Jacobus - thanks for the reply! I'm glad you had some success with it. Were your doctors concerned at all about it effecting your liver? I have read some things that because it is processed through the liver, it should be used with caution, but my dr. just agreed that we would treat it like any other strong med that is processed through the liver and monitor me while I start it. The past few weeks have been the same for me -- only at night...and I can lie down during the day or whatever and it doesn't happen. It is so frustrating. My dr also started me on a beta blocker last week because he has had some success in it helping hemoptysis in other patients, but I haven't heard much about it outside his office, and so far it hasn't made a drastic difference, although the bleeds DO seem to be slightly less. I am not sure if it is just because I am so aware, and propping myself up, and trying not to cough too hard at night.....
I get frustrated with how they always want to treat it with antibiotics. I do NOT think this is primarily an infection problem and there are plenty of people's testimonies who prove that. I've been having hemoptysis like this since I was a teenager and much healthier, and it doesn't correlate in any real way with an acute infection at all. I know that for some people that is the case but I definitely think there are a lot of other things at work here.
Do you do anything else? Did you ever have to get a BAE?
I bought a tincture/liquid form of it that requires drops in liquid because I thought it might be absorbed better, and it was an organic version which I liked. I am going to start it once i finish this course of minocylcine and cipro that I am on (since they are metabolized through the liver too), so we'll see.
Thanks for responding!