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alm2019 (@alm2019)

Tests show Mycobacterium Chimaera

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

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Gosh, I am sorry to hear you are having so many symptoms- if you have this spontaneously without cardiac surgery, that is quite unusual. Is it possible you could have avium lurking deeper in your lungs? You don't say whether you have had a bronchoscopy. Also, if you have had asthma are you on steroid inhalers on a regular basis, as that is a risk factor for mycobacterial infection and you might want to discuss with the pulmonologist as there might be other options. I will definitely let you know if I learn anything else, but for me, avium is the " main attraction". I'm also waiting to see if I have to do the big 3, but based only on CT findings as I'm totally symptom free otherwise, although am coughing up some gunk with airway clearance. If you have not tried that yet, you should also ask about doing that as sometimes people are able to clear enough out of their lungs to improve symptoms and delay treatment with meds. Let me know what happens and good luck!

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Replies to "Gosh, I am sorry to hear you are having so many symptoms- if you have this..."

I did not have bronchoscopy. 3 out of my four sputum samples showed +ve for M. Chimaera although the consultant said there is no evidence of the bug or damage on my lungs in my CT scan.
Yes, I was on regular steroid inhalers since last Nov but have stopped now. Originally my gp thought it was to do with my asthma and suggested I should use the steroid inhaler regularly but I have read a study that these could trigger the non tuberculous mycobacterium.
I’m due to see a respiratory physio next week so I can learn about airway clearance.
Good to hear you are symptom free. Best of luck to you too. Thanks.

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