Laura, It’s good to know I’m not alone and unique in my symptoms. It’s been harder for me to accept the diagnosis because of some of the differences. So your husband went to NIH for a validation of the correctness treatment rather than to participate in a research trial?
Ladybug, Thanks for the info on the steriods. I feel both treatments have risky side effects – antibiotic and corticosteriod. I want to make sure I’m getting the correct treatment for me. Side effects are less of an issue to me now after 6 mos on antibiotics that can make me go blind, destroy my liver and kidneys, and compromise my immune system – not to mention make me feel pretty awful. I just want to have the best hope of getting well no matter what that is and I will have to judge risk versus benefit but I need to find out if there is a definitive way to determine the difference from an infection versus an allergic reaction if there is one. I actually was a healthy and very active person with no health issues before I came down with this. I know for many on this list there has been very little time without health issues from the lungs for most of their lives. My heart goes out to you.
Unfortunately my doctor’s appt. has been rescheduled to the middle of July due to a scheduling conflict. I have everything printed out and I will also print out pertinent info from the web address you included in your post. I won’t forget to update everyone once I’ve talked to my doctor. Like I said, my case is not a typical one of life long lung problems and feeling ill and fatigued all the time with shortness of breath, culminating years later in a diagnosis of MAC. I’m hoping I may still be the exception. I don’t want to have an illness that can’t be adequately treated and that is subject to constant relapse and continued worsening progression with only a very few achieving what they call “remission”. It’s very upsetting to me as I’m sure it is to everyone else who is dealing with it. -Chris