MAC Abscessus, What Big 3 or 4 or 5 antibiotics are people taking?
I will soon be starting meds for MAC Abscessus that is macrolide resistant. Curious what people are taking and results?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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If hemoptysis is bleeding then it was the same for me on the azithromicin/clofazimine/Amakacin combo
Good news that you had 4 consecutive negative sputum cultures, that’s encouraging.
Take care!
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1 Reaction8 more 🙏🏼then I can stop the antibiotics. I’ve been on various antibiotics since 4/23
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1 ReactionDid you have both MAC and MAB? MAC is Mycobacterium Avium Complex and MAB is Mycobacterium Abscessus Complex. I have had 4 negative MABC cultures over the course of 3 months, and a new nodule was noted on my CT scan, last week. So, who knows what that is-just hoping it's not the MABC. I sure hope your negatives continue, sending prayers your way.
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1 ReactionWas diagnosed with both my bronchoscopy 12/22. After 8 weeks of treatment for Abscessus it never showed up in sputum again.
I have cavities that are very slow to improve. Last 4 cultures negative for AFB
@kathyjjb
Kathy, where are you located? I'm in Phoenix and going to Dr. Iusum at the Banner Lung Inst.
I have Mycobacterium Abscessus. We think I got it from running a humidifier in the bedroom at night using RO water. I've now turned my water heater to high. Water is coming out at 150 degrees. I'm hoping to kill any bacteria in it since this is in our water supply in Phoenix.
NJH is supposed to be the best in the country. I wish you well and hope you can find a drug therapy that knocks it out quickly for you. Best of luck to you.
@djwork1 I'm in Scottsdale. Are you on Antibiotics? Or, is your doctor waiting and watching? Are you nebulizing with 7% saline? I was only on antibiotics 3 weeks when I went to NJH and my NJH ID doctor told me my count was so low, that they would never have started the drug treatment. I send all my sputum samples to NJH, since they do counts on every culture. From May to October all my cultures were negative, and then November's culture came back positive again for MABC. Ugh. I'm still waiting on the count. Still feeling good-but I'm nebulizing 2/day.
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1 ReactionI've had only 1 meeting with my pulmonologist. She was waiting 6 months to see how fast it was growing. My big nodule is now 6mm. That's when she starts to get concerned. I see her next week.
I have a dry cough. No sputum at all. I have to have a bronchoscopy and lungs flushed to get a sample. I'm not on any treatment now. We'll see what next week brings.
Did you spend a week at NJH for an evaluation?
I'm just starting this journey.
I hope your Dec count is low and you're free of this soon.
@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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1 ReactionThank you for that info. I will definitely ask about that study and nebulizing. That's very helpful.