New to Mycobacterium Gordonae HELP needed

Has anyone out the had Mycobacterium Gordonae?? I understand this is rare and would like to connect with someone that has been through this. PLEASE share.

Hi @jammer you may have noticed I moved this post to your initial discussion on Mycobacterium Gordonae so that more users can find what has previously said about this disease.

While we wait for others to join this discussion, how have you been feeling lately? Any updates to give us?

I have been on three antibiotics for 6 weeks now and my energy level has gone to zero. I get tired much easier and get very little sleep. I am on Rifampin 300 mg 2x a day, Ethambutol 1000 MG 1x day and Azithromycin 500 mg 1xday. Has anyone had these problems with the meds?? I get tired really fast and find it hard to do normal everyday things that I used to do. I would love to hear from others

Hi @jammer you may have noticed I moved your post to your original thread on Mycobacterium Gordonae so that other uses can find what has previously said about the disease, and so that you can have all the information you receive in one place. Simply click VIEW & REPLY in your email notification to get to your post.

While we wait for others to join in on the conversation, did your doctor say that fatigue was one of the symptoms of these medications? Are you having other side effects in addition to that one?

Has anyone else had this experience? I have had MAC and been under treatment since July 2018, the past 3 months taking the meds daily due to persistent positive cultures and evidence of growing spots on my latest CT. Now the past two cultures, in June and September, have grown both MAC and M Gordonae. The current plan is to repeat culture and CT in December and see my ID doc then.
What questions should I be asking? Is there a doc anywhere with experience with M gordonae?

Sorry that you have this new concern. M gordonae is common in tap water- I isolated some from a faucet in NYC when I had water tested, but it does not usually cause disease unless you have a compromised immune system. It could also be a contaminant in the culture although that seems less likely if found twice in succession, but anyhow, your ongoing MAC is a greater concern and if the gordonae is truly present should respond to the same treamtnets
I expect the ID doctor will be more focused on whether your MAC is showing any response to the daily meds and might want to tweak treatment. If you have not already had drug sensitivity testing on your MAC strain or found out the exact species, this might be a good time to do it to make informed treatment decisions

@sueinmn Hi Sue. Man, it stinks to learn that other 'bugs' take up residence in our lungs. It is not uncommon to pick up additional infections from various bacterias when you have mac and/or bronchiectasis. The same issue at hand that allowed mac to become an infection; holds true for other mycobacterias. I caught pseudomonas while into my third year on antibiotics. Fortunately, switching one of my antibiotics out and adding tobramycin got rid of it in 30 days. Mind you, I am still on maintenance meds to keep it away. That will be a good discussion for your I.D. dr. on whether it needs to be treated. Please keep me posted on what treatment path, if any; they put you on.

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?

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