Mac lung disease and the big three

Good day...I'm so sorry to hear that you are having such a terrible time with the Big Three antibiotics. I have been diagnosed with MAC for the second time and started the Antibiotics and they sapped all of my energy. I couldn't even function and was sleeping all the time and had ZERO energy. We are monitoring nodules for 3 months to see what happens. Talk to your doctor about alternative antibiotics. Thinking of you.

I was completely unable to tolerate the big 3. I was bedridden for over a week then had to stop taking them completely. I went to NJH but after consults with Dr Daley and Dr Eddy, I can only nebulize. I cannot tolerate Arycayce either.

I too am off of the Big 3 (second time) and feel better than I have in months. However, that's not to say they aren't, in some way, in my future once again unless I decide to let "nature take its course" without them. Most people tolerate the meds pretty well but some of us are unable to do so.

My last meds prescribed in March were the Azithro and Etham without the Rifampin, separated, initially, by 1 week. Three days into the Azith by itself caused me to have severe phantosmia and disguesia (smelling and tasting completely out of whack). I will be meeting with my ID doctor shortly after a CT scan and other testing, and I'm not sure what treatment will be determined at that time. I use the Aerobika alone at the advice of my ID doctor. Just know you are not alone. I hope you feel better soon.

Thank you so much for your responses. I was feeling so alone and so badly. I will be here for anyone who needs comfort and some encouraging words. Let's take it "One day at a time".
Katie ☺️