1. < MAC & Bronchiectasis

New cavity after testing negative for MAC

Posted by thorne @thorne, Apr 11 9:55am

Hi everyone. Over the last year, I have had three sputum tests, all negative for MAC. But I just completed a CT scan (one year from my last) and it showed a new cavity. Has anyone else experienced this? Does it just mean MAC is in there somewhere but just not in the sputum I am submitting for the tests? Any theories would be welcome.

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jassa | @jassa | Apr 11 3:32pm

The MAC is not gone. You can't just rely on sputum tests. Not all sputum will contain the bacteria in your lung. It's best to take 3 separate sputum tests for better accuracy. Or, you've been reinfected, which seems to be common.

REPLY
jnmy | @jnmy | Apr 12 1:34pm

If people are getting reinfected with MAC after a year or so of taking three antibiotics (the big 3) , does it mean you repeat the lengthy regime of months of antibiotics again? Are some pulmonologists or infectious disease doctors reluctant to keep using these antibiotics? Does state of BE disease and whether MAC or an NTM is present in sputum have an impact on antibiotic treatment? So many questions.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 12 1:47pm
In reply to @jnmy "If people are getting reinfected with MAC after a year or so of taking three antibiotics..." + (show)
@jnmy

If people are getting reinfected with MAC after a year or so of taking three antibiotics (the big 3) , does it mean you repeat the lengthy regime of months of antibiotics again? Are some pulmonologists or infectious disease doctors reluctant to keep using these antibiotics? Does state of BE disease and whether MAC or an NTM is present in sputum have an impact on antibiotic treatment? So many questions.

Jump to this post

Do you repeat the lengthy treatment? Maybe - but even reinfection after treatment is weighed on the scale of when/whether to treat depending on the amount of bacteria, the specific type, the CT scan (cavities or nodules) and other symptoms.

There are as you say "so many questions" - and so many variables. If I am ever told that I have MAC again, I will head right for a specialty clinic that has the most experience and uses the latest protocols in treating it.

It is rare for a pulmonologist in general practice to see more than a few cases of bronchiectasis in a year - and rarer still to see a MAC infection. Thus many of them are unaware of the importance of things like daily airway clearance and using 7% saline nebs to suppress bacteria growth in the lungs.

Are you being seen by someone experienced in treating Bronchiectasis-caused lung infections?
Sue

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1 reply
ecoen | @ecoen | Apr 12 3:58pm

I had an endoscopy and they identified aspergillus as well as MAC in my lungs. My understanding is that both of these infections can create cavities. I am being treated for the aspergillus for one month, will have a CT scan to see if there is any improvement, and will then add the Big 3 and possibly an infusion to my regime. I am taking Cresemba for the aspergillus. I am hoping that we will see a decrease in the size of my cavity. Fingers crossed.

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2 replies
irene5 Irene Estes | @irene5 | Apr 13 7:03am
In reply to @ecoen "I had an endoscopy and they identified aspergillus as well as MAC in my lungs. My..." + (show)
@ecoen

I had an endoscopy and they identified aspergillus as well as MAC in my lungs. My understanding is that both of these infections can create cavities. I am being treated for the aspergillus for one month, will have a CT scan to see if there is any improvement, and will then add the Big 3 and possibly an infusion to my regime. I am taking Cresemba for the aspergillus. I am hoping that we will see a decrease in the size of my cavity. Fingers crossed.

Jump to this post

@ecoen Having both MAC and aspergillosis is a no bueno, but being able to have Cresemba is a plus. You are fortunate with that. My UMass pulmonologist calls it “Gold”. Too pricey for many unless insurance covers it . It is better tolerated than Vfend so you are fortunate. Usually a month is not enough - 6 weeks is the norm. Wishing you well! @irene5

REPLY
Rick | @rstel7272 | Apr 13 9:47am
In reply to @ecoen "I had an endoscopy and they identified aspergillus as well as MAC in my lungs. My..." + (show)
@ecoen

I had an endoscopy and they identified aspergillus as well as MAC in my lungs. My understanding is that both of these infections can create cavities. I am being treated for the aspergillus for one month, will have a CT scan to see if there is any improvement, and will then add the Big 3 and possibly an infusion to my regime. I am taking Cresemba for the aspergillus. I am hoping that we will see a decrease in the size of my cavity. Fingers crossed.

Jump to this post

In my case, it was MAC -> Cavity -> Aspergillus. All over a 8-10 year period.
Here is a link to a good paper on the MAC to Aspergillus relationship ..

https://www.mdpi.com/2309-608X/6/4/346
REPLY
jnmy | @jnmy | Apr 14 11:55am
In reply to @sueinmn "Do you repeat the lengthy treatment? Maybe - but even reinfection after treatment is weighed on..." + (show)
@sueinmn

Do you repeat the lengthy treatment? Maybe - but even reinfection after treatment is weighed on the scale of when/whether to treat depending on the amount of bacteria, the specific type, the CT scan (cavities or nodules) and other symptoms.

There are as you say "so many questions" - and so many variables. If I am ever told that I have MAC again, I will head right for a specialty clinic that has the most experience and uses the latest protocols in treating it.

It is rare for a pulmonologist in general practice to see more than a few cases of bronchiectasis in a year - and rarer still to see a MAC infection. Thus many of them are unaware of the importance of things like daily airway clearance and using 7% saline nebs to suppress bacteria growth in the lungs.

Are you being seen by someone experienced in treating Bronchiectasis-caused lung infections?
Sue

Jump to this post

Thanks @sueinmn
Yes, my pulmonologist seems to be a respiratory specialist with knowledge of Bronchiectasis and the related complications. I was told to try the Aerobika which works well. I don’t have access to a large teaching and research hospital like the Mayo Clinic, so specialists aren’t linked in that way. I don’t have MAC, but I would also want someone who has a lot of experience treating it, if ever I do. Thanks for the information.

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