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 group.

@alm2019 – I'm a little late to the party here, but take a look at this video from 2016 from a NTM conference.
https://youtu.be/U1ZmJAQlgLw
he gist of it is that it seems what is identified as intracellulare may be chimaera, not all testing differentiates between the bugs well. Chimaera is another of the slow-growing NTM, so the treatment of the two is similar, just be sure sensitivity testing has been done. To see all the videos from that conference, go to https://www.nationaljewish.org/ntmvideos2016 .

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@sueinmn

@alm2019 – I'm a little late to the party here, but take a look at this video from 2016 from a NTM conference.
https://youtu.be/U1ZmJAQlgLw
he gist of it is that it seems what is identified as intracellulare may be chimaera, not all testing differentiates between the bugs well. Chimaera is another of the slow-growing NTM, so the treatment of the two is similar, just be sure sensitivity testing has been done. To see all the videos from that conference, go to https://www.nationaljewish.org/ntmvideos2016 .

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@sueinmn – thank you so much for sharing the video links and for your kind response. I’m learning so much more from these videos especially the preventative advice on NTM.
My CT scan has not shown any bronchiectasis yet but I’m still coughing with phlegm and I have repeat +ve sputum cultures for Chimaera.
I’m doing airways clearance and my consultant is not rushing into the antibiotics treatments.
It is so good to learn about this specific subject from many of you on this site. I live in London and although there are lots of info on bronchiectasis and COPDs etc. on the UK site I could not find many talking about specific mycobacterium infections.
Hoping you are all having good days. Best wishes and Many thanks.

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I was diagnosed with Mycobacterium Chimaera about 5 months ago. I had open heart surgery 4 years ago to replace my aortic valve. There was a heating/cooling unit in my surgery room that was spewing out the bacteria and this is how I got it. The bacteria laid dormant in my body for 3 and 1/2 years. The M. Chimaera is located on my heart, in my spine and on my liver. My team of doctors put me on the "big 3" antibiotics about 3 months ago. I was recently put on an antibiotic by the name of Amikacin which is administered through a port. I will be on this for 3 weeks prior and 3 weeks after my heart valve replacement surgery. The thought now is to remove the infective valve ASAP and then hope the antibiotics keep it from growing on the new valve. My surgery is scheduled for Oct. 31st.

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@dongreiner1957

I was diagnosed with Mycobacterium Chimaera about 5 months ago. I had open heart surgery 4 years ago to replace my aortic valve. There was a heating/cooling unit in my surgery room that was spewing out the bacteria and this is how I got it. The bacteria laid dormant in my body for 3 and 1/2 years. The M. Chimaera is located on my heart, in my spine and on my liver. My team of doctors put me on the "big 3" antibiotics about 3 months ago. I was recently put on an antibiotic by the name of Amikacin which is administered through a port. I will be on this for 3 weeks prior and 3 weeks after my heart valve replacement surgery. The thought now is to remove the infective valve ASAP and then hope the antibiotics keep it from growing on the new valve. My surgery is scheduled for Oct. 31st.

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@dongreiner1957 Hi there! I was just reading your post and assume you have been through your surgery for a heart valve replacement already. How are you doing?

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@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 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.

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@dongreiner1957

I was diagnosed with Mycobacterium Chimaera about 5 months ago. I had open heart surgery 4 years ago to replace my aortic valve. There was a heating/cooling unit in my surgery room that was spewing out the bacteria and this is how I got it. The bacteria laid dormant in my body for 3 and 1/2 years. The M. Chimaera is located on my heart, in my spine and on my liver. My team of doctors put me on the "big 3" antibiotics about 3 months ago. I was recently put on an antibiotic by the name of Amikacin which is administered through a port. I will be on this for 3 weeks prior and 3 weeks after my heart valve replacement surgery. The thought now is to remove the infective valve ASAP and then hope the antibiotics keep it from growing on the new valve. My surgery is scheduled for Oct. 31st.

