A new diagnosis of Mycobacterium abscessus

Posted by Nancy @nlee1954, 1 day ago

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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. 🥴

REPLY

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

REPLY

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

REPLY
Please sign in or register to post a reply.