Donate Now
Donate Now

Reply To: What to do?

Home Forums NTM Support Forum What to do? Reply To: What to do?

#4924
BetteBette
Member

Certainly the meds for MAC are “hard core”, but I’ve learned from sad experience that these NTM bugs can destroy one’s lungs. One really must have an expert monitor one when one has MAC. They say the CT scan is the “gold standard” for proper NTM evaluation. Chest X-rays don’t reveal as much. The third pulmonologist I saw took me off the meds, saying “no one can tolerate them”. Well, a year later my condition worsened and, after sending a sputum specimen to National Jewish Medical and Research Center, I was diagnosed with M. Abscessus, a rapidly growing bug. I think your gut feeling is the one to listen to. Indeed, if it’s at all possible, you might considering going to Tyler Medical Center in Tyler Texas, which also treats MAC infections. Or, there’s NIH in Maryland. I say this because you’re obviously worried and you also are having some definite symptoms. From my own experience, as well as stories I’ve heard from others, the “wait and see” approach definitely has its dangers!