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RedPenguins · 07-08-2008, 07:37 PM

Cherie - as far as I know, Rush Hospital in Chicago is starting HiCy (or may have already - but don't quote me - as I haven't spoken to anyone - just "heard" this info).

I do believe they have other studies planned - the thing is - it isn't the type of treatment that can easily be done double-blind and placebo controlled. I don't know how they get around that....but then again, as Cheryl calls herself, I'm also just a lab-rat, not the scientist.

I'm not in a trial. As far as I know, rght now there isn't a trial running...they are doing the treatment as "off-label" and insurance companies are paying for it. Of course, I'm sure they will be using all data they get from those of us going through it now.

Also - I know of 4 other people who have gone thru this (well 3 who have, one who goes in tomorrow) other than myself who has had this done since June 30th alone. I have met 3 of those people and spoken via phone to the third. One of them is from Alaska! We are traveling far and wide at this point, but this treatment, the way it is now, isn't accessible to many. It is quite expensive - not the actual medical part as insurance is covering it (I have also been told Medicare in the States is covering it, too)....but living in a foreign city for nearly a month is costly. You also need to have someone stay with you the entire time. So if you or your caregiver works, that is also a loss of income. I am blessed to have people in my life that have been okay to come with me - but at first, I struggled with coordinating all of this! Also I'm blessed that I have a great friend (also one of my caregivers) who is loaning me $ to fund my little research project here.

She is my lifesaver. Of course, if HiCy doesn't work, then she is more like my sour gummy bear or something!

So, back to the point - I believe the intent is to have many hospitals offering this treatment.

~Keri