1. < MAC & Bronchiectasis

Tests show Mycobacterium Chimaera

Posted by alm2019 @alm2019, Jun 12, 2019

Hi, I’m new on this site and have recently found that my tests show +ve for Mycobacterium Chimaera. Has anyone here had the same bug infection? Just wondering if you might share your experience, treatments and the management of these.
Thank you for a good forum and I enjoy the chat and good tips.
Hope you are all keeping well and staying on top of things. Thanks.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 22, 2021
In reply to @louieben "He took several samples and some took 4-6 weeks to grow. I've had x-ray and ct..." + (show)
@louieben

He took several samples and some took 4-6 weeks to grow. I've had x-ray and ct scans also. I have some scarring of my lungs but very minimal.

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Thanks for sharing - it sounds like your doc is following the standard protocol - now that he is not seeing infection, treat for one more year. Mycobacteria grow very slowly, hide very well in our lungs, and are hard to eradicate, so if we can tolerate it the choice is to treat.
Sue

REPLY
reillypp | @reillypp | Dec 26, 2021
In reply to @heathert "@sueinmn That is great to know you had those bugs one month then not the next,..." + (show)
@heathert

@sueinmn That is great to know you had those bugs one month then not the next, I just had a gordonae show up but my Dr wasnt worried, hopefully it goes.

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Do you not get treated for gondonae? I was just diagnosed, ID i think i was his first patient gave me big 3,,NJH says not to treat, im scared of both

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smileygirl47 | @smileygirl47 | Mar 13, 2022
In reply to @ethanmcconkey "Hi @alm2019 and welcome to Connect. That must be frightening to have this diagnosis. I wanted..." + (show)
@ethanmcconkey

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?

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Hi, I'm new on this site and don't know if I should be on the MAC/Bronchtectasis or the M. Chimaera site. My open heart surgery was 28 months ago and just two month's ago a cyst appeared on the surgical sternum site. I was immediately thrown into the crazy world of "fungal infection"; many strong antibiotics; more surgery; side effects and long-term treatment. As you all know, very overwhelming. I am seeking to connect with others who have, or are, experiencing this journey. Did you find anything to relieve your mind regarding whether all this would ever be over? I usually do not take a negative approach on anything. This infection, however, has me baffled. I want to be pro-active in my recovery. The approach of the doctor's seems very daunting. Also, I would like to hear other people's reaction to the drug Clofaximine. Thanks.

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