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alm2019 (@alm2019)

Tests show Mycobacterium Chimaera

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

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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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Replies to "Hi @alm2019 and welcome to Connect. That must be frightening to have this diagnosis. I wanted..."

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.

Hi Ethan,
My husband had aortic bypass surgery in 2017,We just learned that he has mycobacterium chimaera last year July 2019, he was very sick for 18months and we didn't know what was wrong with him, even when the PCP kept checking his blood until he develop an abscess in the spine. A culture was taken an he tested positive for mycobacterium chimaera. Because he was very sick with low WBC and RBC, we were told he had to start the big 5 antibiotics, and were given 4 weeks to go back into surgery for a redo, explant and implant graft and aortic mechanical valve. The procedure was done on October 3rd, after that he has has multiple surgeries as the aorta keeps bursting due to the infection. He is only 43yrs old. The cardiovascular surgeons have decided there is nothing they can do for us, infectious diseases doctors have added microfungin and bedaquiline and still the infection is resistant is there other way to treat this, his sternum has been left open due to multiple surgeries and washouts of the infection especially in his chest area. Any suggestions on how to treat this infection.

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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