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At a loss… nocardia AND MAC?!!
MAC & Bronchiectasis | Last Active: Dec 1, 2023 | Replies (12)Comment receiving replies
I’m on the big 3, the Azithromycin, rifampin and Ethanbutol. My pulmonologist, who initially wooed me off my feel, has basically pawned me off on the Infectious disease doc. Idk if it’s sense I don’t have breathing problems yet, even my CT scans are clear and perfect. Which is amazing considering how much crap I cough up daily! I personally dont feel like I have stellar doctors, but the treatment I’m on is the standard for these. I find it scary to have both of these at once. I guess maybe I’m the only one? I guess if she isn’t terribly concerned then I shouldn’t be? I don’t know but it’s sad when you have all these specialists and you have to get most of your answers and help from a Facebook group or support group online.
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I'm rereading your posts, and I think what brought you to this point was a "prefect storm" of adverse events - soil/compost exposure, Covid that weakened your lungs, and the nasty opportunists that jumped in!
Given your young age and lack of apparent damage (yet) have you considered seeking out one of the centers of excellence for treating lungs? I wish I had known at 48, instead of 68, what was happening to my lungs - I may have avoided some of the stuff I live with now.
Depending on your location, Mayo, University of Texas at Tyler, Cleveland Clinic...there are some others...I don't think NJH at this point as their focus is bronchiectasis.
I'm not sure whether nocardia will respond to the Big 3 - it will take someone very well versed in all lung issues to determine that. I do know "wait and watch" is less of an option that for MAC.
Sue