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Anyone been mistakenly diagnosed with MAC Lung disease but not MAC?
I was diagnosed with MAC Lung disease 4 years ago due to findings on CT Scan and sputum cultures. However, recently hospitalized with pneumonia and a different Pulmonolgist did thorough research on my case and believes that I was misdiagnosed and don't have MAC. Just wondering if anyone else has had this to happen? Luckily, I chose not to get the extensive antibiotics treatment because I felt the treatment was worse than the disease. Would appreciate knowing if others have experienced this.
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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....
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.
Typically the best way to diagnose MAC is through a bronchoscopy. The ct scans only show if any damage yet. I grew a 10 cm cavity in my upper left lung within 30 days.
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1 ReactionIf you have repeated sputum cultures and you continue to grow MAC, most bronchiectasis specialists would consider that to be an infection. Then, it is up to you to decide whether or not you want to go on treatment. It would be based on if you have cavities, your symptoms, and progression of your CT scan.
Please know that there is a clinical trial for two antibiotics versus three. It’s been ongoing for years, has close to 450 people enrolled and they are looking for another 20 or so participants to complete the trial.
Best,
Linda Esposito