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alm2019 (@alm2019)

Tests show Mycobacterium Chimaera

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

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@alm2019

Hi Ethan, thank you for your reply.
No, I have not had any heart surgery. I agree with you as so far all my research only point to post heart surgery contamination.
I don’t know how I managed to get this bug. I have been fairly healthy. Apart from a mild asthma which has been under control for many years I have had some chest infections in the past but nothing that a course of antibiotics can’t clear.
This time however I have had this cough since Nov 2018 and a course of antibiotics and 2 lots of steroids have not changed anything. I have most of the symptoms associated with this bug – persistent cough, lots of phlegm, weight loss, some night sweats, fatigue etc.
I’m seeing the specialist at the end of the month. She has indicated that I may have to go on the 3 antibiotics for some 18 months! Is that what has been referred to here as the big 3? I am concerned about the side effects.
Thanks for listening.

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Replies to "Hi Ethan, thank you for your reply. No, I have not had any heart surgery. I..."

Hi @alm2019 that must be very confusing.

In regards to your question on the big 3, that would be rifampin, ethambutol and azithromycin. Are those the three antibiotics you may have to start? If so, here is a discussion on some side effects of those medications along with some info on how people take them: https://connect.mayoclinic.org/discussion/the-big-3-antibiotics-for-mac/

Fellow connect users @windwalker, @megan123 and @anniepie have experience with the Big 3 and may be able to offer support for you as you start these medications.

@alm2019
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.
Shari

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