Tests show Mycobacterium Chimaera

Hi @alm2019 and welcome to Connect. That must be frightening to have this diagnosis.

I wanted to share this link on mycobacterium chimaera: https://www.nhs.uk/conditions/mycobacterium-chimaera/

I also wanted to talk @windwalker and @tdrell. Although they have different infections, they may be able to offer you support.

During my research on this, I am seeing that this is a common post-heart surgery infection. Is this how you got this infection?

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.

Coincidentally, I got a test result today saying that a sample had M chimaera- I've previously grown MAC but have not yet been treated. It seems that most the information about this is related to outbreaks in patients after cardiac surgery from contaminated equipment. Otherwise, it does not seem to be very virulent and would be treated the same as MAC if treatment is needed for the overall lung condition.

Hi Dulwich, thank you for your response. Please do let me know how you get on from your end and I will update as well as I know more. Many thanks.

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.

Hi Ethan, thank you once again for your info. I won’t know about the meds yet until I have my next appointment with the specialist.
The links you sent from the fellow connect users are very useful personal insight. It will help me being aware and hopefully be more prepared.
Really appreciate your support. Thanks.

Gosh, I am sorry to hear you are having so many symptoms- if you have this spontaneously without cardiac surgery, that is quite unusual. Is it possible you could have avium lurking deeper in your lungs? You don't say whether you have had a bronchoscopy. Also, if you have had asthma are you on steroid inhalers on a regular basis, as that is a risk factor for mycobacterial infection and you might want to discuss with the pulmonologist as there might be other options. I will definitely let you know if I learn anything else, but for me, avium is the " main attraction". I'm also waiting to see if I have to do the big 3, but based only on CT findings as I'm totally symptom free otherwise, although am coughing up some gunk with airway clearance. If you have not tried that yet, you should also ask about doing that as sometimes people are able to clear enough out of their lungs to improve symptoms and delay treatment with meds. Let me know what happens and good luck!

@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

I did not have bronchoscopy. 3 out of my four sputum samples showed +ve for M. Chimaera although the consultant said there is no evidence of the bug or damage on my lungs in my CT scan.
Yes, I was on regular steroid inhalers since last Nov but have stopped now. Originally my gp thought it was to do with my asthma and suggested I should use the steroid inhaler regularly but I have read a study that these could trigger the non tuberculous mycobacterium.
I’m due to see a respiratory physio next week so I can learn about airway clearance.
Good to hear you are symptom free. Best of luck to you too. Thanks.

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.