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.

Jennifer | @megan123 | Jun 14, 2019
In reply to @ethanmcconkey "Hi @alm2019 that must be very confusing. In regards to your question on the big 3,..." + (show)
@ethanmcconkey

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.

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Hi Dulwitch...I think before they start u on the big 3 they have to do 3 sputum samples to confirm a proper diagnosis..my sputum recently showed another bacteria same family as yours, starting with F...they r doing more sputum to grow culture again...they will only put u in the big 3 with s confirmed diagnosis..sometimes bacteria shows up randomly and disappears...I’ve been on big 3 for 14 months..quite tolerable👍🏼

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1 reply
dulwich | @dulwich | Jun 20, 2019
In reply to @megan123 "Hi Dulwitch...I think before they start u on the big 3 they have to do 3..." + (show)
@megan123

Hi Dulwitch...I think before they start u on the big 3 they have to do 3 sputum samples to confirm a proper diagnosis..my sputum recently showed another bacteria same family as yours, starting with F...they r doing more sputum to grow culture again...they will only put u in the big 3 with s confirmed diagnosis..sometimes bacteria shows up randomly and disappears...I’ve been on big 3 for 14 months..quite tolerable👍🏼

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Maybe fortuitum? Anyhow, glad you a tolerating the meds well

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 4, 2019

@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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1 reply
alm2019 | @alm2019 | Jul 4, 2019
In reply to @sueinmn "@alm2019 - I'm a little late to the party here, but take a look at this..." + (show)
@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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dongreiner1957 | @dongreiner1957 | Oct 23, 2019

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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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 1, 2019
In reply to @dongreiner1957 "I was diagnosed with Mycobacterium Chimaera about 5 months ago. I had open heart surgery 4..." + (show)
@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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mulenga021 | @mulenga021 | Jan 17, 2020
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 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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1 reply
mulenga021 | @mulenga021 | Jan 17, 2020
In reply to @dongreiner1957 "I was diagnosed with Mycobacterium Chimaera about 5 months ago. I had open heart surgery 4..." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 2020
In reply to @mulenga021 "Hi Ethan, My husband had aortic bypass surgery in 2017,We just learned that he has mycobacterium..." + (show)
@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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1 reply
mulenga021 | @mulenga021 | Jan 27, 2020
In reply to @windwalker "@mulenga021 Oh my gosh, your husband has been through a lot already! That has to be..." + (show)
@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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