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Anyone been mistakenly diagnosed with MAC Lung disease but not MAC?
MAC & Bronchiectasis | Last Active: Jul 19 11:19am | Replies (31)Comment receiving replies
Interesting.
Have you had symptoms that made you (or your doctor) think it was MAC?
I'm in a similar situation - wondering if the MAC isolated in sputum and bronchoscopy indicates that, yeah. the bacteria was present, but not that is MAC lung disease. I dont have any symptoms. And same, not choosing the antibiotics at this point, sounds like the treatment worse than the disease.
My CT scan in February was less than a week after I was sick w the flu, coughing up stuff, stayed in bed, - so 'the infection' my doctor pointed out in the CT scan could have been residual effects from being sick. The only way to know is with another CT scan to compare, see if infection is still there, worse or better....
Replies to "Interesting. Have you had symptoms that made you (or your doctor) think it was MAC? I'm..."
Pathology from your lungs is sent to a laboratory. My doctor only trust the laboratory at national Jewish. My bronchoscopy was done in the state of Tennessee but sent to national Jewish each time. It takes 6 to 8 weeks to grow the mycobacteria.
The CAT scan is simply a picture of the lungs that shows the damage
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Similar situation for me: I was diagnosed with BE and MAC 2 years ago. In Dec 2023, after a major hemoptisis event, the I.D. doctor told me I absolutely needed to start the big 3, I tried Azythromycin and Rifampin every day for 10 days, did not tolerate them, so I stopped them and took an appointment in a different hospital with a new pneumologist experienced in MAC infections. He told me my CT scans did not indicate MAC lung disease and that everybody has MAC, Aspergillus and Pseudomonas in their lungs (like I do). He put me on airway clearance with 3% saline and asked me to continue exercising hard with every day cardio for 30 minutes. Which I do. Of course I am a bit nervous that MAC lung disease could develop since I have BE, but I am also hopeful that new treatments other than antibiotics are on the horizon. IRINA-1 sounds like it could be a game changer. My new lung doctor told me the most important line of defense against MAC lung disease is daily cardio, so I do the bike or elliptical religiously. Fingers crossed.