@flib That's so scary! Do you have trouble making yourself eat? Are you on treatment for the MAC?
I was thought to have MAC for about 3 years (fibronodular pattern with bronchiectasis on CT scan) but not treated initially because I just had a dry cough. I was seeing my pulmonologist every 6 months when I started to lose weight, slowly, a couple of pounds over 6 months (5’ 4”, started at 120). He told me I should work to gain weight, which I did, but I was down a few more pounds when I saw him next. Same talk about how important it is to keep your weight up. Then I had hemoptysis a month later and had developed a small cavity on CT scan. Bronchoscopy, positive cultures, and the big 3 followed in short order. By that time I had developed a serious anorexia and even an aversion to food. It was really hard to make myself eat. Fortunately, I only had nausea, cramping, and diarrhea for a day or 2 when I started the meds. Imodium helped, and I took them all on an empty stomach at bedtime. It took about a month of treating food like medicine before I began to be able to eat more normally and to stabilize my weight. I’m now regaining lost weight. My low was 105, about a month into treatment. I’m now at 6 month on meds, and my weight is back up to 113.
So, it seems to me the disease itself can cause weight loss, although clearly the meds can make some people lose weight as well. For me, the meds helped me turn it around. I focused on making sure I ate lots of protein, drank a smoothie made with kefir every day, and I take a multivitamin. I worked on getting lots of sleep and would nap very day when I needed it, and I think that may have helped. Also lucky to be retired and able to baby myself!
Please keep us posted!