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DiscussionNew Diagnosis of MAC/MAI & I'm scared
MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)Comment receiving replies
Replies to "Hi...I’ve been recently diagnosed with MAC lung disease from a bronchoscopy. I was prescribed ethambutol and..."
@laura34 Hi Laura. I was diagnosed in 2005 with mac and I declined the 3 drug regimen. I was put on a two week run of azithromycin and it knocked the infection down. I don't know if it went away because I was never tested again for it until I went to the Mayo Clinic in 2013. (That was negligent of my former pulmonologist, and I didn't know that I could have requested regular sputem testing) In 2013 I was put on two antibiotics. If you click on my picture here you can read about my treatment plan. My point is, is that a patient's treatment plan needs to be individualized. It is not a one treatment fits all. MAC disease in itself it difficult to treat effectively because it is constantly morphing and it's specie list is growing. Kind of like chasing the wind. Now, if you add to that a physician that is unfamiliar with treating this....and believe me, there are many that are (unfamiliar). It would really be helpful for you to go to the Discussion Board located on our group's main page. There is a list of topics there. It would serve you well to learn all that you can about mac. That way you will know what questions to ask your doctors and also you will be able to distinguish whether or not you are getting proper care. I too, want to extend my gratitude to you for your service. I cannot even imagine being in the throes of that middle east warfare.
@laura34 I wanted to add that I used to complain that my lungs burned all of time. My dr said there is no nerve endings in the lungs, therefore it wasn't them that was burning. The burning sensation turned out to be acid reflux. It was my esophagus and maybe part of my bronchial tree that burned from acid erosion. Once I treated that and made lifestyle changes; it went away. You having been exposed to burn pits may very well have damage from that. That was a great tip from Terri aka @tdrell about NJH having a special dept for service people.
Hi Laura, You have a number of questions that only your doc can answer. First, what is his/her experience treating MAC and/or bronchiectasis? Second, was sensitivity testing done on you specimin to determine which antibiotics to use? Third, why did the doctor omit rifampin from the regime? (May be due to other health concerns you have) Fourth, why the every day dosage regime as opposed to the 3 times weekly protocol?
Some questions for you: When were you diagnosed with bronch, and how was the diagnosis made? What symptoms were you experiencing that led to the bronchoscopy? How long was the interval from the bronchoscopy to the beginning of treatment? What other treatments have been prescribed for the bronchiectasis (nebs, inhalers, Acapella or other therapies to loosen mucus...)?