Jim:
I am sure you guys will pull through. Our thoughts and best wishes are with you. I will pass along any suggestions that comes to my mind as they occur, but for starters..
I have not yet read through the whole thread, so this may have already been suggested, but in case not....
1) Try Google answers. http://answers.google.com/answers/ It is a bit low on medical questions but by putting up some decent money you may attract some specialists attention from anywhere in the world. You can also browse the questions that are already answered to see if it is applicable.
2) WebMD is another resource. You probably searched there.
3) I have an experience with another situation but dissimilar to your wife's situation but the method might work. This is a bit of a hit and miss, so be prepared with some persistence. I will just describe what I did and use it as applicable..
I was reading a forum that was dealing with a situation my friend was ailing with. Someone there posted an article about a research program at Yale for that particular disease. With absolutely zero expectations, I shot off an email to the professor who is conducting the research. Next day, I got an email from his assistant. We got to talk,got the friend involved and talked further. The big benefit was, it took a while to figure out if he is the right candidate but it gave valueable free time with the professsor by email so we could get a whole lot of things clarified. This was all in the first week of getting in touch with them. The professor felt that he is not quite suitable for his study but referred him to another colleague at Yale. After 4 months, he actually participated in the study and got some extremely useful medical benefit for himself as well. But, for me, the amazing thing is how it all started with very low expectations and it took my friend in a few unplanned and unexpected directions but for his good.
I lucked into it by reading an article in a medical forum. But you can start off a more methodical way by going to yahoo's Clinical Trials page. The way I got to it is by adding that content in my.yahoo.com. Let me know if you have difficulty finding it, I will help further. There you can search for clinical trials for very many conditions. I suggest you find something that is close and try to get in touch with them. Just by communicating with them will generate further ideas, even if that particular one is not right on target. I am suggesting this route since the doctors have indicated to contact university doctors. This gets you even more in to the research area but my strategy here is that it will somehow lead you to the right person.
If anything else comes to my mind, I will keep you posted.
All the best,
Chandra