MAC Abscessus, What Big 3 or 4 or 5 antibiotics are people taking?

My doctor said maybe 15 months for Abscessus treatment. Do you have symptoms? You must be really tough, the antibiotic cocktail you took for abscessus sure sounds powerful. Linezolid can have horrific side effects and Omadacycline from what I read has a mortality rate of 2%-wonder what it is for those over 65? I'm sure glad you got rid of the Mycobacterium Abscessus.

Are you aware that Ethambutol can affect the Optic Nerve? (eye) If you are, then you know you should have regular eye exams. Arikayce and amikacin can affect your hearing (cochlear tissue) and can cause ringing in your ears. Clofazimine can make you tan or as my pulmonologist said "make you look you have been to a resort."
I have not been on Ethambutol; but I have been on the other three.
Mycobacterium abscessus subspecies abscessus Erm 41 2years 3 months

Kept trying the Linezolid but eventually switched to Rifampin . The Rifampin caused severe side effects had to go to ED.
Yes, I have regular hearing test and eye exams.
The main symptoms I deal with are constant throat clearing and I see pain management Dr for chest and back pain.

I 'converted my Abscessus (whatever that means) after two months of IV therapy in the Spring of 2023
Now it is back. I return to UT East Texas the first week of May. I do nebulizer breathing treatments w/ sodium chloride and various airway clearance methods 2X/daily. I also have Bronchiectasis.

The main symptom for me, also, is the constant throat clearing. The sputum just seems to keep on coming up into my 'throat' and more so after I eat.
I have been told by the GI doctor at NJH that I have a small hiatal hernia. This was found with the testing there. I read that a hiatal hernia can also cause overproduction of mucus and the constant need to clear the throat.
The problem is, I don't know, and how would one actually know, if it is coming from the hiatal hernia or my lungs with the Bronchiectasis/MAI. Wish they had a way of knowing and seeing it happen as it happens.
Do you have another diagnosis that might be causing the constant throat clearing?
Barbara

The Bronchiectasis and MAC. I’ve had scans and ultrasounds looking for what causes the symptoms and specifically the incredible pain.
Sent my first sputum to NJH today, hoping to get in and get some relief

Hi. How are you feeling now? Did you have oral pills for all 3 drugs? How did you find out it was clear after 8 weeks….CT scan or sputum result?
Hope you have a great day today. Thanks.

Hi Nancy, I'm curious how you are doing? I was at NJH last week and Dr Haas told me the recurrence/reinfection rate for Abscessus is 50%. I am currently waiting on my 3rd 30-day consecutive culture result, to determine "culture conversion". Hearing there is a 50% chance of it coming back is disheartening.

The Linezolid and Omadacycline were pills in addition to the IV meds for Abscessus
I have had 4 consecutive negative sputum cultures from the MAC I’m still taking Azithromycin Ethambutol, Clofazimine. Just stopped the Arikayce because Dr is trying to figure what is causing the hemoptysis

Yes. You were told correctly from both everything I have read and what my Infectious Disease physician told my husband and I in early August that A subsp A has a low ‘cure’ rate. I had Abscessus subsp Maissilence the previous time. It has a better ‘cure’ rate 80%. Yes it is all very disheartening. These diseases caused by bacilli have been difficult to discover cures for throughout history.
Keep in touch. Ask any questions.