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Delaying treatment question

MAC & Bronchiectasis | Last Active: Oct 4, 2023 | Replies (38)

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@kwi

I was diagnosed as MAC positive almost 2 years ago by bronchoscopy. Pulmonologist and ID doctor both recommended starting treatment right away but I refused. My pulmonologist did recommend airway clearance, nebulizing albuterol and 7% saline but didn’t tell me about the need to disinfect my neb cups (which I learned from others). I did go to NJH last Dec and my sputum did not show MAC and has not shown up in the last couple cultures. Doctor doesn’t say it’s gone, just tapped down. I do show other bacteria (homophilus influenzae) which is not an NTM bacteria. MAC is a slow growing bacteria so you have time to think about it. Others have gone on the treatment because they are very sick and/or have significant damage to their lungs or just want to knock it out early.

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Replies to "I was diagnosed as MAC positive almost 2 years ago by bronchoscopy. Pulmonologist and ID doctor..."

Thanks so much for taking the time to share your experience with me - I very much appreciate that. I'm glad your MAC has not shown up in the last couple of cultures and, as your dr said, has been tapped down. That's great. Thanks again!

I have had MAC for at least 10 years. In 2013 could not tolerate Big 3 and my pulmonologist in NJ had no further advice. Now going to NJH and will likely start therapy