NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   RR,SP,orPP...who, what, when.... (https://www.neurotalk.org/multiple-sclerosis/49256-rr-sp-orpp.html)

Lyon 07-07-2008 10:05 PM

Quote:

Originally Posted by chrishadms (Post 317368)
Well I know of of two people who quit the Tovaxin trial to do this and they were getting the real thing.

Only for the purpose of dragging this thing back a little closer to reality, not only has Lew not quit the Tovaxin IIb to date, but PVMS was removed from/quit the Tovaxin trial before entering the extension phase, therefore no reason exists to believe that he'd been getting the "real thing".

Bob

tovaxin_lab_rat 07-07-2008 10:29 PM

Quote:

Originally Posted by Lyon (Post 318147)
Only for the purpose of dragging this thing back a little closer to reality, not only has Lew not quit the Tovaxin IIb to date, but PVMS was removed from/quit the Tovaxin trial before entering the extension phase, therefore no reason exists to believe that he'd been getting the "real thing".

Bob

Thank you Bob. I had already posted that I had asked Lew about quitting and he said he hadn't to date.

I didn't know the circumstances of PVMS ending his participation in the trial.

starfish 07-07-2008 10:30 PM

I was at the pediatrician's office last week and the nurse wanted to know why I did not want my daughter to get the Merck Gardasil vaccine. I am a stock holder by the way.

I told her it has not been out on the market long enough for me to trust it. Bingo, today I hear a blurb about problems with it. Apparently it was known 2 years ago that the aluminum in the vaccine caused neurological issues.

Now there have been 8,000 reported cases of reactions, with 18 deaths and several paralysis reactions.

http://www.newsinferno.com/archives/3399 Sure enough my stock took a hit today. That is the nature of the drug business.

Chris, when you have been around for a while, you learn to sit back and take things in, look for other people's wisdom, which is what I think these forums are all about. I understand your enthusiasm for HyC at your young age and at your rate of progression.

I think what we all hold sacred, is that we all know our own bodies, we believe in listening to our own intuition about which path is best to follow, and we honor other people's choices.

My understanding is that the HyC treatment will not be considered a cure until it has not reared its ugly head for 10 years in a person. So While we are hopeful for you and Kerri, we know there is still much to be learned.

lady_express_44 07-07-2008 10:47 PM

Quote:

Originally Posted by Lyon (Post 318147)
Only for the purpose of dragging this thing back a little closer to reality, not only has Lew not quit the Tovaxin IIb to date, but PVMS was removed from/quit the Tovaxin trial before entering the extension phase, therefore no reason exists to believe that he'd been getting the "real thing".

Bob

Hey Bob, nice to see you. :)

I recall something about them shutting down the Tovaxin location where Chris was involved in the Tovaxin trial . . . perhaps something to do with money or problems with the site. . . ?? I don't recall him dropping out voluntarily. :confused:

Cherie

tovaxin_lab_rat 07-07-2008 11:07 PM

Quote:

Originally Posted by lady_express_44 (Post 318184)
Hey Bob, nice to see you. :)

I recall something about them shutting down the Tovaxin location where Chris was involved in the Tovaxin trial . . . perhaps something to do with money or problems with the site. . . ?? I don't recall him dropping out voluntarily. :confused:

Cherie

There was one site that was closed down due to protocol problems. There were 4 people at that site and I believe it was in Alabama. It wasn't voluntary and Chris has moved on and doesn't want anyone to dwell on it.

lady_express_44 07-07-2008 11:21 PM

Quote:

Originally Posted by Av8rgirl (Post 318200)
There was one site that was closed down due to protocol problems. There were 4 people at that site and I believe it was in Alabama.

So, do you know if that was that was the same Chris, from that location?

Cherie

tovaxin_lab_rat 07-07-2008 11:22 PM

Quote:

Originally Posted by lady_express_44 (Post 318209)
So, do you know if that was that was the same Chris, from that location?

Cherie

It was PVNS Chris from Alabama, yes.

kicker 07-08-2008 11:04 AM

Quote:

Originally Posted by starfish (Post 318166)
I was at the pediatrician's office last week and the nurse wanted to know why I did not want my daughter to get the Merck Gardasil vaccine. I am a stock holder by the way.

I told her it has not been out on the market long enough for me to trust it. Bingo, today I hear a blurb about problems with it. Apparently it was known 2 years ago that the aluminum in the vaccine caused neurological issues.

Now there have been 8,000 reported cases of reactions, with 18 deaths and several paralysis reactions.

http://www.newsinferno.com/archives/3399 Sure enough my stock took a hit today. That is the nature of the drug business.

Chris, when you have been around for a while, you learn to sit back and take things in, look for other people's wisdom, which is what I think these forums are all about. I understand your enthusiasm for HyC at your young age and at your rate of progression.

I think what we all hold sacred, is that we all know our own bodies, we believe in listening to our own intuition about which path is best to follow, and we honor other people's choices.

My understanding is that the HyC treatment will not be considered a cure until it has not reared its ugly head for 10 years in a person. So While we are hopeful for you and Kerri, we know there is still much to be learned.

Starfish,
I had my 15 year old vaccinated begibbinf 01/07. Shr didn't react at all, not even a raised spot, going to call her doctor ASAP. Is it teen summer sleep late (her Twin brother sleeps later,) but as a mom I'm freaking out. I, her Mom, have an auto-immune disease. Now she might have something. I am fraking out.

kicker 07-08-2008 11:08 AM

The office is closed for lunch, have to call back.

RedPenguins 07-08-2008 11:53 AM

PVNS/Chris is staying in the apartment upstairs from me in Baltimore :) (we also shared a nurse over the weekend!) tee hee.

As for Tovaxin, I didn't consider trying it as I couldn't handle the idea of receiving a placebo over real drug. I know that is the point of studies....but I just wasn't able to go there.

However, as I'm doing just "too" well from the chemo, I have joked with the nurses that maybe they gave me a saline solution instead of chemo! :eek: They assure me that is not the case....more likely it's just that I'm some weirdo freak of nature who didn't have any reaction to the chemo. Of course, I'm not out of the woods yet.

Also, just a note - the docs at JH *never* told me this was a cure for MS, nor did I expect to wake up the next day and not have MS. I personally think that is a load of bull - b/c even with cancer, a person doesn't undergo chemo and then the next day be in remission from the cancer. It just don't work that way! Wish it did....but I live in some sort of reality I guess.

BTW, everyone has said I looked better on days 3&4 of the tx than on days 1&2...and I think this is because they also gave me iron infusions. My docs have previously said that I was anemic, etc. - to take iron supplements - which I had - but it never made a dent. Well, I guess when JH kept seeing my blood tests show such low iron, they hooked me up. I sure wish they did that back at home months ago! I think it's made a huge difference.


~Keri


All times are GMT -5. The time now is 12:59 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.