Hi Machelp, I also lost weight with MAI, MAC, and now dealing with M. Abscessus colonization. With this round of illness, I went from 122 to 101lbs over the course of six months with loose, large stools three times a day. I've worked with gastroenterology to try to gain weight and to manage all the symptoms of IBS with diarrhea. Their main concern was for anything major in the digestive system so I had an upper endoscopy and colonoscopy to rule that out, also motility testing. Next is to gain weight. The condition requires much more calories and protein to help fight the infection, so I drink protein smoothies daily (OWYN with 32g of protein). I work with a functional medicine doctor and associated dietitian. I tested positive for SIBO (small intestinal bacterial overgrowth) and intestinal dysbiosis (basically an imbalance of yeasts) and have been on a FODMAPs diet which helped a lot for a while (but didn't resolve the GI symptoms) and now on a low carb and completely sugar free diet (followng Wahl's). I started in October 2023, and now, after continuous treatment for both of these GI conditions, I'm finally feeling like my body isn't being assaulted every time I eat. Diarrhea stopped completely. I've gained 5 lbs and don't have as much fatigue or burning sensation in the muscles. Less inflammation all around.

Solving GI issues is complicated for otherwise healthy folks, but for those of us with serious medical conditions and treatments that exacerbate GI issues, it's even more complicated. Working with gastroenterology and functional medicine have been key for me. I highly recommend trying this route in addition to your Pulm and ID docs. Also important to check for osteoporosis. It's just so hard to get better when you're malnourished. My functional medicine doctor is at Cleveland Clinic (she's also an internist and integrative medicine doc) and only have virtual appointments (her appts are covered by insurance though most testing isn't). Wishing you the very best with your treatments and health, Roisin