← Return to New to Forum & new to treatment what 2 expect

Discussion
kellykvent avatar

New to Forum & new to treatment what 2 expect

MAC & Bronchiectasis | Last Active: Mar 29, 2025 | Replies (5)

Comment receiving replies
Profile picture for irene5 Irene Estes @irene5

Oh dear! @kellykvent welcome to this forum. I’m so glad you found us now! If the doctor who has been treating you is your pcp that’s probably why you weren’t diagnosed. I kept complaining too and it wasn’t until a family member who is an obgyn ordered a CT scan that my MAC was seen. My PCP thought I was depressed because I retired even though I told her I retired only because I didn’t feel well. With that said you need two things if you don’t already have them: a pulmonologist familiar with MAC and an infectious disease doctor who is familiar with MAC. Everyone’s journey is different. Some people have trouble taking the Big3 while others have no serious side effects. See if you can go back in this forum to posts about time of day to take them and foods to eat that might help and pro/prebiotics. Sue on this forum is a wealth of great info along with many others. It has been suggested research wise that you may not need rifampin so if you can’t tolerate that one that might be ok to not take depending on what your doctor suggests. As far as hearing loss everyone is different. I was more concerned about my eyes from ethambutol but that was not a concern. Get a baseline eye exam first. Azithromycin and/or Clarithromycin can be harsh but you can swap one out for the other. I had some ringing in my ears from the azithromycin but no hearing loss and was switched to clarithromycin. You might get stomach upset from these meds - hence pro/prebiotics are recommended and kephir. Seriously, try to go back and read other earlier posts. MAC is slow going depending on whether you have cavitiory MAC or nodular MAC. You should know this information! Only you can advocate for yourself! What I mean by that is it is your body so speak up - which it sounds like you did for quite some time. If you aren’t satisfied with your doctors look into new ones and get a CD of your CT scan to take with you. It sounds like you have a lot to deal with now since you are on oxygen. Hopefully you have a person to help you as you may tire more easily. A great thing about this forum is there are so many knowledgeable people who are here to provide information and support. Everyone’s journey is different, but we have all been on it or are in the midst of it so you are so not alone! Wishing you well. Irene5

Jump to this post


Replies to "Oh dear! @kellykvent welcome to this forum. I’m so glad you found us now! If the..."

Slow growing not slow going - haven’t had enough coffee yet! Irene5