A new diagnosis of Mycobacterium abscessus
I’ve had BE and MAC for 3-4 years. I started on the big 3 last Spring but had to quit because of the terrible side effects.
A couple of weeks ago my sputum grew
Mycobacterium abscessus. I’d like to have anyone here who has been diagnosed with this to share their experience. Thank you!
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@nlee1954 MABC is a challenge to cure, difficult but my ID doc says not impossible. Let’s keep positive that we will be in the percentage of patients who overcome this bug!
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1 Reaction@kathyjjb
I had to read it a couple of times about treating it with a virus. Do you know what virus, (maybe a dumb question)
@farfalina It's called "PHAGE" Therapy. Sorry, they are viruses but it's called phage. I did do a little research and learned that they are now only approved for those where antibiotics have not helped and the disease has seriously progressed. Not yet, FDA approved for standard treatment. I hope that in 5-10 years it will become standard treatment so that antibiotic treatment will be more successful.
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1 Reaction@nlee1954 It's called Phage Therapy. All I know is that Companies are creating phage banks. The virus or phage would be specific to the exact genetic makeup of the NTM strain. Sounds like there's a lot of NTM variance if a "bank" of these phages need to be collected and stored. I did listen to a youtube presentation and the founder of one of the phage banks spoke about looking in the environment for these natural occurring phages.
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1 Reaction@kathyjjb
So interesting and exciting to hear of new treatments. I will look up the information. Thank you!
Good Morning,
I was diagnosed with with both avium and abscessus in December 2025. I was on iv imepenem and tigecycline and azithromycin daily until late January. I started having issue with high liver enzymes and now I’m on azithromycin, Clofazimine e and Omadacycline daily. My abscessus is resistant to all but 4 antibiotics so now I’m on the three that are left. My sputum test last month was negative for abscessus but positive for avium. I will see what my ID doctor has in store for me on May 20th. It’s a long road to recovery but I have not been sick from my meds only fatigue which I can manage.
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3 Reactions@louis228 Are you also doing airway clearance to get the mucus out?
@sueinmn Hi Sue,
I am doing ACTs twice a day and the productivity of sputum has dropped drastically in the past two months. My only symptom is some fatigue but I workout daily for an hour with weights and walk 3-5 miles plus cycle 20-30 miles 3 days a week.
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2 Reactions@louis228 Excellent! I find exercise the most important aspect of my airway clearance. But your routine puts me to shame!
I stopped antibiotics over 6 years ago when some of my sputum cultures will still positive, relying on airway clearance with saline nebs (at mist daily, occasional now)and I have been MAC-free since 2020.
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1 Reaction@louis228
You are an inspiration!