1. < MAC & Bronchiectasis

Now infected with mycobacterium abscessus

Posted by pollyflinders @pollyflinders, Jul 31, 2023

Had follow up appointment today after broncoscopy. Have been on big 3 for 7 months for mycobacterium intracellulare and sample was clear for this …but now I’m infected with abscessus. So devastated and anxious. Not sure yet what treatment will be. Anyone else in same boat?

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Rick | @rstel7272 | Aug 10, 2023
In reply to @kathleenlp "Hi Polly, Yes, like you I went from the intracellulare to the abscessus over time +..." + (show)
@kathleenlp

Hi Polly, Yes, like you I went from the intracellulare to the abscessus over time + Aspergillus + bronchiectasis but was largely asymptomatic so they only treated the Aspergillus. Over the last 1 1/2 years my CT's have actually improved (unexpected), in part from learning and trying many things I learned about here! I study whenever I can and keep a strict regiment with my treatments, EXERCISE! and diet. The sodium chloride was a game-changer + learning the airway clearance that worked best for me. One pulmonary told me it could be hiding away dormant in one tiny place. I liked that idea! I have also been told the IV is the only treatment. The discouraging thing is such a large percentage re-infect after treatment so I would have to really weigh things if it comes to that. Blessings!!

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Polly, Have you ever been on Voriconazole (vfend)? I am starting month 8 on it for aspergillus.

REPLY
2 replies
kathleenlp | @kathleenlp | Aug 10, 2023

Hi Rick I think you were asking me...yes I was on it for 3 months I think...I have not had a test to see if it went away but would not be surprised either way. Even if you get rid of these things, because of our issues, you are a perfect host to get them again. I did not have any trouble with the Voriconazole thankfully.

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1 reply
sweethighland | @sweethighland | Aug 10, 2023
In reply to @kathleenlp "Hi Polly, Yes, like you I went from the intracellulare to the abscessus over time +..." + (show)
@kathleenlp

Hi Polly, Yes, like you I went from the intracellulare to the abscessus over time + Aspergillus + bronchiectasis but was largely asymptomatic so they only treated the Aspergillus. Over the last 1 1/2 years my CT's have actually improved (unexpected), in part from learning and trying many things I learned about here! I study whenever I can and keep a strict regiment with my treatments, EXERCISE! and diet. The sodium chloride was a game-changer + learning the airway clearance that worked best for me. One pulmonary told me it could be hiding away dormant in one tiny place. I liked that idea! I have also been told the IV is the only treatment. The discouraging thing is such a large percentage re-infect after treatment so I would have to really weigh things if it comes to that. Blessings!!

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"The sodium chloride was a game-changer". May I know what %?

REPLY
1 reply
pollyflinders | @pollyflinders | Aug 11, 2023
In reply to @rstel7272 "Polly, Have you ever been on Voriconazole (vfend)? I am starting month 8 on it for..." + (show)
@rstel7272

Polly, Have you ever been on Voriconazole (vfend)? I am starting month 8 on it for aspergillus.

Jump to this post

No. At present im just in the big 3 for the intracellulare.

REPLY
pollyflinders | @pollyflinders | Aug 11, 2023
In reply to @rstel7272 "Polly, Have you ever been on Voriconazole (vfend)? I am starting month 8 on it for..." + (show)
@rstel7272

Polly, Have you ever been on Voriconazole (vfend)? I am starting month 8 on it for aspergillus.

Jump to this post

Sorry! That wasn’t for me!

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michelleleonardo | @michelleleonardo | Aug 11, 2023

I have mycobacterium abscesses along with Mycobacterium Adium and Kansasii. I have been on the big 3 for two years along with inhaled Arikayce, linezolid and Clofazamine. I am being seen by Dr. Daley at National Jewish. He told me that very rarely do they ever get the abscesses to go away. So more than likely we will have to manage the symptoms. I’ve been dealing with all of this for two plus years now but I am still feeling great. I go back in September and I’m hoping for good news!

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1 reply
Rick | @rstel7272 | Aug 11, 2023
In reply to @kathleenlp "Hi Rick I think you were asking me...yes I was on it for 3 months I..." + (show)
@kathleenlp

Hi Rick I think you were asking me...yes I was on it for 3 months I think...I have not had a test to see if it went away but would not be surprised either way. Even if you get rid of these things, because of our issues, you are a perfect host to get them again. I did not have any trouble with the Voriconazole thankfully.

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Thanks, So many of us have or had aspergillus, I am searching for answers. I'm in month 8 of vfend and the worst side effect for me is my outer layer of skin just flakes off with the slightest contact. This is probably why the vfend patients are prone to skin cancer and vfend is banned in certain countries.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 11, 2023
In reply to @michelleleonardo "I have mycobacterium abscesses along with Mycobacterium Adium and Kansasii. I have been on the big..." + (show)
@michelleleonardo

I have mycobacterium abscesses along with Mycobacterium Adium and Kansasii. I have been on the big 3 for two years along with inhaled Arikayce, linezolid and Clofazamine. I am being seen by Dr. Daley at National Jewish. He told me that very rarely do they ever get the abscesses to go away. So more than likely we will have to manage the symptoms. I’ve been dealing with all of this for two plus years now but I am still feeling great. I go back in September and I’m hoping for good news!

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You are doing so well with that laundry list of meds - it must be your upbeat attitude!
Sue

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1 reply
michelleleonardo | @michelleleonardo | Aug 11, 2023
In reply to @sueinmn "You are doing so well with that laundry list of meds - it must be your..." + (show)
@sueinmn

You are doing so well with that laundry list of meds - it must be your upbeat attitude!
Sue

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I have been very fortunate. I think God daily for giving me another day! I try and do what I’m suppose to as well as exercise as they say that helps tremendously! Each of us is so different but we are in this together!

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kathleenlp | @kathleenlp | Aug 11, 2023
In reply to @sweethighland ""The sodium chloride was a game-changer". May I know what %?" + (show)
@sweethighland

"The sodium chloride was a game-changer". May I know what %?

Jump to this post

7% ....2X da day.....It does not bother me at all but I know some can't use it. It really clears out the mucus!

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