A new diagnosis of Mycobacterium abscessus

Posted by Nancy @nlee1954, 16 hours 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!

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farfalina | @farfalina | 15 hours ago

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. 🥴