1. < MAC & Bronchiectasis

Anyone have cavitary MAC?

Posted by maureen2022 @maureen2022, May 23, 2022

Hi everyone,
I am 46 yo woman diagnosed with MAC. I have no bronchiectasis, but I have cavitation in one of the nodules. I started the meds 3 months ago and only mil side effects. I follow a good diet and lots of whole foods / probiotic & fermented food which helps. I was told I am a strange "bad luck" case since I have cavitation.

I was wondering if anyone else had cavitary disease and if it felt weird once the meds started. I never coughed or had a fever much but now I do cough a bit and feels like things are moving around. Any one else have cavitation and stories of how this felt as it was healing?

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maureen2022 | @maureen2022 | Mar 6, 2023
In reply to @bellsina71 "I have a 3.2 CM cavity and my infectious disease doctor said I'll be on meds..." + (show)
@bellsina71

I have a 3.2 CM cavity and my infectious disease doctor said I'll be on meds for 18 to 24 months! I guess every doctor is different and why they do what they do. I hope my cavity shrinks or goes away!

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Mine used to be 3cm but has now shrunk and thinned to 1 cm. Apparently it "looks good" for what thats worth. Good luck with your medication! I took probiotics every morning and ate mostly whole foods and that helped my stomach alot.

M

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suzyqueue | @suzyqueue | Mar 7, 2023

At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove that upper left lobe came to a hault when my right lung collapsed. I've been on the big 3 for 5 years and Arikayce (inhaled) for 4 years. The cavity has shrunk to a 4.

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3 replies
reneemc | @reneemc | Sep 4, 2023

Hello I was diagnosed with MAC in January. Started IVs in April Imipenem and Amikacin and oral Linezolid. Now Omadacycline and azithromycin.. Felt lots of creeping things moving in my lungs in the back

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2 replies
reneemc | @reneemc | Sep 4, 2023
In reply to @reneemc "Hello I was diagnosed with MAC in January. Started IVs in April Imipenem and Amikacin and..." + (show)
@reneemc

Hello I was diagnosed with MAC in January. Started IVs in April Imipenem and Amikacin and oral Linezolid. Now Omadacycline and azithromycin.. Felt lots of creeping things moving in my lungs in the back

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Unpleasant sensations . NP said you can’t feel bacteria dying but if you are very thin from this disease I think you can

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maureen2022 | @maureen2022 | Sep 5, 2023

I definitely felt things moving around for a while and then it stopped. I was on the big three for 13 months and the cavity showed healing i.e. thinned out and turned colour on the scan, etc. My doc says now I have no active infection.
I feel alot better since I stopped the big three, and just making sure to run and exercise, eat healthy etc. as I know these infections can come back again.

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Rick | @rstel7272 | Sep 5, 2023
In reply to @suzyqueue "At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove..." + (show)
@suzyqueue

At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove that upper left lobe came to a hault when my right lung collapsed. I've been on the big 3 for 5 years and Arikayce (inhaled) for 4 years. The cavity has shrunk to a 4.

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I have a similar cavity in my RUL that one Dr wants to remove.
My quality of life is pretty good right now so I resisted and changed to another Dr that is monitoring me more closely.

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reneemc | @reneemc | Sep 5, 2023
In reply to @suzyqueue "At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove..." + (show)
@suzyqueue

At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove that upper left lobe came to a hault when my right lung collapsed. I've been on the big 3 for 5 years and Arikayce (inhaled) for 4 years. The cavity has shrunk to a 4.

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What it’s like on the Arikayce?

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1 reply
suzyqueue | @suzyqueue | Sep 5, 2023
In reply to @reneemc "What it’s like on the Arikayce?" + (show)
@reneemc

What it’s like on the Arikayce?

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It took some getting used to with how much it makes you cough at first etc but I adjusted to it and it's been what shrunk the cavity and kept me stable

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reneemc | @reneemc | Sep 6, 2023
In reply to @reneemc "Hello I was diagnosed with MAC in January. Started IVs in April Imipenem and Amikacin and..." + (show)
@reneemc

Hello I was diagnosed with MAC in January. Started IVs in April Imipenem and Amikacin and oral Linezolid. Now Omadacycline and azithromycin.. Felt lots of creeping things moving in my lungs in the back

Jump to this post

It was abscessus with some cavitation now intracellular

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mokie | @mokie | Sep 6, 2023
In reply to @suzyqueue "At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove..." + (show)
@suzyqueue

At diagnosis, I had a 10 cm cavity in my upper left lobe. Plans to remove that upper left lobe came to a hault when my right lung collapsed. I've been on the big 3 for 5 years and Arikayce (inhaled) for 4 years. The cavity has shrunk to a 4.

Jump to this post

How is your hearing doing with Arikayce?

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