Just came across this and wonder what the Emory doctor has suggested. Many Thanks

I was diagnosed with mac bronchiectasis nine years ago when I was seventy-three. I chose not to go on the antibiotics. I had five very good years before really feeling the effects of the disease. Only one of the antibiotics, azithromiazine , responded to testing. I was on it for five months and did feel better, gained a little weight and had better energy. However, I was losing hearing in my left ear. My pulmonary doctor took me off it immediately as she judged it was a side effect of the antibiotic. I think I made a good choice for my life. I know that some folks on this site encourage hanging in and going through the side effects but for some they are quite damaging. It's an individual choice. Good luck Flib

Welcome back, @flib. You're so right that treatment decision making is an individual choice that each person has to make with their health care team. Many factors play a role. I'm glad that you and your doctor investigated the cause of your hearing loss and that discontinuing the antibiotics was right for you.

We hadn't heard from you for a while. How are you doing these days?

My doctor recently took me off my meds for a couple of weeks to help me get my strength back. After labs he will put me back on them one at a time. And will change method of taking them. Thinks the rifampin is the culprit. I'm not going to live like this for the next year. I have always been active and this weakness and gastro issues are debilitating.

I have wrestled with quality vs quantity of life frequently! I get it!

Mary, I was there for such a small time. I promised when my husband was in Vietnam that I would never ever say : "I know how you feel." People who never had a spouse in Vietnam didn't know how I felt. I wish I could just say hold on but that seems so barbaric. You are going through such a physical and emotional crisis. Is there anyone who can work with you on the emotional side of this disease? People who don't have this, try at times but they can be out in left field. I described my limited time as being in emotional hell and resented people who told me to shape up and "think of others." This group knows what that hell is and I truly wish you get the help and support you need right now.

I agree, rifampin I think is the one that seems the worse. I had side effects with rifabutin that were horrible. I was switched to rifampin and they are not as bad but I think I do get symptoms of aching in the legs, weakness and some muscle cramping and the fatigue. I still am stunned that there has been such slow progress in research in this area for better treatment

You hit it right on the head for me Irene. Many thanks. Just learned the University of Michigan has no support group. do I feel lucky I came upon this group.

Did anyone ever see The Doctor? It was good to see doctors like John Hurt play the real life doctor who went through this trauma and understand finally what his patients experienced. You laugh, you cry, you are sad, you are happy.................................it is by far one of my favorite films. Life can feel so darn unfair. Like our group, the connections of patients made me want to scream out and cry. I had just had brain surgery and more were concerned 25 years ago that I covered my huge scar than helping me.

@macjane....a student nurse that I had years ago suggested that movie with William Hurt was best she had ever seen....since I was retiring....I had time to watch it....agree....it was awesome....wish I could have had every student nurse watch it!
I loved at end when Hurt had medical students give each other enemas to see what it was like. Tdrell