Non tuberculous mycobacterium

[Alm2019]

Hi, hope you are all having a good and well day!

Has anyone here had the non-tuberculous mycobacterium infection? I’m just hoping you might share your experience on treatments, side effects of long term antibiotics or how you manage the problems and treatments? Many thanks.

[Neville33]

hi there...I to have MAC and intercellular...I have been on the big 3 for 14 months with minimal side effects...everyone handles it differently...not that bad

[Alm2019 in reply to Neville33]

Hi, thank you for your reply.

Glad to hear that it’s possible to have this with minimal side effects.

All the best to you for continued successful treatment.

Please let me know how you get on in the near future. Many many thanks.

[Alm2019 in reply to Neville33]

Hi, I forgot to ask you in my last reply.

Did your symptoms stop once you started the antibiotics treatment or after a period of time?

I have symptoms of persistent cough, phlegm, fatigue, sometimes sweats and weight loss. I have Mycobacterium Chimaera. I’m seeing my consultant end of this month and she has mentioned I may have to have 3 antibiotics for up to 18 months.

I can’t tell you how glad I am talking to someone with real experience. Thank you.

[Neville33 in reply to Alm2019]

I had the exact same symptoms...they watched me for awhile before starting the meds....were some side effects the first two months ie headaches, fatigue, but went away...fatigues remains but nothing a strong cup of coffee can't fix if u need to do something social...just missing sure u get eyes checked, hearing, blood wrk to monitor kidneys...don't be alarmed, just stay on top of things✌️👍

[Neville33 in reply to Neville33]

Also the symptoms went away within a month

[Alm2019 in reply to Neville33]

Thanks again. I will definitely have to be careful with my eyes as I already had past problems and surgeries.

Good to know that your symptoms went away so soon after treatment.