Negative sputum results without treatment
Has anyone had spontaneous sputum conversion without taking the big 3? I was told recently that my latest samples produced no pathogens -- i.e. MAC organisms. That is great news of course -- I had no idea that would happen but found some studies that 40- 60% can spontaneously convert without the benefit of treatment. I was diagnosed about 8 years ago and just assumed I would always have it. I have had no symptoms other than a flare up recently when I caught a cold, hence the sputum samples to figure out what was going on. I was given a long explanation by my pulmonologist which was a little difficult to follow. Would love to hear from others if they know anything about this.
Mary
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@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.
Hi again. I’m also interested in 7 % saline. I haven’t been able to get a prescription for it from my ID doctor yet. I’ll ask again next time and show her the paper AlleycatKate posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/). In the mean time, I found a “pocket neti Himalayan sea salt inhaler” on the web that’s about the size of a chapstick. Has anyone had any experience with it?