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MAC Abscessus, What Big 3 or 4 or 5 antibiotics are people taking?

Posted by kathyjjb @kathyjjb, Mar 20, 2025

I will soon be starting meds for MAC Abscessus that is macrolide resistant. Curious what people are taking and results?

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kathyjjb | @kathyjjb | Jan 6 10:04pm

There's been a few studies. Have you considered going to NJH? I would think your doctor would encourage that. I called NJH about 2 months after my diagnosis, it takes a while to get in.

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blm1007blm1007 | @blm1007blm1007 | Jan 7 11:23am
In reply to @kathyjjb "@djwork1 Thank you. I'm keeping my fingers crossed. I was diagnosed in Nov 2024 and my..." + (show)
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@djwork1 Thank you. I'm keeping my fingers crossed. I was diagnosed in Nov 2024 and my PHX Pulmonologist got me started on nebulizing 2/day with 7% saline. I am very grateful to him for that. I believe I cleared it for 5-6 months due to my nebulizing. There have been limited studies on the effectiveness. I read one study that showed 25% had culture conversion for nodular infection (not including cavity disease) without antibiotics. I went to NJH in May 2025 and was there for 8 days over the course of 2 weeks. I'm so glad I went to NJH!!! My NJH ID doctor was very insistent that I continue nebulizing with 7% (not 3%). Nebulizing and Airway clearance will help you cough up sputum, so possibly you could avoid future bronchoscopies. I used to be the same was, just a dry cough but nebulizing has changed that. The Portland Clinic has just wrapped up a nebulizing study (with 7%) with a larger sample population of those with BE and NTM, not sure when it will be published but hopefully soon. You might want to message or discuss with your local doctor. Kathy

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@kathyjjb When and if you see the results of the ....Portland Study...... hopefully you will be able to send us the information/link etc on Mayo. That would be great if possible.
Barbara

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kathyjjb | @kathyjjb | Jan 7 12:14pm
In reply to @blm1007blm1007 "@kathyjjb When and if you see the results of the ....Portland Study...... hopefully you will be..." + (show)
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@kathyjjb When and if you see the results of the ....Portland Study...... hopefully you will be able to send us the information/link etc on Mayo. That would be great if possible.
Barbara

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@blm1007blm1007 Definitely! I figure it's at least 4 months out, since they would be doing AFB smears/cultures at the end of the study, which was 12/31/2025. On their website, they put aside 12 weeks for the final testing portion. Then how long it takes to evaluate, write up, and post? I will definitely post something as soon as I hear or see anything.

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blm1007blm1007 | @blm1007blm1007 | Jan 7 4:22pm
In reply to @kathyjjb "@blm1007blm1007 Definitely! I figure it's at least 4 months out, since they would be doing AFB..." + (show)
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@blm1007blm1007 Definitely! I figure it's at least 4 months out, since they would be doing AFB smears/cultures at the end of the study, which was 12/31/2025. On their website, they put aside 12 weeks for the final testing portion. Then how long it takes to evaluate, write up, and post? I will definitely post something as soon as I hear or see anything.

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@kathyjjb Thank you, regarding ....Portland Study.......

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