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MAC Diagnosis and Medication side effects

MAC & Bronchiectasis | Last Active: May 5 6:11pm | Replies (42)

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@happyhealthyme

You are saying something that is very interesting to me -- I do have nodules. I had no idea that nodules had anything to do with MAC. About meds, I'm concerned about hearing loss, since I've already lost so much of my hearing. Should I be seeing a pulmonologist and infectious disease doctor simultaneously? Please, what are ACTs? I'm so new to this and I'm terrified.

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Replies to "You are saying something that is very interesting to me -- I do have nodules. I..."

First the pulmonologist, then the ID doc if 3x per week doesn't do the job. As for hearing loss, 18 months of antibiotics, first 3x per week, then 6 months daily, had very little effect on my already moderate hearing loss and past-moderate tinnitus. I was screened every 6 months for hearing, every 3 months for vision (also have glaucoma) and didn't have any notable adverse effects. My ophthalmologist said in her long career, she has only had a handful of people that had visual problems, and my audiologist said she only had to stop meds on 4 people.
So the risk is relatively low compared to the danger of lung damage.
Have you started airway clearance yet? It can sometimes knock down MAC to the level you don't need antibiotics.
Sue

Yes, if the Mac or any lung disease is chronic, by all means add an ID to your team. I have found that these Doctors don't really push ACT's so find a good respiratory therapist or self-learn it.

Until recently I saw a pulmonologist and an infectious disease doctor for my MAC & Valley Fever. I now see only the infectious disease doctor who will order the blood tests and CT scans. If the CT results are not stable or impoving, I will return to the pulmonologist again. My pulmonologist made this recommendation.