Thank you for answering me, Sophie.

November 15, 2009 at 11:31 pm

I know your mind now is concentrating on getting Alice better.

I do not wish to intrude on your personal care of a great girl,
such as Alice. And my utmost wish is that she no longer will
have to know what CIDP is–ever–and that it is totally gone
from her body.

But sweet Alice was very lucky, by having some VERY caring
parents, that paid the $100,000.00 cashier’s check to
Northwestern, before they would do anything on Alice.

No, Northwestern is NOT in contact with me.
For them to say it is patient confidentiality is a bit of bs.
Once I said to them there was no way possible for me to
come up with the $100,000.00, END OF CONVERSATION…
I am supposed to live on a government check of $634.00 per month.
That sure won’t get me far with Northwestern.

Since this is “research”, there were 11 lucky and/or wealthy people
that were able to go through this program. After reading the MANY
posts by people here in this forum, how many here would be able
to afford this out of their pocket, since insurance will not
cover “experimental procedures”, as you found out with Alice.

Dr. Burt has to find SOME time to write up his research.
If other doctors see how well it has done, then it will catch on.
Yes, I know of the 2 that it didn’t work on, with the excuse that
those two people had advanced CIDP.

But it is like we, here at the forum, are the onlu ones knowing about
this procedure. All neuros can do right now, is google the program,
and see that it is ongoing….no written documents on this.

So, you see why I tried to get you two to ask him for research
results…and soon.

I am sorry if I am sounding pushy…but my clock is ticking.
I wish I was in Alice’s place.

All my best for a good and quick recovery for Alice,