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A new diagnosis of Mycobacterium abscessus

MAC & Bronchiectasis | Last Active: 3 hours ago | Replies (12)

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Profile picture for kathyjjb @kathyjjb

Are you symptomatic? I was diagnosed in November 2024 for M.Abscessus. I had 3 positives before my local ID doctor started treatment; this was 3 weeks prior to me going to NJH in Denver.
The first day I was there, NJH doctor reduced my drug dosage by HALF. These antibiotics are toxic, so don't take more than you need. After my tests, the NJH doctor told me that NJH would not have started me on antibiotics and that I could go off of them. The MABC count was only 32 or 34, 400 and above is considered high. I did have symptoms but was told it was some other infection that caused my symptoms-not the Abscessus. My CTs have been stable for over 1.5 years. I nebulize 2/day with 7% followed by airway clearance using the Aerobika and I try to exercise daily. I have had negative cultures in the and my last culture count was 8 CFU/ML.
I was lucky to have a good pulmonologist that started me nebulizing with 7% immediately after the CT and first culture. If you have a low BMI, best to get that up and keep your body well nourished. I hope this helps. There are quite a few people on this forum who are "watching and waiting".

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Replies to "Are you symptomatic? I was diagnosed in November 2024 for M.Abscessus. I had 3 positives before..."

@kathyjjb yes I am symptomatic, coughing up blood every few days for months and 2 CT scans show nodular areas.

@kathyjjb
I so appreciate the information on your experience.
I do have a good Mayo pulmonary doctor. For now, (until he gets 3 positive cultures,) I’m doing airway clearance with 0.9% saline and levalbuteral. I had so much trouble last year when the airway clearance was causing lots of inflammation, increased cough, etc, so after experimenting with different saline, etc, this is what was suggested.
I’ve read a bit on MABC, but didn’t even know what questions to ask.