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.

Thank you very much; your responses are very helpful. Dr. Huitt (National Jewish) wants to wait and see what my next culture may or may not reveal. I will keep you informed of the outcome. I permitted an ENT to put a scope down my throat to check on whether there was a lot of mucous. I am wondering if this caused it. I will never know. Bottom line: We need to say "no" to non-essential scoping. Wishing you all safety during these difficult times.

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I was diagnoised over a year ago with Microbacterium Chimera. I have never had any heart surgery, I have no idea how I caught this. Ive been on 3 antibotics for over a year and my last broncoscopy showed no growth so I have to continue for another year on the pills.

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@louieben

I was diagnoised over a year ago with Microbacterium Chimera. I have never had any heart surgery, I have no idea how I caught this. Ive been on 3 antibotics for over a year and my last broncoscopy showed no growth so I have to continue for another year on the pills.

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Good morning, and welcome to Mayo Connect and the MAC & Bronchiectasis group. We are people living with a wide variety of diseases and conditions, who support each other along the way. We try to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

Since you are new to us, I would like to ask a few questions. When you say you have had Mycobacteria Chimera for over a year, do you also have a lung disease like COPD, Asthma or Bronchiectasis? When you recently had a bronchoscopy, did you mean "no improvement" or no M. Chimera in a sputum culture?

It is typical to continue to treat mycobacteria infections for one year after the bacteria does not show in a culture, to eradicate it as much as possible?

Let me know if I can answer any questions for you.
Sue

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@sueinmn

Good morning, and welcome to Mayo Connect and the MAC & Bronchiectasis group. We are people living with a wide variety of diseases and conditions, who support each other along the way. We try to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your questions.

Since you are new to us, I would like to ask a few questions. When you say you have had Mycobacteria Chimera for over a year, do you also have a lung disease like COPD, Asthma or Bronchiectasis? When you recently had a bronchoscopy, did you mean "no improvement" or no M. Chimera in a sputum culture?

It is typical to continue to treat mycobacteria infections for one year after the bacteria does not show in a culture, to eradicate it as much as possible?

Let me know if I can answer any questions for you.
Sue

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I have no lung disease such as COPD, Asthma or Bronchiectasis. I had a cough for over 9 months and was referred to a Pulmonologis who did a Bronchoscopy, it showed Mycrobacteria Chimera, he then put me on 3 antibotics 3 x a week. I had a 2nd bronchoscopy 9 months later and it still showed growth. I had my 3rd bronchoscopy and it showed no growth. Im still on the antiboitcs for an additional year at least.

I have no idea how I caught this..I live in OK where its high humidity, I had a hot tub which I quit using.

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@louieben

I have no lung disease such as COPD, Asthma or Bronchiectasis. I had a cough for over 9 months and was referred to a Pulmonologis who did a Bronchoscopy, it showed Mycrobacteria Chimera, he then put me on 3 antibotics 3 x a week. I had a 2nd bronchoscopy 9 months later and it still showed growth. I had my 3rd bronchoscopy and it showed no growth. Im still on the antiboitcs for an additional year at least.

I have no idea how I caught this..I live in OK where its high humidity, I had a hot tub which I quit using.

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I am curious, did he make this diagnosis from looking at the bronchoscope, or did he remove some mucus and send it to the lab? Have you had imaging, either x-ray or CT to show the extent of involvement throughout the lungs?

Hot tubs are sometimes pointed to as the culprits in Mycobacteria infections, because they can expel the bacteria in the steam, which you then breathe in. But usually healthy lungs can fight them off…

Sue

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@sueinmn

I am curious, did he make this diagnosis from looking at the bronchoscope, or did he remove some mucus and send it to the lab? Have you had imaging, either x-ray or CT to show the extent of involvement throughout the lungs?

Hot tubs are sometimes pointed to as the culprits in Mycobacteria infections, because they can expel the bacteria in the steam, which you then breathe in. But usually healthy lungs can fight them off…

Sue

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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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@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

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@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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@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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