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A board to discuss Revimmune as a potential therapy for multiple sclerosis


Okay, don't mean to "yell" - but I can barely breathe.

I have my official appointments and I can't believe for how soon they are!! OMG! I'm going. It's real. I need to get my tickets and hotel set up ASAP - I'm not going to post my dates here - because I just got a bad vibe on here the other day....but if you email me and ask - I will tell you!!!!! ...
Read more : I'M GOING - PACKING MY BAGS - It's SOON! | Views : 2447 | Replies : 10

Medicare covers the Revimmune (HiCy) Treatment

I found out today from the JH Coordinator in charge of getting the insurance approval that Medicare is covering my In hospital stay and the IPOP visits for the Revimmune (HiCy) treatment. Now Medicare only covers 80% of the total treatment which is standard. Make sure if you are going to use Medicare that you have a good Medigap Insurance Plan to cover the other 20%. I am using BCBS (Cplus) Medigap Insurance Plan. No ...
Read more : Medicare covers the Revimmune (HiCy) Treatment | Views : 4428 | Replies : 15

Waiting for an appointment...

Well, JH has had my records since the first week of May. I hounded Carrie for quite a bit (phone calls and emails)...then she finally told me to contact Dr. Hammond directly. I spoke with him on Thursday(May 15), and he told me that I was a good candidate...but that right now there was a wait to get that initial appointment. I was VERY excited to hear that I was a good candidate, but totally ...
Read more : Waiting for an appointment... | Views : 9037 | Replies : 56

HDC Research and results thread

I have been trying to get a handle on the revimmune idea. I have had MS as well as RA now for 17 years and after trying many different approaches, I continue to deteriorate. I am already probably a EDSS 6: I use a cane all the time now and am ready to try something more drastic than Copaxone and methotrexate and periodic methylprednisolone and antibiotics (not an approved therapy but interestingly copaxone is ...
Read more : HDC Research and results thread | Views : 4980 | Replies : 23

I'll be updating the blog properly later but....WOO HOO!

Great trip to HIPOP today.

Mel's counts yesterday were - WBC 250, Neutrophils 0.

Today, after a v.achy night due to the growth hormone, this is so awesome, they are - WBC 5300 - Neuts - 5100 !!

HIPOP just left us a voicemail, stop all the drugs!

Good eh?

Proper update later at
Read more : I'll be updating the blog properly later but....WOO HOO! | Views : 2290 | Replies : 3

Attn: HiCy patients - want a blog?

Hi everyone, Chenell here again. Maybe I need to break down and get my own account already. ;)

If you are going through the HiCy treatment, please contact me if you want to document your experiences on the internet. I am setting up free blogs as subdomains on Chris' site for HiCyers.

Such as Jamie and Mel @

Please email ...
Read more : Attn: HiCy patients - want a blog? | Views : 2919 | Replies : 4


first of all i should say sorry for not writting sooner
it's been an off and on nightmare since coming back

my major MS issue is pain, not rare but not too common either
my neck, hands, arms, shoulders and ribs are agony i haven't been able to walk because of pain, i've had very little to no relief in 3 years

so my first visit was to the ms clinic in kingston
saw the ...
Read more : canadians | Views : 2658 | Replies : 10

Stony Brook (NY) results in an easy to read format.....

This has possibly been posted before but when I look for it I can only find outdated links etc, so forgive me if I am being redundant:

This is what JH sent to us:


High-Dose Cyclophosphamide for Moderate
to Severe Refractory Multiple Sclerosis

Douglas E. Gladstone, MD; Kenneth W. Zamkoff, MD; Lauren Krupp, MD; Robert Peyster, MD; Patrick Sibony, MD;
Christopher Christodoulou, PhD; Emily Locher, RN; Patricia K. Coyle, MD

Background: High-dose cyclophosphamide is ...
Read more : Stony Brook (NY) results in an easy to read format..... | Views : 2073 | Replies : 1

JH has my records!

Hi everyone,

I'd like to thank those of you who have shared their experience of the HiCy treatment.

Carrie at JH received my records on Friday. I'm very "excited" - okay, it feels weird to think that I "want" to have chemotherapy and that I'm excited about doing this.

Some people in my life, including my neuro, thinks this is a drastic move. Of course, my neuro makes no sense - in one breath he ...
Read more : JH has my records! | Views : 4691 | Replies : 21

rebooting at JHH

As of May 6,2008 I will be at JHH for the HiCy treatment for MS.
My intention is to try and keep those interested informed of the procedure and my experience with the procedure.


At 7:15 am I went to JHH The email that I received prior to leaving Chicago was detailed and gave step by step instructions. First I signed in and was issued an orange card which one sweeps at specific stations. ...
Read more : rebooting at JHH | Views : 15096 | Replies : 86


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