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I just talked with my pulmonologist and he does not recommend nebulizing with hypertonic saline because he says it dries out the lungs and the practice has fallen out of favor. But he isn't against my trying it, just doesn't endorse it. I'll have a bronchoscopy in 2 or 3 weeks to see if the gunk in my lungs needs culturing to produce the bacteria or if they're detectable immediately. The latter, he says, indicates worsening infection. If that's the case, I guess I'll have to chose some treatment. Some people here seem to have begun treatment before they had symptoms; I've been told as long as I'm not coughing up blood, losing weight, having night sweats, feeling crappy, then I'm not sick enough to treat. So frustrating; this disease affects post-menopausal women primarily. Perhaps one day the medical establishment will take it more seriously.
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Hi, I was being watched for 6 years before I started treatment. I had coughed up blood twice in that time early on. They still waited as I had no night sweats, wasn’t losing weight but did cough a bit, especially when reclined. My samples were always positive for MAC. My CT scans were the reason they started treatment as they could see it spreading. I was very reluctant to start treatment but at the same time I wondered if it would be better to treat immediately instead of waiting for the spread. Perhaps 🤔 we might not have so many relapses if caught earlier but in saying that, I’m not a doctor just my thoughts. I find it interesting your pulmonologist doesn’t believe in saline nebulising anymore!
Other people swear by it. Before starting meds 2 months ago I could easily bring sputum up for testing, now I never do. I’m not wanting bronchoscopies to get samples. At first I was on ethambutol with 2 others, the coughing stopped but we had to change it to Clofizamine and now I’m coughing more but without sputum. It’s frustrating to know what’s going on. Everyone talks about their pulmanologist, are these separate to the treatment you receive from the hospital or in your country do they treat you?