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New to MAC and considering treatments options: What did you do?

MAC & Bronchiectasis | Last Active: 4 days ago | Replies (195)
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@riverstoni

I have had bronchiectasis for more than 15 years. In September, the cultures from a broncosopy revealed MAC… along with pneumonia and blood clots in both lobes of my lungs. I was immediately put on the big three drugs. I have been so sick ever since. I run low grade temps 3-4 days a week. Nausea and diarrhea the days I take the antibiotics. I am also on a blood thinner. All new to me. Am using oxygen as needed.

I firmly believe the cure is worse than the disease. I have not left the house for months. Please advise.

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Replies to "I have had bronchiectasis for more than 15 years. In September, the cultures from a broncosopy..."
pacathy | @pacathy | 4 days ago

I’m sorry we missed your post for a while. When they’re on older threads, they can get buried. It sounds like you’re having a tough time and I’m sorry for that.

Questions
Are you being seen by a doctor that sees a lot of MAC patients? An infectious disease doc?
I hope you’ve been in contact with you team since you posted this. They should have ideas for managing the side effects and/or adjusting frequency of meds. I don’t have MAC, but many of patients on this group take probiotics or eat yogurt to help with diarrhea.
Are you doing the airway clearance so often mentioned here?. Getting that mucus out helps your lungs provide more oxygen to your body and less likely to grow bad organisms.
Let us know how your are.

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