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kwi (@kwi)

What is the role of an ID doctor?

MAC & Bronchiectasis | Last Active: Sep 14 7:49pm | Replies (12)

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@lupine

kwi: Welcome to MAC and bronchiectasis 🙂 I was first diagnosed with it 10 years ago and the first pulmonologist who saw me didn't recommend any treatment. Evidently she'd had a patient who got C-Diff from all the antibiotics and she didn't think the treatment was worth it. I saw another Pulmo (my current doc) who started me on ethambutol, rifampin and azithromycin. I took them as directed for 15 months. The third bronchoscopy I had in 2014 showed resolution of the MAC. Great!

But after having Covid twice (even though fully vaxxed) the culture from my routine bronchoscopy in June showed that – just like Mack the Knife – MAC is back again. Because I have kidney disease, which all those antibiotics could have caused or at least exacerbated, I am refusing another round of antibiotics, including the (very expensive) inhaled Arikayce. I feel like I could go through another 12-15 months of antibiotics and the MAC will eventually recur anyway. And further damage my kidneys.

Next week I will see an Infectious Disease doctor also trained in Nephrology and am hoping he will suggest a treatment plan without antibiotics. I have a nebulizer but no nebs at present and am interested in the saline treatment mentioned here along with Aerobika. I don't cough much and it is never productive. Things like Mucinex have never worked for me because of the bronchiectasis that is like a nest holding onto mucus. So I'm hopeful that the ID and the Pulmo will agree on something I can live with.

Good luck to you. This is a good space to get information and support!

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Replies to "kwi: Welcome to MAC and bronchiectasis :) I was first diagnosed with it 10 years ago..."

I hope that the ID doc will come up with a plan that works with your CKD!
Sue