Hi all,

I just found this site after a late night googling rabbit hole. I'll try not be too long-winded.

I was diagnosed last year, after a bout of pneumonia, which led to an incidental finding on an xray and then ct scan. At first my Respirologist mentioned mild bronchiectasis (which my new NTM specialist says she doesn't even see), but it also looked like there was infection, which was only diagnosed through a biopsy in August. The NTM I have is m. xenopi, which I have found some research on, but also sounds like a bad one to have.

I have no symptoms (other than feeling tired, which I have felt my whole life). Actually, since all this happened, I have been less sick, and felt better overall than ever... the first thing respirologist did was take me off steroid puffers, and I have surprisingly been breathing great for 7 months, and just tested negative on the methacoline challenge (apparently no asthma).

My issue now is the idea of starting treatment. I initially didn't want to, since I wasn't sick and I imagine the experience on antibiotics for a year and a half will make me sick, but the new specialist strongly suggests starting, as I am young, and this can just keep growing. I will note that I have two cavitary areas (I think they're maybe small, but everything I've read about this scares the crap out of me). For now we have agreed to rescan in the next 1-3 months (last scan was 6 months ago), to have more info and updated imaging and if it has gotten worse, to start meds.

I am also frustrated and overwhelmed as we do not know why I ended up with ntm, but the current theory is immune dysfunction, as evidenced by history of asthma, eczema and food allergies. The specialist also wonders if I have some genetic component linked to CF (which I also thought of after doing more reading), but that it isn't worth testing for and it probably won't show up.

I already started with lifestyle changes, including avoiding all steam (which I used to engage with regularly), trying to boil/treat most of my drinking water, and tried using aerobika and airway clearance techniques (but I never bring up anything).

At this point I am feeling hopeless, even though the Dr's tell me I'm young and will tolerate it fine, and will likely be able to get rid of the infection.

Curious to hear from anyone about their experience, especially anything positive/hopeful, and specifically from anyone on the younger side who treated without any symptoms.

Thanks so much for listening.