1. < MAC & Bronchiectasis

Lung cavities after covid: MAC or covid?

Posted by thorne @thorne, Jul 15, 2022

Hi everyone, I contracted covid mid-May and thankfully had (what I thought was) a mild case. Several weeks afterwards, I had a chest pain and a chest CT and I had a cavity. Since I have no cough or sputum, I did a sputum session at the hospital and the culture came back MAC positive (17 colonies). Has anyone else had their cavity appear immediately following a bout of covid? I am just struggling to discern whether the cavity was caused by the MAC or the covid or both. Thanks!

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thorne | @thorne | Aug 13, 2022
In reply to @extracare808 "Per NTM treatment guidelines and FDA recommendation, Arikayce is only recommended in the case of refractory..." + (show)
@extracare808

Per NTM treatment guidelines and FDA recommendation, Arikayce is only recommended in the case of refractory disease. Refractory/stubborn NTM is defined as lack of sputum conversion after at least 6 months on standard treatment (Big 3). I just started on Arikayce after 10 months of standard treatment (with only one month negative). On the plus side, my cavity did shrink by almost 50% after 7 months of 3 x week Big 3 treatment.

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Thanks for the reply. How big was your cavity to start?

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1 reply
extracare808 | @extracare808 | Aug 14, 2022
In reply to @thorne "Thanks for the reply. How big was your cavity to start?" + (show)
@thorne

Thanks for the reply. How big was your cavity to start?

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When I was initially diagnosed, it was 1.1 cm, then grew to 2.2 cm (prior to treatment). Per my last CT, it's back down to 1.1 cm and looked like it was collapsing and turning into scar tissue. Hoping the daily meds and Arikayce will deal it the 'death blow'.

There's someone on here who had multiple large cavities and participated in the Arikayce trial. She said it closed up all her cavities.

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bellsina71 | @bellsina71 | Feb 20, 2023
In reply to @thorne "I have bronchiectasis discovered in a CT two years ago. Never smoked. Cavity is 1.5 cm...." + (show)
@thorne

I have bronchiectasis discovered in a CT two years ago. Never smoked. Cavity is 1.5 cm. Leaning toward treatment but really torn on whether to add the aerikayce. This forum has been a wonderful resource the past week since my diagnosis as I try and decide what to do.

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I know this is an old post, but I just found out I have mac and I have a cavity and I'm wondering what you ever decided to do and if it worked for you? If you're still on here can you please respond. I'm really scared

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thorne | @thorne | Feb 21, 2023

How big is your cavity? The most important thing is to start doing daily airway clearance using saline. When I was diagnosed, I did not want to take Rifampin because people seem to really struggle with the side effects so I entered a clinical trial with daily Azithromycin and Ethambutol and inhaled Arikayce or placebo. I think they are still taking patients -- if you are interested, I can send you the link. I will be having a CT scan in June to see if my cavity resolved. In the meantime, I posted things that helped me when I was first diagnosed -- you can find that at this link https://connect.mayoclinic.org/discussion/things-that-made-managing-these-diseases-easier/

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bellsina71 | @bellsina71 | Jul 15, 2023
In reply to @thorne "I have bronchiectasis discovered in a CT two years ago. Never smoked. Cavity is 1.5 cm...." + (show)
@thorne

I have bronchiectasis discovered in a CT two years ago. Never smoked. Cavity is 1.5 cm. Leaning toward treatment but really torn on whether to add the aerikayce. This forum has been a wonderful resource the past week since my diagnosis as I try and decide what to do.

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I have a 3.7 CM cavity. I had woke up in January coughing up blood. I have been on azithromycin and ethambutol everyday. I have not been on rifampin because it will lessen the effect of another drug I take. I just had a CT scan done a month ago, it's been about 3 months since I've been on the antibiotics. All of the consolidation and nodules have cleared up and the walls of the cavity went from 15 mm to 5. I just started the Airakayce a couple weeks ago. I have not had any side effects at all. I haven't had any side effects with any of this. I don't cough I can breathe fine. I went and saw an allergist and she ran so many tests and all of them came back negative, I had a pulmonary test done and they said mild obstruction from probably smoking but she said it was so mild that it actually would be in the normal range had they not ever known I smoked. There doesn't seem to be a lot of rhyme or reason why I got this. But I decided to take the airkayce because I have the cavity and because I couldn't be on the third drug that people with cavitery Mac should be on. I think most people take it when they're not responding to other drugs and honestly I don't even know if I'm doing the right thing. I'm just doing what my doctors telling me to though and as long as I'm not having any horrible side effects I would rather do what I can so it doesn't get worse or the cavity doesn't get larger, etc. It has to be a personal choice though. I will say being on the nebulizer is a bit of a pain though.. it's a process that takes about 40 minutes every day. I really hope the results will be worth it though. Good luck with everything. You can always increase the drugs or decrease them depending on how you're feeling and what's working or not working for you.
Angela

