Sputum Positive latest bronchoscopy neg
I had bronchoscopy done 2024 found MAC . Going 2 Mt Sanai thought 2 start treatment but still waiting. Last 6 Sputum samples Positive (+4) for MAC last Bronchoscopy done at Mt Sanai neg (no results are posted tho but I’m told still in incubation period (2weeks so far) showing negative. But everything else outside of this facility shows positive. My breathing is worse & last lung CT scan shows scarring. Oh. Every CT scan since trouble began in 2021 show likely inflammatory atypically mycobacteria infection. Why am I not being treated yet. Is all this normal to have positive & negative results like this. I’m growing very scared I know there’s a death sentence when not treated it’s been there for years now
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Maybe it is premature to conclude the bronchoscopy is negative? It can take as much as 8 weeks for conclusive test results. Have you spoken to the doctor who performed the exam to find out their opinion at this point?
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1 ReactionI had altogether 3 Bronchoscopies. First one found the MAC 2024, this year had another 2, 4/2025 & 10/2025. Both done by same Dr both negative cultures BUT All sputum samples (I TOOK THEM to different labs) all came back positive for MAC current sample is now a +4 whereas the ones prior were +1.
@kellykvent It is possible that the bronchoscopy is not reaching the exact place where your NTM is hiding, or that he is using a lab that is not familiar with the handling of NTM cultures.
When you say you took them to different labs, how many specimens did you hand them? My doc requires 3 samples, taken one day apart. All are then tested at the same time.
Are you symptomatic for MAC? What do your CT scans look like? If MAC is +4 the infectious areas should show up as nodules, cavities, or "ground glass opacities"
I can’t thank u enough 4 taking this time w/me every single scan since 2021 when my breathing became worse and before bronchoscopy found MAC state “ likely inflammatory atypically mycobacteria infection” every scan and Ground Glass opacities nodules. Getting worse. I went back to my original Dr who found the MAC and he’s helping me find a different infectious disease Dr. He’s actually shocked that I’m still not being treated by these drs. He’s Also requesting my recent bronchoscopy results since I’m not getting them (I’ve been requesting them especially the AFB test that’s done automatically) nothing is being shared with me
@kellykvent Why isn't the original doctor treating you? Many pulmonologists handle antibiotic therapy for MAC, I'm curiousmwhy yours think you need an ID doc to do it.
@sueinmn I was diagnosed with MAC after a bronchoscopy tested positive. Then my Pulmonologist referred me to ID doctor for treatment on Dec of 2024. The ID doc did not want to prescribe the Big 3 for me and delayed prescribing until I became very adamant to start treatment. These doctors are all at Mayo in AZ. I have been on Big 3 antibiotics for 6 months and doing much better but have cultures of sputum still showing abnormal. Even at Mayo there seems to be a disconnect on which department is supposed to start treatment for Mac. When I grew a backbone and demanded treatment 7 months after the lab diagnosed MAC the ID doc said that she hears this complaint all the time about delayed and stalled treatment start. Very frustrating for the patient .
Kelly, I feel for your situation. I want to point something out in case it's helpful, though you may well know it already. It is sort of boilerplate language for radiologists to say "likely MAC infection" b/c that is a good explanation, but not the only one, for ground glass opacities, mucous plugs, etc one sees. But those same features can appear in the CT of someone with bronchiectasis but not MAC. The point is that a CT scan can't diagnose MAC per se -- only a bronchoscopy or sputum sample can do that. Maybe @sueinmn can weigh in, iin case I'm putting it poorly?
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2 ReactionsMy sputum samples are all positive every time. Like mentioned, they started out as +1 but 4 months later are now +4. Still not being treated. I’m getting worse, w/FATIGUE, night sweats, weight lose.