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Old 07-06-2008, 01:40 PM #61
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If you will notice I already have that posted the article in with the post I put up of all the other links pertinent to the treatment.

I didn't put up all that stuff trying to up my hits on my website I just put it up there so rather than trying to find all the stuff you could go to 2 websites that is centralizing all the info.

www.chrishadms.com

www.gothicy.com

I will be in another article in Aug/Sept JH alumni magazine and we will be putting that article up as well.

Folks I am not doing this to look cool...I'm doing all this to make it easier on all of you!
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Old 07-06-2008, 01:45 PM #62
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Quote:
Originally Posted by chrishadms View Post
See...your data is skewed because of the small study. It looks way worse.

You can call JH and they will confirm this:

All 9 of the patients stopped progressing over the 2 years even though some of them did need to be retreated. 7 of the 9 over the 2 years improved in all MS testings. The 2 that didn't improve, but got no worse, were late SPMS /PPMS. ( I hate those terms)

All 9 in that first trial stabilized, some after retreating. 7 of the 9 folks got better to some degree. Most were EDSS of 6 and after 2 years were close to a 3. They learned a valuable lesson about axonal death and neutrophils and the correlation with MS cells because of two of the folk who needed to be retreated in this trial.
It's not my data, it's their's . . . but I agree nine people is not enough to prove statistical significance. Twenty-one people were screened for that trial, but only 9 were accepted. Part of that protocol included that they had to be:

- Aggressive RRMS
- 2 or more gad-enhancing lesions
- 1 exacerbation in the preceeding 12 months
- no exacerbation in the last 3 months

*The median age at time of entry was 29 yrs old.*

Two of the people received either steroids or rituximab during the follow-up period, and the trial did not count exacerbations that did not SHOW active inflammation, by way of a MRI. I don't think this is an accurate assessment, since we already know that a HUGE % of lesions are not even visible on a MRI . . . but whatever. Either way, I think it would be fair to take those two out of the equation, since it was likely the other treatments they used helped to reduced their EDSS.

Of the 7 remaining, two saw no improvement in EDSS, but no advancement either. That is not necessarily uncommon for someone with early RRMS.

Some saw substantial improvement in EDSS, as much as 100% in one case.

Their gad-enhanced lesions seemed to stabilize quite a bit over this period, but this reduction did not seem to correlate with a reduction in EDSS, ie. even if they had/did not have Gad-enhancing lesions, their EDSS still fluctuated.

Sorry, I don't really have time right at the moment to analyze all the information in detail, but here it is:

http://archneur.ama-assn.org/cgi/rep...noc80042v1.pdf

Cherie
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Old 07-06-2008, 01:47 PM #63
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Quote:
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Unless you two don't want to be confused with facts.....read the link, I posted..
I did read it, but I didn't see anything on these stats . . . What did I miss, Sally?

Cherie
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Old 07-06-2008, 02:02 PM #64
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Quote:
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Unless you two don't want to be confused with facts.....read the link, I posted..
Thank you Sally.

Chris...it's great that you are so gung ho about this and you are doing well...but you have to understand that not every treatment works for everyone.

The number of people on this treatment is not enough to call this a cure. Even the scientists who are administering Reimmune who are "just playing by the government rules" as you call it, are not saying it is a cure for MS. (if they are, I've missed it. I believe they are calling it a potential cure.) It's a treatment in the trial stage.

This is sounding like the arguments that took place when Tysabri first hit the market, then was pulled, and came back on the market! It's a cure, it's the best treatment on the market, it's efficacy is better than all the other DMD's out there. Well, yes and no. It depends on who is taking it. It works for some but not for others.

Chris, you know that about Tovaxin. If you don't produce MRTCs, it won't work for you. You can't get the vaccine made. And not everyone with MS produces MRTCs. And even if they do, not everyone produces them in the quantity to make the vaccine. So they move on to something else.

The facts can speak for themselves about Revimmune...we don't have to debate the facts.

We can discuss the facts like rational adults. We all know from experience that what works for one person may or may not work for another.

We are all in this together. Let's work on it together. We don't have to agree, but let's not beat each other up about it. It's just not productive.
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Old 07-06-2008, 02:47 PM #65
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From "'Rebooting': A promise for Autoimmune Diseases" in Johns Hopkins' Health Insider on Wed., July 2, 2008.

Dr. Brodsky cautions that, before this can be called a cure, the patients must remain disease-free for ten or more years.

http://www.gothicy.com/content/view/27/34/
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Old 07-06-2008, 03:12 PM #66
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Quote:
Originally Posted by chrishadms View Post
If you will notice I already have that posted the article in with the post I put up of all the other links pertinent to the treatment.

I didn't put up all that stuff trying to up my hits on my website I just put it up there so rather than trying to find all the stuff you could go to 2 websites that is centralizing all the info.

www.chrishadms.com

www.gothicy.com

I will be in another article in Aug/Sept JH alumni magazine and we will be putting that article up as well.

Folks I am not doing this to look cool...I'm doing all this to make it easier on all of you!
Chris, I don't think anyone is debating that!!!

Anyone in a clinical trial should be applauded! It's cutting edge technology!

Thank you!!! And thank you to Keri! And the rest of those who are trying this therapy. It gives hope to those of us who have failed, or have been failed by, the current treatments available.

We are all lab rats!
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Old 07-06-2008, 03:37 PM #67
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There's an article about HiCy on the front page of the 6-24-08 edition of The Sun ( Baltimore ) newspaper. A neighbor of mine, who for some reason got this paper ( that's not our local paper. We're in SE,PA ), brought it over to me today just as I was reading this thread. The article features Richard Bauer , the same man in the article ( and pic) in the link Sally provided. Just an FYI, that's all.
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Old 07-06-2008, 03:48 PM #68
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Quote:
Originally Posted by lady_express_44 View Post
I did read it, but I didn't see anything on these stats . . . What did I miss, Sally?

Cherie
I didn't mean stats, Cherie.. Stats don't mean a lot to me....I'm a, proof is in the pudding, type of scientist..
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Old 07-06-2008, 03:51 PM #69
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Originally Posted by Av8rgirl View Post
Thank you!!! And thank you to Keri! And the rest of those who are trying this therapy. It gives hope to those of us who have failed, or have been failed by, the current treatments available.

We are all lab rats!
Yes, Chris, Thanks very much, to You and Keri..
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Old 07-06-2008, 04:51 PM #70
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Well unfortunately this is not a drug for just MS. If you have an auto immune disease. This is not for any certain type of MS. It is for MS

Rob and Doug will both tell you this would probably work for any MS to stop it. However to get the results the FDA wants and ABPI wants (as it is with most MS therapies) they only want the folk with showing MS because they are the ones that will show the most improvement.

The simple fact is if you have MS and you have lesions ad disability this is the only thing out there on the market covered by insurance that promises to heal them and restore lost ability.

Why would you want to spend years suppressing your immune system with immune modifying therapies that are that hard on other body parts? This is a one time killing off of the immune system, then letting your own body fix the damage. This will also provide less issue's over time for those of you wondering about toxicity. HiCy doesn't hurt your bone marrow / stem cells.

This is the only therapy that allows your body to repair. I simply gave you all the info to make a decision. I personally could care less if you guys took advantage of this but in 2 years when your neuro asks why you didn't do it sooner if you knew about it and had the opportunity instead of waiting for 2 more years of disability, I pray your answers are as satisfying to you as the people who are getting better are to me.
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