Tests show Mycobacterium Chimaera

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👍🏼

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

@alm2019 - I'm a little late to the party here, but take a look at this video from 2016 from a NTM conference.

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 .

@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.

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.

@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?

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@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

@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?

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