For anyone with IBC questions, and/or wanting referral suggestions, I highly recommend contacting the folks at IBC Research:
http://www.ibcresearch.org/
If you write to them, a volunteer will contact you personally. They can recommend expert second opinion resources throughout the country, they have a wealth of information on their website, they stay current with the latest progress in IBC, and they participate in the research.
Debbie Laxague