1. < MAC & Bronchiectasis

Now infected with mycobacterium abscessus

Posted by pollyflinders @pollyflinders, Jul 31, 2023

Had follow up appointment today after broncoscopy. Have been on big 3 for 7 months for mycobacterium intracellulare and sample was clear for this …but now I’m infected with abscessus. So devastated and anxious. Not sure yet what treatment will be. Anyone else in same boat?

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cattleya | @cattleya | Nov 6 9:29am
In reply to @thielmann1 "I have abcessus as well. Dr did tests to see best drug to use. I’m am..." + (show)
@thielmann1

I have abcessus as well. Dr did tests to see best drug to use. I’m am currently on inhaled Amikacin, azithromycin, and clofazimine. I have also been on IV form previously. I make sure to take a probiotic as well. Hope all goes well for you.

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Hello. I'm fairly new to this site and just saw your post. How are you doing? Well, I hope! I'd be interested to know how you did on the meds. I have abscessus and am reluctant to start the antibiotics.

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tomed | @tomed | Nov 6 4:13pm
In reply to @thielmann1 "I have abcessus as well. Dr did tests to see best drug to use. I’m am..." + (show)
@thielmann1

I have abcessus as well. Dr did tests to see best drug to use. I’m am currently on inhaled Amikacin, azithromycin, and clofazimine. I have also been on IV form previously. I make sure to take a probiotic as well. Hope all goes well for you.

Jump to this post

My spouse was just dx’d with abcescuss as well - Univ of Penn ID group is getting him started on the same regiment. Any suggestions for starting this cocktail?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 8 10:02am
In reply to @tomed "My spouse was just dx’d with abcescuss as well - Univ of Penn ID group is..." + (show)
@tomed

My spouse was just dx’d with abcescuss as well - Univ of Penn ID group is getting him started on the same regiment. Any suggestions for starting this cocktail?

Jump to this post

First, baseline hearing and vision screenings since some meds can cause problems with these. Then one med at a time, preferably for one or two weeks. That way if you react badly. Depending on the "cocktail" prescribed, the doctor can advise on the order to try.

There may be nausea, loss of appetite, or altered taste sensation, so figure out what foods appeal and offer them in frequent, small amounts. Concentrate on high density nutrition, protein and calories - nuts, dairy if tolerated, protein shakes or smoothies...

Also ask to have help on-hand for excessive nausea or diarrhea if they occur, so you can treat quickly.

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