[Kelly]

Hey Hopeful - thank you. I can only take credit for finding this amazing forum. We have a team of advocates for my sister which is helpful but not when none of us actually know anything about this disease. We never heard of it before she was diagnosed.

Okay, we are hoping she gets transferred to Dana Farber and I know she talked to the doc y'day who was in communication with the AA expert from Dana Farber That being said, she said today that they know the dose of cyclo was too high for her. So, it was probably like you but you found out quicker than she did.. when she started getting weaker figured it was just par for the course and waited to see a doctor. We all thought that was normal - the low before the high. So, now we know it's not and if there were a next time, to go right away to hospital.

She is feeling better after being off the cyclo but knows she will have to go back on just with a different dose and will push to keep her in hospital for at least the beginning of that and ensure they check her 12 hour trough levels frequently and that her body can take it. Thank you for that information as well as the article which is super helpful!!

Really really thank you. You've been amazing. I want to fly you up here to be her advocate. You've been through it so you know the questions to ask, etc. We are all so grateful.