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MAC post Covid

MAC & Bronchiectasis | Last Active: Nov 25 2:16pm | Replies (7)

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@arkie01

Just diagnosed with MAI.
Was told I had COPD, 2 years ago. Then contracted Covid in April 2023. Had CT Jan 2024 and a CT w/contrast in June 2024. Nodules showed up in June that I did not have in Jan. They did a biopsy of nodules and a lung wash. Results were a diagnosis of MAI.
2nd CT w/contrast in Nov 2024 confirmed new nodules.
I’m extremely worried about taking the meds. 400 mg Ethambutol, 500 mg Azithromycin, & 300 mg Rifampin.
Optic neuritis, kidney failure, liver failure or heart problems. I’m over 70. Is this really the best and safest treatment. Also was curious if this (MAI) could be a result of Covid?

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Replies to "Just diagnosed with MAI. Was told I had COPD, 2 years ago. Then contracted Covid in..."

@arkie01 Welcome to Mayo Connect, and to the MAC & Bronchiectasis group. Nobody wants to be in this club, but you'll find us very helpful in sorting out this new, rare diagnosis and figuring out your next steps. MAC, sometimes called NTM (non-tubercular mycobacteria) affects only perhaps 500,000 people in the US so most doctors, and even some pulmonologists, are not familiar with the wide range of options one may try before resorting to antibiotics.

Not everyone with MAC (mycobateria avium complex) - of which MAI (mycobacteria avium intracellulare) is just one type - needs to take antibiotics, but many of us need them at some point.

I think you will get a variety of responses here, but I am going to start with a few questions.

First, are yo being trated by a pulmonologist familiar with MAC/NTM and its frequent companion Bronchiectasis? This is important for seeking out current treatment protocols and learning whether wwatchful waiting is an option.

One of the keys to trying to manage MAC without antibiotics is daily airway clearance, usually after nebulizing 7% saline. The neb helps bring up the mucus that harbores germs, and makes your lungs an inhospitable place for them to grow. If you have noet been taught to do this, it is a sign your doctor may not be the expert you need.

As to what caused the MAI, damaged lungs, whether with Bronchiectasis, COPD, Astma or repeated infctions are ideal hosts for the infection. Gtting Covid probably didn't help, as it stressed your immune sytem as well.

After reading this, do you feel like your pulmonologist is up-to-date in treating NTM/MAC?