Sheena,

If I were in your shoes I would be going on the med too. It is one of a very few that actually work and it even reverses symptoms. That is a big WOW to me!!


Good luck to you.

gmi

I guess I've been out of the loop lately:eek: What is HiCy? I've seen it out here a few times but didn't pay attention. I thought they were talking about HiCi which is a nice fruity drink:thud::blush::ROTFLMAO::ROTFLMAO::ROTFLMAO:

I really don't know what it is:o

Best of luck to you - I hope it's a miracle drug!

Revimmune.

http://www.accentia.net/science/revimmune.php

Hi Sheena, I'm so glad to hear you have some hope back in your life! I know things have been so hard since the diagnosis. I wish you the best with HiCy!! :hug: Know that we all fully support you 100%. :circlelove: Keep us posted on the process.

YAY Sheena!!
 

Sheena, I'm soooo glad you posted this and let everyone know. Everyone here, so far, has been supportive of me. (btw, did you get my email the other day??)

Anyhow, I'm glad you have your foot in the door - now we need to get the rest of you there.

I am just about 2 months post treatment (2 months since the last dose)... So far is has been a magic bullet for me. I'm still "recovering" - but not dealing with the MS symptoms barely nearly as much. It's amazing. No, I'm not saying I don't have MS and I'm not saying "cured" quite yet (time will tell on that) - but I will say this - I am improved in a way that none of the CRABs, etc. have done for most people. I also believe that I am HEALING. This isn't just about symptom reduction and a slowing of progression...but I really think this is the closest we have to a cure right now and I will stand by that belief for as long as I can!

A few weeks ago I received the neurologist's report from Dr. Kerr from my initial visit at JH. Man, I was in baaaaaaaaaaaaaaaad shape. It was very difficult for me to read how bad it was. :holysheep:

I was saying to someone the other day - "this has been amazing because I'm certain that by Xmas I would have been in a wheelchair and now I'm not even needing my cane!" And her response was: "Christmas??"

- I thought she meant that I was exaggerating the situation, that it wasn't nearly as bad as I was making it to be - so I said, "okay, next summer?" She replied - "NOOOOOOOO, it would've been sooner than Christmas even!" I was kinda shocked because even though I was saying how "bad" I was doing - I don't think I ever acknowledged just how bad it was for me. :( :paperbag:

Sheena - I am sooooo excited for you - and I hope you get in soon.

I need to finish creating my blog (yes, I've started it!!) - and then everyone who wants to know can learn more about this experience.

While I'm not 100% better - I'm at least 100% better than I was before. (Does that make sense?)

~Keri

ps/Oh, and my hair is growing back!!

thanks for the link cheryl. i didn't know what it was either.

why do they call it HiCY?

i'm glad you shared sheena. and i hope it helps for you.
i look forward to hearing about how you are and hope you let us know how you're doing?

best of luck.

The HiCy stands for high dose cyclophosphamide, meaning that it's being used in high dosage over a few days with the intent to quickly eliminate the immune system rather than being used low dose, long term as a suppressing agent.

Cytoxan/cyclophosphamide has been around for over half a century and has had many uses in that time, including use as an immune suppressant against MS in lower dosages.

Despite the fact that most any sensible person wouldn't want to stand in front of ANY steam roller, the difference between "rebooting" and "long term suppression" is a little like the difference between standing in front of a stopped steam roller as opposed to standing in front of a steam roller that has been slowed down but is still rolling :winky:

In both cases a little difference makes for a huge difference in outcome.

At the end of the day it's probably true that the "rebooting" agents themselves are no great miracle, but the discovery of "rebooting" as opposed to "long term suppression" is the exciting difference and eventually, hopefully, a treatment will be discovered which eliminates specifically the factors responsible for MS and it won't be necessary to eliminate the entire immune system.

Bob

Sheena
I hope you get to do HiCy. Sending positive thoughts your way. Keep us posted.

:hug:'s