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Hi@dongriener
I hope all is well with you, I want to know how your surgery went, my husband had his surgery October 3rd 2019, he is still critical and has been in CV ICU since.
Let me know
Thanks

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@mulenga021

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.

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@mulenga021 Oh my gosh, your husband has been through a lot already! That has to be tough. Are you confident that he is at the best medical facility to deal with this?

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@windwalker

@mulenga021 Oh my gosh, your husband has been through a lot already! That has to be tough. Are you confident that he is at the best medical facility to deal with this?

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I don't think he is at the best medical facility, I really don't have confidence in the ID doctors but the have one of the best cardiovascular in the country. The combination of the two has been a challenge since they don't know how to treat him and have left as with just pain management and antibiotics which we were already doing at home. He has problems with the infection in the chest area not being treated and so the aorta keeps bursting. He is currently bleeding internally with no medical intervention. Do you know of any one who can help us?
Thanks for your response

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@128128terry11t

Few years ago sputum culture showed MAI. Was on Big 3 for a couple of years (at end clofazamine substituted for ethambutol due to vision problems). Last culture showed 50 colonies of chimaera. Wondering how many of you had chimaera show up; were you treated; if so, what and for how long? Anyone simply have it go away with just airway clearance techniques? Had 5 colonies of m.abscessus show on another culture. Anyone with that type of experience as well?

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@128128terry11t Any symptoms? I grew M chimaera & M gordonae at various times, but not M abscessus as far as I know. Next sample did not show either one, but I was on antibiotics at the time, so don't know if that kicked it, or it was just what my pulmo calls a tainted sample since both are present everywhere along with M. intracellulare. I have been antibiotic-free, but not MAC-free for 6 months & still doing fine with airway clearance – pulmo is happy with status quo.

Does your doc have any plan to repeat tests soon?
Sue

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@128128terry11t

Few years ago sputum culture showed MAI. Was on Big 3 for a couple of years (at end clofazamine substituted for ethambutol due to vision problems). Last culture showed 50 colonies of chimaera. Wondering how many of you had chimaera show up; were you treated; if so, what and for how long? Anyone simply have it go away with just airway clearance techniques? Had 5 colonies of m.abscessus show on another culture. Anyone with that type of experience as well?

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@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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Few years ago sputum culture showed MAI. Was on Big 3 for a couple of years (at end clofazamine substituted for ethambutol due to vision problems). Last culture showed 50 colonies of chimaera. Wondering how many of you had chimaera show up; were you treated; if so, what and for how long? Anyone simply have it go away with just airway clearance techniques? Had 5 colonies of m.abscessus show on another culture. Anyone with that type of experience as well?

REPLY
@128128terry11t

Few years ago sputum culture showed MAI. Was on Big 3 for a couple of years (at end clofazamine substituted for ethambutol due to vision problems). Last culture showed 50 colonies of chimaera. Wondering how many of you had chimaera show up; were you treated; if so, what and for how long? Anyone simply have it go away with just airway clearance techniques? Had 5 colonies of m.abscessus show on another culture. Anyone with that type of experience as well?

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@128128terry11t @heathert and @sueinmn I moved your discussion about M chimaera to this existing discussion where @alm2019 @dulwich @megan123 @dongreiner1957 @mulenga021 are also talking about chimaera.

According to this 2018 article Mycobacterium Chimaera: A Rare Presentation – NCBI: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6080730/
– "Mycobacterium chimaera is an indolent nontuberculous mycobacterium which is abundant in soil, dust, and water. … it has been recognized as an emerging opportunistic threat to patients undergoing coronary bypass surgery and open heart procedures requiring extracorporeal devices."
– "Treatment of M. chimaera is the same as other Mycobacterium avium complex infections, including two to three antimicrobials for at least 12 months and often up to 18 months. Commonly used first-line drugs include macrolides, ethambutol, and rifamycins."

You may also be interested in this discussion on Connect:
Just found out I have mycobacterium abscessus! https://connect.mayoclinic.org/discussion/just-found-out-i-have-mycobacteria-adscessus/

Terry, have your doctors suggested going back on antibiotics for a period of time or using other treatment options?

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