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alm2019 (@alm2019)

Tests show Mycobacterium Chimaera

MAC & Bronchiectasis | Last Active: Mar 13 3:15pm | Replies (33)

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Hello and welcome to connect.
I have not heard of the chimaera kind of mycobacteria either. I also hadn't heard of the kind I was diagnosed with serveral years ago. I had mycobacteria Abcessus.
Is it correct you haven't seen a specialist yet? How many sputums did you have positive for that bacteria? Most doctors wont consider treating until you had a least three positive sputums and a CT scan that suggested treatment. I was one of the lucky ones mine started testing negative after a year of positive tests for abcessus and I did not get any antibiotic treatment. There is a small percent that do change over to negative without treatment. So that's something to talk to your Dr regarding waiting. I hope this bacteria is a slow grower so maybe you don't need to rush into treatment. But again if your symptoms are bad you don't want to wait too long.
Hopfully @windwalker Terri can let you know how her mayo Dr. Does a rotational antibiotic treatment on her and she is doing great with that. I'm sure she will be chiming in soon.
Take care and do keep getting knowledge so you can make informed dicisions.

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Replies to "@alm2019 Hello and welcome to connect. I have not heard of the chimaera kind of mycobacteria..."

Thanks Shari, that’s why this forum is so useful to gain knowledge and I’m so thankful to chat to you guys. It gives me more insight and ‘courage’ to deal with this bugbear, excuse the pun!
3 out of my four sputum samples showed +ve for the bug although my CT scan does not show evidence of this infection. I’m waiting to hear from the specialist end of this month and will find out what treatment if any will be suggested. It’s a slow growing bacterium and as my CT scan shows no lung damage yet I hope to get as much info as I can for the next steps. Thanks again for your info and support.

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