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MAC antibiotics and side effects

MAC & Bronchiectasis | Last Active: Dec 29, 2023 | Replies (158)

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@sueinmn

Hi Arlo, the prospect of the 3 antibiotics scared most of us. I discussed it at length with my primary because the pulmonologist was not approachable. We decided that the severity of my cough and fatigue plus the many nodules in my lungs, and having asthma as well as bronchiectasis tipped the scales toward treatment. IF we had known then about 7% saline, and IF my lung CT was not so bad, we might have elected to wait and see. For the record, while the Big 3 were tough, I made it through with no effect on hearing or vision.
Have you read the latest recommendations from the Lung Assn and NJH on when to treat? Have you asked your pulmonologist why they are recommending treatment now? What did they see in the bronchoscopy and CT that say "treat now" vs "watch and wait"? Once an infection progresses to cavitary status, the treatment is less likely to be successful, the possibility of needing surgery increases and life expectancy decreases.
Please don't let fear of possible side effects drive your decision.
Sue

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Replies to "Hi Arlo, the prospect of the 3 antibiotics scared most of us. I discussed it at..."

Hi Sue,
My latest labs indicate I have pseudomonas. I had a bronchoscopy this week Results showed 1. Bronchiectasis and inflammation of airways
2. Mucus plugging . My dr showed a a sizable vial filled with yellow mucus. She is basing all this on the need for antibiotic treatment. I am not totally confident my dr is well-versed in BE and MAC. I just viewed lab results from mucus sample taken during the bronchoscopy. It said "MTB Complex Not Detected" ... but doesn't it take a few weeks to get final results? Last year I was told I was positive for MAC. I do not understand the other lab results taken but they were all well outside of the standard range.
On a brighter note: Cedars Sinai is here in Los Angeles. It has advanced lung disease experts and I have decided to go outside the Kaiser system and get a second opinion from one of their pulmonary doctors. Needless to say, I am quite overwhelmed by all of this and trying hard to keep my equilibrium.