@cindyrue I am so sorry for you. I think the problem with doctors isn’t that they don’t care, but they are frustrated by this disease. Clearly the meds did not seem to help you but only made you more miserable. I guess then a doctor feels that the “cure is worse than the disease” so they decide to monitor it every six months. Maybe you could ask them about sending you out to National Jewish Health or a particular Mayo near you. Having had shingles doesn’t help either especially if you have post shingles pain (without the rash). Eating a nutritious diet is very important with MAC. I’m not an exercise kind of gal. Vacuuming is good enough for me. I am also so very sorry about your child. I can’t even imagine that pain. Praying for you. Some of us are sicker than others, but we are all in this together. (irene5)