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← Return to Life while being treated
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Hello, I also have BE and MAC, I found out August 2023 with CT and incidental findings. I’m still asymptomatic
I’m pretty healthy , I exercise, hike, play pickleball etc.
I go to NJH , we did a watch a wait with saline 7% and. ACT. We repeated a CT of the chest 6 months later with showed slight worsening. TheID doctor recommended to treat with antibiotics. It was a hard decision for me but I went for it. I started the Big 3 November 2024.
I have been doing really well so far. I take probiotics daily away from the meds. I take the antibiotics all at the same time with a cracker or two in the morning. Then I eat a meal about 2 hours later. Occasionally I get a short mild stomach cramp about three hours after the ingestion of the meds. But this does not affect my life.
I travel within the US with an RV and twice a year I travel internationally. The antibiotics have not affect my travel. Just need to plan ahead yo have prescriptions.
I still work out and really I feel stronger since I have been on the antibiotics. Also my sputum seems to be less. It’s definitely a long journey and I’m ready for all the up and downs of it.
I have just received my first negative sputum. It’s a small victory but it felt soo good!
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Wow, that's nice to hear! The more I read of personal experiences, the more confusing the treatment decision seems to me. I've had several different pulmonologists (due to them moving on, retiring, or to my moving away from MN to CO), all of whom have discouraged treatment, until recently. I can't think of any one of them who would have supported treatment when I was asymptomatic. I've asked my current doc why keep waiting until I'm coughing up blood or having night sweats, losing weight, etc. since the damage being done is permanent. He always says I'm "doing great" and the treatment is highly toxic , and is therefore ill-advised. Now, with a CT scan indicating worsening (not the first time), he's suggesting bronchoscopy to see if the bacteria show up without culturing. I.e., if it's evident without culturing, that indicates increasing infection. My annual PFTs always say "low normal" for my age, my blood O2 is always %94 or so (and I live at 5,000ft.) I am so encouraged by stories like yours and others' who do well with treatment, and so frightened by the experiences of others who suffer. If it's definitely worse, I'll probably opt for treatment, but will first get second opinion.