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← Return to Discontinuing MAC antibiotics
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Sue, thank you and WOW! I made a huge assumption (and mistake?) that the ID Doc I was being referred to by the Pulmonologist was a specialist in MAC. I never even asked if he was! Also - no- there has been no discussion of a daily airway clearance routine or any other treatment beyond these three antibiotics. Again, if I don't know to ask, information has not been offered.
I did call today and said I needed to talk about other options - hope to talk to a human being at some point. In the meantime, I have taken myself off this approach. I expect I will feel much better in 24 hours. I have a lot to learn here! Thank you for helping to educate me. Pat
Replies to "Sue, thank you and WOW! I made a huge assumption (and mistake?) that the ID Doc..."
Sadly, since MAC is an orphan disease, very few community docs have much knowledge or expertise in treating it. You're best off going to a COE (center of excellence), where MAC is their bread and butter. National Jewish Health and UT Tyler are two of the best centers in the US
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Another question - did they explain that you need to be conscious of changes in vision or hearing? Was you baseline hearing tested before you started?
Doing so would indicate some level of familiarity with this regimen.
Sue