Last CT was in April. Showed improvement but also showed new small area. Pulmonologist wasn't too concerned. Said that can happen (wax & wane) with this disease/bronchiectasis.....I will have video visit with him mid July after repeat labs (but sputum not ordered. ID doctor says she doesn't need it this time). I will ask him (pulmon) about abscessus again then. Wish I'd been involved in the treatment decision. I know they consulted with NJewish md too.....would like to hear from that doctor what she recommended. May have to look into that in the future if I'm not satisfied with answers here. :( 

BUT I feel fine! No side effects, pilates 2 -3 times a week, walk dogs at a pretty fast pace, no cough.....never felt sick. 
All this began with 2 pneumonias......only slight fever and a deep cough,otherwise felt fine. treated with usual antibiotics. Felt fine then coughed up blood which sent me to ER & bronchoscopy. That's when all this mycobacterium was discovered. At first they weren't going to treat at all, then after more sputum tests, etc. decided to treat MAC. I have that too (&bronchiectasis) and I was told MAC's the "dominant" strain and so have been treated for that since January. Last culture negative for MAC but abscessus still there....

Tracer,
Yes, you deserve to be part of the conversation Re: your treatment options. Do ask your pulmonologist again about the abscessus.  I am so glad to read that you feel fine. Please keep us posted on how you are doing before and after your mid July appointment.

@Ksmiles123 Thank you.....I'll keep you posted. Initially was told "the treatment is worse than the disease" and ID doctor said treatment "made her nervous" (PICC line treatment). That m
akes ME nervous! 

@Tracer Hi there, glad you're culture came out negative. So does that mean you were only on antibiotics for 4 months?  That's what I'm freaking out about.  My culture has not come back yet but my doc said if it's MAC, I will be on antibiotics for 18 months. I'm just not sure how my body could tolerate those for so long. It's so nice to have people to chat with about this.  Take care! 

@janney  I will be on antibiotics for 12 months from negative MAC results.

Hi Tracer, I coughed up blood too but other than cough I don't feel bad at all. What antibiotics are you on?

@Janney I feel great too, thankfully. Haven't had another incident coughing up blood, have you? I'm taking clarithromycin, ethambutol & rifampin...you? (along with vit. c, zinc, vit. d, probiotics & omega 3......cupboard looks like a pharmacy! :)

Hi Tracer, I didn't go to the ER after I coughed blood. Waited to get into doctor.  Now I'm waiting on the culture to come back before he prescribes the meds. I wonder if it always has to be three antibiotics.  I'm so worried about some of these antibiotics affecting my kidneys.  It just seems so crazy to take them for so long but I guess they know.  Really glad to hear that your doing well 'cause you've been taking them for over 6 months now.  So nice to hear a positive story!  Thanks for sharing!  Really appreciate it.  janet

@Janney It seems like forever waiting for those sputum results to come back! I hope you don't have any issues with the antibiotics. Let me know which ones you "get". I take the 2 ethambutol & 1 clarithromycin at 8 a.m., vitamins and probiotic at 2pm, 2nd clarithromycin at 8 pm and then the two rifampin at 10 pm and call it a day!! It's not so bad when you get into the swing of it. I have pill box with 4 compartments and 4 alarms on it so I don't forget! My dog now has epilepsy and needs meds about the same times....pill pals!! haha I also have hereditary hemochromatosis so I was worried about my liver but no problems, thankfully. I hope you'll find it's not that big a deal too!! Keep me posted!!Good luck!!
Tracy