A new diagnosis of Mycobacterium abscessus

I had MAC 20 years ago and successfully treated it but it left me with Bronchiectasis which never was a problem for me all these years. However in October 25 I began having lung issues and now tests indicate Mycobacterium Abscessus.. it is the one with the Erm gene. I am going to start treatment soon which will be 4/6 weeks of IV infusions and then I will take oral meds. I am waiting some details to be sorted out before this therapy will begin. The IV meds are INSANELY costly even with insurance. 🥴

Thanks for your response.
My doctor said he needs 3 positive sputum cultures before deciding what path to take.

It seems like there is ambivalence about how and when to treat Abscesses. It is often considered a contaminant to a culture so that explains the idea of needing multiple positive cultures. In my case, with 2 distinct infections, the decision was made to treat th Aspergillus first and to decide about Abscesses later and that is where we stand- an art not a science

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".

@nlee1954 my cultures were from a broncoscopy washing so they normally feel that is pretty reliable.

@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.

@farfalina I'm sorry to hear that. I wish you luck in your treatment. Many do not have side effects, like I did. I do know someone that is getting treated with a virus in addition to the antibiotics. Listening to Dr Daly, it sounds like it's very effective-though there still is a lot of work in building the virus banks to match the M.Abscessus. Dr. Daly said that the virus doesn't kill the MABC but literally blows up the hard shell, so the antibiotics can get in.

@nlee1954 I just responded to farfalina about treating MABC with a virus along with the antibiotics. Dr Daly (NJH) had mentioned the treatment in one of his BE/NTM videos. My sister has a friend that is getting that treatment now. I'm hoping to talk to her sometime and will post any good info. It sounds like the antibiotics were unsuccessful and she sought out a clinic (don't know details) that is now giving her the matched virus via IV along with antibiotics.

@kathyjjb thanks. I will look into this. Interesting for sure!