MAC post Covid

Posted by med08 @med08, Aug 3, 2022

I had Covid Jan 2021. I was feeling very tired and my allergies were acting up. I went to Allergist and all tests were negative. He did chest X-ray and it was fairly normal. I was told by doctor, this is normal with asthma can repeat nebulizer treatment in 6 months & sent on my way. I f/u with PCP being I don’T have Asthma. I upped my protein for the exhaustion & blood work was all good. She referred me to pulmonologist, to see about the asthma. I Had a CT chest and I have been diagnosed after much other testing with MAC lung disease. I’m now waiting for sensitivity testing, but I, as well as my doctor, feel the treatment is worse than the disease at this time. If I didn’t have CT chest I wouldn’t know I was sick really. However my CT’s have gotten relatively worse over the last year and a half. I did the 3% saline nebulizer at beginning of year, I feel it just dries me out giving me a sore throat. After reading a bunch of posts I just started the 7% saline nebulizer, to see if I can tolerate. Any suggestions? I also ordered book on hydrogen peroxide nebulizer therapy. I just want it to stop progressing before I need the treatment. I am at such a loss right now.

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

I had Covid Jan 2021. I was feeling very tired and my allergies were acting up. I went to Allergist and all tests were negative. He did chest X-ray and it was fairly normal. I was told all is normal with asthma can repeat nebulizer treatment in 6 months & sent on my way. I f/u with PCP being I don’T have Asthma. I upped my protein for the exhaustion & blood work was all good. She referred me to pulmonologist. Had a CT and I have been diagnosed after much other testing with MAC lung disease. Anyone diagnosed with MAC since having Covid?

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Hello and welcome to Mayo Connect. The early days of dealing with a diagnosis of MAC can be overwhelming, with the "specter" of the antibiotics, choices of treatments, and trying to decide what is the best option.

You have been reading about 7% saline, and that has been a real game changer for many of us, enabling us to stay off antibiotics, reduce exacerbations and stay healthy. It is harsh, so many people alternate with 3% saline, or mix the 2. There is a lot of evidence that 7% saline, along with airway clearance by coughing or using a vibratory device, can suppress MAC infection without antibiotics.

As for using hydrogen peroxide, there was an earlier discussion here; https://connect.mayoclinic.org/discussion/just-how-well-do-nebs-work-anyway/?pg=2#comment-647172.
I went looking, and cannot find any new scientific evidence to support it, nor any support at National Jewish Health, the epicenter for treating MAC. I would recommend against adding it to your regimen without a lot more evidence of safety and usefulness - your body is already struggling to heal from Covid and deal with the new infection.

Have you discussed non-antibiotic options with the pulmonologist?
Sue

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Hi, @med08 ~
I have been diagnosed with bronchiectasis but have not tested positive for anything but pseudomonas which I took two rounds of Cipro and a short round of prednisone and faithful nebulizing twice and sometimes three times per day was able to eradicate. I do not have asthma but found that nebulizing .63 mg levalbuterol before I nebulize my 7% helps with irritation. You can also get a child's dose of .31 mg that I might talk to my pulmonologist about trying the next time I have an appointment. I think even though I don't have asthma those lower doses open up my airways enough to make the saline more effective and less irritating.
Best of luck to you on finding a treatment plan and routine that works for you. Do you have an appointment with and infectious disease doctor? I know many others on this site have multiple doctors to manage their various NTM bacteria.
Sending hugs and well wishes your way.
~Echo

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@coco1970

Hi, @med08 ~
I have been diagnosed with bronchiectasis but have not tested positive for anything but pseudomonas which I took two rounds of Cipro and a short round of prednisone and faithful nebulizing twice and sometimes three times per day was able to eradicate. I do not have asthma but found that nebulizing .63 mg levalbuterol before I nebulize my 7% helps with irritation. You can also get a child's dose of .31 mg that I might talk to my pulmonologist about trying the next time I have an appointment. I think even though I don't have asthma those lower doses open up my airways enough to make the saline more effective and less irritating.
Best of luck to you on finding a treatment plan and routine that works for you. Do you have an appointment with and infectious disease doctor? I know many others on this site have multiple doctors to manage their various NTM bacteria.
Sending hugs and well wishes your way.
~Echo

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I have met with infectious disease Dr. She thinks treatment is worse than disease at least at this point. However we are waiting on sensitivity testing and we did some blood work that was all good. I will f/u with her in September.

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You have found a great forum to learn about your lung issues. BUT : many physicians and dermatologists advise not to use hydrogen peroxide to clean skin wounds. This is because the fizzling action not only kills bacteria but healthy skin cells too. This can slow down the healing process and possibly worsen scarring. Disinfecting wounds with hydrogen peroxide can do more harm than good. So inhaling this product into your lungs really makes me cringe. Organizations such as the COPD Foundation and the AAFA state that using nebulized hydrogen peroxide to treat COPD or any lung conditions is dangerous and may cause serious side effects. Check out the Summary in this link https://www.medicalnewstoday.com/articles/nebulizing-hydrogen-peroxide-for-copd#summary

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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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@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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@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?

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