Yesterday I found out that my insurance denied me for the treatment Because they considered it investigational for this. But my doctor has called for another appeal yesterday. This just is not fair!! I am fighting small attacks it seems everyday. Just waiting for the next big one to come again. So dissapointed and sad over this.. Annamarie

Don't give up, Annamarie! You may want to have your doctor contact Dr. Kirk Druey at NIH, _kdruey@niaid.nih.gov_, phone 301-435-8875, for advice and support. More than that, it would benefit you -- and your case for getting IVIG -- for your doctor to make arrangements for you to be examined by Dr. Druey and colleagues at NIH, to confirm your diagnosis and discuss treatment options.

I am on my way to the doctor I am having another attack it is getting worse. He is doing another appeal today and I have done a members appeal. Sending all of Dr Griepp info. Our local hospital is now involved witth an appeal too. Thanks I will let you know how things go. Annamarie

Annamarie I just read your profile and I swear that could have been me writing that! Every month on IVIG I get a little bit better and it's been just over a year. (my feet are a size 6 again instead of the 8 "extra wide" they had been, for the first time in years!) It blows my mind to read about what you went through with the various doctors and inconclusive lab tests and echocardiograms and cardiac catheterization and fluid in the lungs, not being able to walk. It sounds exactly like my story. Prior to seeing Dr. Greipp, I think I sort of started to believe what so many of the doctors seemed to think - that I was doing something to cause my own illness. Like Munchausens!?? How long will your appeal take? Good luck to you. Keep us posted. Carol Thorn

Dear Carol: It's really great to hear that IVIG has been working for you also! It is very important that we help all those like Annamarie who are having trouble getting their doctors to administer IVIG, or getting their medical insurance plan (or Medicare or other government-sponsored health plan) to cover the expense of IVIG infusions. *You can help* as others have done by asking your main doctor to write a formal "To Whom It May Concern" letter on his/her official stationery explaining your medical history before and after going on IVIG. (You need not be identified by name, if you don't want to.) And then he/she can scan or PDF that letter and send it to you, so that you may forward it to me at _aporzeca@american.edu_ That way, I will add your doctor's letter to all the others I've been collecting and making available to RareShare patients who need such testimonials in order to make their case. If you and/or your doctor need examples of such testimonials, write to me and I'll send them to you. And whenever you can update your profile page, or start a new Discussion Forum topic on your case, that would be great, also. *We must spread the good news however we can!*

Arturo Yes - I would be very happy to add myself to your collection of testimonials. And I want to thank you for what you've done with this web site. It has been the greatest gift - when I left Dr. Greipp's office - I walked out with a diagnosis and a prescription that saved my life and your name with a web address that saved my mind! I'll be back in touch with the letter. Carole Thorn