Negative sputum results without treatment

@windwalker Hi Terri -- I think there is a lot still to be learned. I think there has been knowledge gained but it is very incremental and not entirely conclusive. I think it took a while to come up with a clear definition of an 'exacerbation' part of the decision-making of whether to treat or not. Seems like that was a big deal for clinicians/researchers. There is no doubt that there has been substantial increases in infection rates in parts of the world that are alarming, but no one really knows why. I noticed that some of the data presented was somewhat dated so found it difficult to ascertain what was new. I gather the challenge for epidemiologists is that NTM is not a reportable disease or not reported well where it is. (I brought that up elsewhere)
As for treatment, It was clear that inhaled antibiotics is the next big thing although there was no mention of costs -- which I hear is prohibitive as with all new drugs. No one at the conference seemed concerned so I gather there must be some way to deal with that. I saw a list of 7 ongoing clinical trials for these and a statement that none have been approved (I thought Amikacin was??) I learned that some antibiotics can result in QTc prolongation, something I have to watch out for. There was mention of a drug called Bedaquiline used for TB years ago and recently shown to be effective for NTM as well, with the caveat that it is dispensed from just ONE pharmacy in the US and that it costs $30K for 6 months (learned elsewhere).
There was a lot of information/data presented and sometimes no clear explanation of what it all means to us lay people. I was quite overwhelmed sometimes. It would have been nice to have occasional small breakout groups - will provide that feedback. I just learned the next world conference is in Vienna in July. Would be nice to go that one although twice in a year seems like too much...:-)
Mary

@sayaboleh THANK YOU for the info!! I had no idea what QTc was...Every few days, usually while I’m resting, I will feel a sensation as if my heart is stopping, kind of sinking, with a little bit of pressure, and then a big THUMP, and everything’s fine again...I have been taking Gentamicin as an inhalant for four years now. Hmmm..

@sayaboleh Thank you so much for that recap Mary. Gee, it doesn't sound like they are making much headway with MAC. I appreciate that you took the time and expense to attend that conference. I plan on going to one in the near future. I would LOVE to go to the conference in Vienna!!!!

@brigby Wow! I didn't know you had all of that going on in your sinuses. Good lord!!!

@windwalker. Yes indeed. Vienna is a whole lot better than Grapevine TX I have to say (with apologies to our friends in TX) Unfortunately, my husband believes that my short jaunt to the conference has triggered my current afib. (unlikely) and contributed to my back injury. I forgot to include my imminent root canal to my list of non-MAC woes 🙁 When it rains....

@sayaboleh Awe...I am sorry to hear that you are having such a run of bummers.

@jkiemen I was in the same situation, I was changed to daily big 3 from 3x a week and put on Amikacin inhaled and it worked to get a clear sputum and bronch result.

May I ask how long you were on the big 3 before a clear sputum and did you have a special routine in taking the drugs to minimize their effects?? Thanks.

@pfists Thank you for praying for me. I do feel the mind-body connection plays a very heavy role for me. Saw ID yesterday. The Sensitivity testing is still not back, so more waiting.

Based on several comments in this discussion, I am interested in taking NAC. Thanks! However, I read that NAC can cause hemoptysis. Has anyone had that reaction to taking NAC orally? I was diagnosed with mild bronchiectasis (with a couple small nodules) and MAC after coughing up blood a couple of years ago, while lap swimming. Last month I again coughed up about 2-3 TBS of blood on going to bed. Other than that, I have had no symptoms and don’t take antibiotics. I am 72. I exercise and walk 2-4 miles almost every day and my spirometry/breathing results are normal.