I will explain it like I told Dr. Kerr.

If someone found an actual working treatment to the common cold, wasn't fun but got you better and maybe made it so you didn't get sick again, wouldn't you tell everyone too?

This fixes MS. I know what I just said really upsets some folks because they need the next 2 years and the FDA to tell them something works.

This works. Wait till it's the norm but I just hope no more disability sets in by then.

I don't make a dime off this. I just like watching people who were worse off than me get better!

Chris....saying stuff like that will make you unpopular. I like you and have followed you at thisisms and now here. Don't spoil it by making condescending remarks like that.

We are a smart bunch of people here and can read and take in the data and make decisions on how we treat our MS. You can't push it on us. You can put the data out there, inform us about this new treatment, and let it go at that. But when you start putting people down for not following your advice, that's just not a good idea.

And just b/c two people have quit Tovaxin doesn't make it a bad drug. It just didn't work for them.

How many people have quit Tysabri? Betaseron? Any other medications?
I quit Beta and I quit Copaxone. Does that make those drugs bad? No, they just didn't work for ME.

As I already stated, Chris, your enthusiasm is to be applauded. But don't ruin it by being pushy and putting down other people's choices. This is just too new to be accepted by everyone right now. And you also have to take into consideration that not everyone CAN get in for treatment, even if they wanted to!

Just tell us how you are doing and let those who are interested ask questions and don't be so negative to those who are skeptical. It's not productive. :)

I am really tired of your condescending posts, Chris. HiCy/Rev is not a proven cure for MS and your touting it as such, is not fair to us poor dumb slobs, who know no better..:rolleyes:

I am happy for your improvements and I hope they continue. Please report back here, when you have more good news and thank you for being a pioneer in this fight against MS.

I am looking forward to RedPenguin's updates and yours, as well.

:Good-Luck: :Wave-Hello:

Sorry folks I am not neuro that is going to sugar coat things and tell you there is nothing out there when there is.

Who is condescending.. I ca give you the info of two people who quit Tovaxi to do this. Oe of them is known as Chris S, (PVNS on thisisms and one of the starters of the Tovaxin forum) is in JH right now getting it and another gentleman by the name of Lew or Loobie from the same form who is quitting to do this.

Sorry folks if you don't want me to tell you stuff that isn't true to ma ke you feel better it's not going to be me. I put up with that for 4 years from 3 different doctors and assured myself and others I would't do that ever.

If you don't like me stating the truth do this.....When you see I posted something don't read it!

Problem solved...I am only talking to those who don't need sugar coating.

If you don't like what I say don 't read it.

As to your original post, it is true that the MS labels were devised by doctors wanting to place 'like afflicted' subjects into groups for research study. With the possible (or probable, depending on who you listen to) exception of PPMS, the labels don't indicate different diseases. Nor do they represent different sequential stages of MS. They simply represent the course MS happens to be taking in a particular individual at a given time.

Your movement from one 'label' to the next is not inevitable, nor is it even remotely predictable. As more and more people are diagnosed, the MS labels are falling more and more into question, which is fine with the people who came up with them the first place.

My favorite quote: labels are for FOOD. Not people.

Regarding this...

...I don't personally find it condescending, I find it indicative of the fact you're not being particularly objective (not as objective as you seem to want to appear, anyway). Like many here, I wish you good health. Also like many here, I'm reasonably - intelligently - critical of anything being touted as a cure. What you've discovered is what works for you, what works for some other people, and what you really need to believe in right now. Is it worth exploring? Testing? Questioning? Absolutely! Let the process continue - but right now it's a far cry from a cure.

Chris,
The good news, your enthusism gave me a push to be as pro-active as I can be, but I know limits and realities.

The bad news - you come on too strong. Some can't tolerate the procedure; I know myself and several others, even if we lived in JH ,would not be accepted for treatment. I'm not stupid or bull-headed, I just can't have it, no one will let me have it. No matter who thinks differently, I can't. Like an accident on the highway you can't look away from, I see a new post on this thread and go in again. My bad. OK, we get it, HyCy good for you, not for me, now matter how much I want life to be different.

I do believe ther I do believe there are different types of MS. Lesion inflamation ( not one of my MRIs shows any enhanced lesions), lesion load and vicinity, course of disease and stuff. My beliefs are as valid as yours.
Dr Kerr would take one look at my MRI and not accept me.

Hope is great, but not when it's not for you.

Of course I'm glad it worked positively for you, but I'd be lying if I said I wasn't a little sad for me.

When did Lew quit? As of yesterday he hadn't quit yet. He was going to talk to his doc. I haven't been to the forum today to read but unless he has posted something today, that's news to me!

We don't need anything sugar coated, Chris. That's not what we are asking for. But we don't need this crammed down our throats either.

You're not getting it. As Kicker said, some people cannot tolerate the procedure. Are those of us who are "choosing" to be pioneers for other clinical trials ignorant? Should everyone be lining up at the door to get this treatment? Is that what you are saying?

Chris, this is not about our rejection of "the truth", our desire to wallow in MS misery, or our failure to consider something that may help us such as Revimmune. This is about your disrespectful and completely ungracious behavior on this board. It's about getting along with others and being courteous. That's all.....

Back to Chris' post about Lew quitting the Tovaxin trial. I asked Lew. He has NOT quit Tovaxin. He is still in the trial and wants to stay in and see if it is going to work.

He has, however, talked to the people at JH and asked about HiCY.

Two people have not quit Tovaxin to go to HiCY. Ask and verify.

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.

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.

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.

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

Cherie

It was PVNS Chris from Alabama, yes.

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.

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

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

Keri, don't look a gift horse in the mouth ( yeah, like that saying makes sense :rolleyes:) But I am glad you haven't had a reaction.

Since you haven't heard the word "cure" apparently something has been lost in communication along the way or someone has misunderstood - thanks for letting us know.

I am really glad to hear how well your doing and thank you for the updates :hug: