hi jfox–

February 2, 2011 at 5:10 pm

[FONT=”Microsoft Sans Serif”]you can begin by contacting Paula Gozdziak she is the nurse coordinator for doc burt for cidp specifically.
it has nothing to do with your neuro– hopefully he/she will simply be supportive– and if you are lucky and your neuro goes along with the program– he/she may choose to consult with dr. burt by telephone before hand.
i would suggest that you broach the subject with your neuro by providing him/her with some literature on the protocol– language that a neuro can understand. mine, for example, never read what i gave him… i know this because when he argued against it– he referenced the protocol incorrectly.
you can find any and all info you may need on the treatment protocol on my website: [url]www.alicedicroce.com[/url]
as far as what it takes to be a candidate– they say that you have to try and fail to standard therapies… they have been a bit inconsistent with this as i have mentored numerous people that have gone for evaluation and SCT itself… but i wouldn’t worry unnecessarily about this at this juncture.
i really do think that my website has come to be pretty comprehensive and should answer all your questions– the clinical trial link is even on my site– although it doesn’t really contain much info. and… it is now a phase 2 trial, rather than phase 1 when i went through it.
feel free to contact me directly to write or talk more about anything to do with it– i’m always happy to help. sooner is better than later as i return to work on monday!! yay!
best of luck to you and i look forward to hearing from you– and hearing that you are beyond this ugly illness/condition/disease/affliction… 😉