← Return to Now Mycobacteria Gordonae in my culture too

Discussion
Sue, Volunteer Mentor (@sueinmn)

Now Mycobacteria Gordonae in my culture too

MAC & Bronchiectasis | Last Active: Nov 27, 2019 | Replies (4)

Comment receiving replies
@sueinmn

Thanks for the responses. Yes, they have identified exact species and done sensitivity testing – switched from clarithromycin to azithromycin many months ago because it showed better response. Doc is trying to hold tobramycin "in reserve" but we talked this week and he is getting closer to trying it if next CT doesn't show improvement and next sputum samples are still positive. I am truly getting frustrated, so it's great to hear from people here. I took a 30 minute medium paced walk this morning and was pleased that I could talk to my friend as we walked – 3 months ago that was impossible. Does anyone have a feeling for how much of my fatigue is MAC, and how much is these infernal antibiotics?

Jump to this post


Replies to "Thanks for the responses. Yes, they have identified exact species and done sensitivity testing - switched..."

Hi Sue @sueinmn, good luck and keep going with all this. Yes the fatigue is ridiculous. I'm sure it's from both the MAC disease — including bronchiectasis issues — and from the infernal TB antibiotics too. And many of the TB drugs interact with what we already take as well, for instance blood pressure meds or thyroid meds etc.
Some TB drugs cause more fatigue than others. For example, I had to stop Rifampin and now I'm on Clofazimine instead. I didn't think I could get any more tired than when I was on Rifampin, but I am — and I often feel weak as well as tired. It takes months to sort all the new interactions out.
But on the plus side, I really congratulate you on your walking — good on you! All the best, Annie

  Request Appointment