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Discontinuing MAC antibiotics

MAC & Bronchiectasis | Last Active: Nov 27, 2023 | Replies (73)

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@sueinmn

If you have done some reading here, you may have seen reference by others to how hard it can be to get good care for MAC & Bronchiectasis. I don't know about you, but I had never heard of either one before my diagnosis, even though I had been around people with lung issues my whole life. Both are considered "rare" conditions, affecting less than 1% of the population, so doctors may go through their whole career seeing very few cases. My pulmonologist had a pretty long history of treating MAC, but I learned he was NOT a team player, and was not open to questions, new or additional treatments, or cooperating with other doctors. He "fired" me when I consulted an ID doc in his clinic who had opinions different to his!

We on Mayo Connect always like to say you need to become your own best advocate to get the best possible care. If you are not getting much info from your team, you may want to ask what can feel like delicate questions:
How much experience do you personally have treating MAC?
How many cases have you treated in the past year? 5 years?
Have you had specific training/workshops in treating MAC?

Another hint would be if they have started you on a daily airway clearance routine, which is a big part of getting & staying healthy. If they don't deal frequently with MAC and Bronchiectasis, you may want to ask their help in finding someone who does.

Are you comfortable asking questions of your care team? Trust me, you are not a wuss - this is a tough treatment to get through.
Sue

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Replies to "If you have done some reading here, you may have seen reference by others to how..."

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