So far in the study the first neuro gave her a 3.0, the second a 3.5 and the second neuro, who also did this last EDSS gave her a 1.0 on Wednesday. Of course I like it, but for me it seems to defy logic in many ways.

The day of her second treatment is too soon, especially for a 47 year old.

All this has made me question things I thought I was sure of. I wonder if placebo effect can actually affect EDSS and not just outward symptoms? I wonder if tiredness or how you feel can affect EDSS, although in this case it would work against her because she was diagnosed with a sinus infection later that evening at the Redicare.

I guess the reason I didn't want to post this earlier is that I didn't want to lead people to false conclusions. I myself have not come to grips with what exactly is going on. It's pee your pants awesome if it's real but I want to stay objective and let time be the judge.

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Postby IHaveMS-com » Sat May 26, 2007 2:12 pm

Hi Bob,

First, two things -- 1) This is super: 2) Results will vary from one person to the next and the hope for Tovaxin is that it will stop the attacks. If you don't get any worse, that is good. If you regain lost function, that is great.

It's illogical to assume that stopping MS in it's tracks is synonymous with decrease in disability/lowered EDSS. I can see how in the most favorable conditions it would happen....youth and more recent disability would be the obvious favorable conditions, but my wife is 47 years old and I imagine the disability has been lurking under the scenery for years.


It would be illogical to assume that when you stop any disease that the body wouldn't immediately start repairing itself. A paper that I read last week reported that after analyzing data of MS brain autopsies, the researchers were surprised to see how much remyelination had taken place. It was significantly more than was theorized.

In another paper from 6 months ago there was a discussion on at what point in life does the body start to lose it ability to remyelinate. The consensus was that the oligodendrocytes, which are the main repair mechanism for myelin, are active well into middle age. It is logical to assume that someone in their mid-twenties would bounce back quicker than someone in their mid-fifties (I realize your wife is 47), but the mechanism for repairing MS damage is active throughout middle age. I am not sure what is the range for middle age, but the standard for old age is usually around 70.

The day of her second treatment is too soon, especially for a 47 year old.


The day of her second injection simply coincided with her EDSS assessment. The second inject did not have time to do anything. I had a dramatic disease reversal in 21 days on a low-dose -- 1/4th of what the does is for the current study. I would have to go back and read my time line, but I think the neurologist noted that I had some improvement after the first injection, but my EDSS assessment was not lower for quite a while.

All this has made me question things I thought I was sure of. I wonder if placebo effect can actually affect EDSS and not just outward symptoms?


In every study where there is a placebo, you will see that a certain percentage of the patients in the placebo group experienced improvement. Personally, I think the placebo effect can make you feel better, but if you have lost some specific ability, the placebo effect will now allow you to do something that you are incapable of doing. The blind will not see and the lame will not walk if they did not already have the ability to do so.

I wonder if tiredness or how you feel can affect EDSS


Absolutely!

I guess the reason I didn't want to post this earlier is that I didn't want to lead people to false conclusions.


A concern I have is that when patients read my timeline or posts like yours and Mike's, they expect the same results. RESULTS WILL VARY.

Now I would like to say, "I told you so", but there is a long road ahead in both this study and the eventual approval of Tovaxin. We will all have to stay tuned to hear what happens next week, next month, and next year.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby IHaveMS-com » Sat May 26, 2007 2:23 pm

My generation has grown up on "have a nice day" and smiley faces. I hate them, but your post deserves one.
:) :D :lol:
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby CureOrBust » Sat May 26, 2007 3:59 pm

bob,

This is great to hear. If its a placebo effect is irrelevent I think for yourself and her. Possibly better if its placebo, imagine how good it would be WITH the treatment.

Surely a change from 3.0 down to a 1.0 would of been EASILY noticeable by yourself and your wife? I am pretty sure I can see the tiiiiiiny improvements I make day to day, or when i am having a bad day.
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Postby Lyon » Sat May 26, 2007 4:26 pm

I'm on the way out the door to buy a new scanner so this will be short (yeah, right!).

Hi Tim, I'm not trying to look the gift horse in the mouth but for my own sanity I'm trying to be as reluctant as I can. There's no doubt it's a good sign but I'm purposely not going to get too excited until some time goes by. I'm a Tovaxin proponent, no doubt, and I've no doubt that Tovaxin is capable of this but Lew was convinced he was on the real thing in the beginning and now he's not so sure. The crazy thing is that my wife is and has been convinced the whole time that she is on placebo so it seems to me that the opposite of the placebo effect should be happening.

Hi Cure, I agree. Even if it's placebo effect, it's a good thing. I play slop pool and I'll gladly accept placebo effect!

As far as noticing improvement, that's something I've been mentioning since the beginning. My wife's MS is a horse of a different color in that heat doesn't affect her. In fact she likes it. She complains of fatigue but at the mall, Las Vegas or Disney World she walks my ass into the ground. She stays up all hours of the night. Sure she has tingling and MS hugs but she has no outward symptoms to improve. Despite that, I watch the EDSS tests and see firsthand the disability they point out. It sickened me the first time because I was convinced until then that she had no disability. Must be this time her times sped up a bit and abilities improved. I didn't go in with her this time for the EDSS because that stupid tape about adding the numbers drives me insane.

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Postby IHaveMS-com » Sat May 26, 2007 5:57 pm

I'm not trying to look the gift horse in the mouth but for my own sanity I'm trying to be as reluctant as I can. There's no doubt it's a good sign but I'm purposely not going to get too excited until some time goes by.


Here is a new rule to go along with the 4-day rule.

The 2-visit rule: if your EDSS changes and stays changed for 2 neurological assessments, then it should be taken seriously. The change can be either up or down, but this probably applies more to improvements.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Sat May 26, 2007 7:14 pm

IHaveMS-com wrote: The 2-visit rule: if your EDSS changes and stays changed for 2 neurological assessments, then it should be taken seriously. The change can be either up or down, but this probably applies more to improvements.
Hi Tim,
Thanks! That sounds like a reasonable rule and I think I will use it. If her EDSS is still low the next time they asess her I'll be excited beyond belief!

The neuro in the Michigan leg mentioned that she trained under Dr Kurtzke at Georgetown so there isn't much doubt that she's capable of an accurate assessment.
Bob
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