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2 replies
bellsina71 | @bellsina71 | Jul 15, 2023
In reply to @bellsina71 "I have a 3.7 CM cavity. I had woke up in January coughing up blood. I..." + (show)
@bellsina71

I have a 3.7 CM cavity. I had woke up in January coughing up blood. I have been on azithromycin and ethambutol everyday. I have not been on rifampin because it will lessen the effect of another drug I take. I just had a CT scan done a month ago, it's been about 3 months since I've been on the antibiotics. All of the consolidation and nodules have cleared up and the walls of the cavity went from 15 mm to 5. I just started the Airakayce a couple weeks ago. I have not had any side effects at all. I haven't had any side effects with any of this. I don't cough I can breathe fine. I went and saw an allergist and she ran so many tests and all of them came back negative, I had a pulmonary test done and they said mild obstruction from probably smoking but she said it was so mild that it actually would be in the normal range had they not ever known I smoked. There doesn't seem to be a lot of rhyme or reason why I got this. But I decided to take the airkayce because I have the cavity and because I couldn't be on the third drug that people with cavitery Mac should be on. I think most people take it when they're not responding to other drugs and honestly I don't even know if I'm doing the right thing. I'm just doing what my doctors telling me to though and as long as I'm not having any horrible side effects I would rather do what I can so it doesn't get worse or the cavity doesn't get larger, etc. It has to be a personal choice though. I will say being on the nebulizer is a bit of a pain though.. it's a process that takes about 40 minutes every day. I really hope the results will be worth it though. Good luck with everything. You can always increase the drugs or decrease them depending on how you're feeling and what's working or not working for you.
Angela

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I'm sorry just wanted to add that it would be really hard to know if it's covid related or not unless you had a CT scan done prior to covid and there was nothing that was showing any nodules or the beginning of a cavity, etc... I haven't had a long CT since 2011 prior to this year and that 2011 CT scan actually showed small little nodules right where the cavity had formed. My doctor couldn't say for sure but he said that there was a possibility that that was the beginning of it way back then. He doesn't know positively but he said I've had it for years, and that being said he told me that it was a very mild case. Even with the cavity that large. Crazy?!?! Doesn't seem right to me but I'm not a doctor.
Angela

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Rick | @rstel7272 | Jul 16, 2023
In reply to @bellsina71 "I have a 3.7 CM cavity. I had woke up in January coughing up blood. I..." + (show)
@bellsina71

I have a 3.7 CM cavity. I had woke up in January coughing up blood. I have been on azithromycin and ethambutol everyday. I have not been on rifampin because it will lessen the effect of another drug I take. I just had a CT scan done a month ago, it's been about 3 months since I've been on the antibiotics. All of the consolidation and nodules have cleared up and the walls of the cavity went from 15 mm to 5. I just started the Airakayce a couple weeks ago. I have not had any side effects at all. I haven't had any side effects with any of this. I don't cough I can breathe fine. I went and saw an allergist and she ran so many tests and all of them came back negative, I had a pulmonary test done and they said mild obstruction from probably smoking but she said it was so mild that it actually would be in the normal range had they not ever known I smoked. There doesn't seem to be a lot of rhyme or reason why I got this. But I decided to take the airkayce because I have the cavity and because I couldn't be on the third drug that people with cavitery Mac should be on. I think most people take it when they're not responding to other drugs and honestly I don't even know if I'm doing the right thing. I'm just doing what my doctors telling me to though and as long as I'm not having any horrible side effects I would rather do what I can so it doesn't get worse or the cavity doesn't get larger, etc. It has to be a personal choice though. I will say being on the nebulizer is a bit of a pain though.. it's a process that takes about 40 minutes every day. I really hope the results will be worth it though. Good luck with everything. You can always increase the drugs or decrease them depending on how you're feeling and what's working or not working for you.
Angela

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My case is very similar. Mac/cavitation treated for 3 years, a 6 month break now fungal infection/cavitation treatment for the past year. While the infections may change, my cavitation is permanent. I have/had an unbelievable number of Dr's, mes's and tests. But I do well, I have learned to live with it and lead a semi-normal life.

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Rick | @rstel7272 | Jul 16, 2023

My Mac/cavitation was diagnosed a full year before the covid outbreak. Still seems fishy to me, since myself and my wife are the only ones I know that have not had covid at any time. Me with ILD, she is a PA.

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