Delving into rebooting

shucks · Post by **shucks** » Mon May 23, 2011 5:49 pm

Whether it is autoimmune or not, don't the numbers pretty much show, at over 80% stopped and a huge chunk having improvement at 5yrs, that whatever it does must work? I'm not picking a fight, just trying to figure out what is in my best interest. I am a poor government trial lawyer who is scared he' losing the only thing he's fit to do through disability, which on one hand means I'm more likely to grasp at straws than some folks, and on the other more motivated than some folks, and each of those can be a double edged sword. I love to know what you guys think. I'm progressing faster than I should be, and I'm worried. I dont have much money, but might be able to swing something with some community fund raising if it is worth it. Is it?

Please don't hold back..
and thanks.

Post by **jimmylegs** » Mon May 23, 2011 6:52 pm

shucks, just curious, have you read all the lit on nutritional imbalances in ms patients?

shucks · Post by **shucks** » Mon May 23, 2011 7:24 pm

I have read some, and I think it is really neat stuff. I'm not sure through my reading that It can do much for me but will read each of these sites and get back with y'all

raven · Post by **raven** » Tue May 24, 2011 6:38 am

Hey Lyon,

Count me in for your merry band ( Heck I thought a Zamboni was something you flattened an ice rink with

)

I think there's some confusion between HSCT and stem cell treatment. HSCT is an extreme reboot of the immune system. Stem cell treatments as far as they go appear to be aiming to repair lesion damage. In an analogy I once used, that appears to me to be equivalent to re-plastering the ceiling without fixing the leaky roof....

Still doing well, and a big HI to Ian, long time no see....

Robin

Lyon · Post by **Lyon** » Tue May 24, 2011 11:45 am

raven · Post by **raven** » Tue May 24, 2011 1:09 pm

There's something I've been meaning to say for a while but never got around to. I am very happy to talk about my experience with MS, my treatment and subsequent outcome. However there is a huge caveat that sits alongside that. I have always made clear that my experience is purely anecdotal, I am perfectly comfortable discussing what has worked for me. What I will not do is extend that to say "this will work for you". I am not qualified to make that assertion and if I did I would then take responsibility for your condition. This is what upsets me about the current proponents of CCSVI and past proponents of antibiotics, stem cells and even goat serum. I do know that Ian / Bromley was in a really dark place and my treatment / outcome had some influence on his decision ( Ian, I hope you don't mind me talking about this but even if I didn't influence your decison my impression that I did is still valid ). I agonised over a few sleepless nights about whether I was steering someone towards a treatment that I had no evidence other than my own conviction would work. I don't see that same distinction with the current cheerleaders for CCSVI. Fine, it may have worked for you. Frankly I don't know and really don't care. What I do care about is when you recommend someone else to go for the treatment are you prepared to stand behind them? Will you re-imburse them the cost of the treatment if it doesn't work? Will you guarantee them that they will not have complications from the treatment? If not then restrict yourself to the anecdotal "this has worked for me". To do anything else does a huge disservice to the cause of anyone unlucky enough to be diagnosed with MS.

This may be a "swan song" for me and I'm ready for the angry replies from the multitude of CCSVI cheerleaders but hey, I have nothing to prove and certainly have nothing to gain.

R.I.P Lyon and Raven...

Lyon · Post by **Lyon** » Tue May 24, 2011 2:04 pm

robbie · Post by **robbie** » Tue May 24, 2011 2:45 pm

if the immune system is reason for MS
and you take a small group of people at the same stage of MS, for Campath say aggressive RR and this drug completly reboots the immune system how can it only work for some and not others of that group?

shucks · Post by **shucks** » Tue May 24, 2011 3:23 pm

I'm kind of lost, maybe some brain fog I guess. Which treatment did you go with and why, and did it work? Those are the questions tat I find helpful and interesting here and other places. I am researching all treatments right now, and as a result I am very interested in hsct right now, as it looks like an affective long term treatment right now from what I read. if proponents of other treatments like them, let them say why and it will all be out there in the open.
Which treatment did you have again raven, and did it help and how much. That should be the discussions we're havng I think, though I dont know much about yalls merry band.

Lyon · Post by **Lyon** » Tue May 24, 2011 6:29 pm

moonsky · Post by **moonsky** » Tue May 24, 2011 6:39 pm

I would really appreciate if you do not mention me as a Lyon's hunter, or follower of anything (I am neither).

Thank you.

jgkarob · Post by **jgkarob** » Tue May 24, 2011 11:48 pm

I'm with you Lyon.
I pm'd Ian as I was so scared of the evangelists who use the dropping of the risk-sharing scheme as 'proof' that drugs that change or reboot the immune system don't work.
They weren't there, in the UK at that time. The risk-sharing scheme was brought in to give people access to the MS drugs. Less than 1% of people with RRMS had access at that time (01/02) in the UK and the situation was shameful.

They don't have MS - the most vociferous, but take every opportunity available to rubbish 'Big Pharma'. Without my particular DMD, I'd have stopped walking years ago. I'm actually grateful to whoever developed it and really pissed off with the way that this site has changed and no doubt someone will write that I must be a pharma shill. If only. I could use a couple hundred euros more a month.

No one dares challenge any of the statements made by the most influential voices. No wonder Lyon feels a bit hunted.
I wish I'd got on to the Campath trial in 01, but alas, I didn't qualify. It really is the most effective drug treatment.

raven · Post by **raven** » Tue May 24, 2011 11:49 pm

Shucks,

I was treated with Campath 1H as part of the CAMMS223 clinical trial. You can find all of my posts about my treatment in the Campath forum.

Good luck with your search.

Robin