MAC Big Three Side Effects

Very good analysis. I do walk with you in that if we somehow could unite, such as cancer groups (which I am a cancer survivor as well; oddly two years before my MAC/NTM diagnosis). We could be loud and proud to try to get something for the next generation. I've done my part in the cancer thing with giving major blood for genetics research since all three of us sisters had it yet not our mom strangely. I am trying to give back by reaching out to the few I know and share knowledge. Until it's out in the open in a big way though, not much progress will be made. There are strong support groups, but no empowering groups to help the cause of first awareness and next research. I've shared with women along the way that I felt could possibly have this. I would say the main reaction is denial (I get it; I was there) and usually they do nothing about it. Not even my own sisters will be tested for it. "If we don't test, we don't have it." I totally get it. They're doing fine, so why get tested. I do believe there are many millions more out there. It's showing up in third world countries more as well as our more supposedly medically advanced countries. I just can't see the current treatments being very helpful in third world countries. Most people can't do this regime to stay healthy as it is in this country. It's staggering to do the nebulizing treatments daily and then if one has to go on the 3 drugs once again and sometimes again and again. It seems that there needs to be an immunological solution. Ideas floating. Action lacking. Let me know if you think of anything! Thanks for being part of the group and sharing your ideas.

Thank you, I appreciate your reply so much! Yes, it’s so hard(impossible) to mobilize any sort of movement. I had a reply from the Mayo Mentor
”sueinmn” that attached the best article I have read to date. If I was smarter, I’d reattach it here but I can’t get it to work from my phone. Anyway, if you can access it, it’s long but a great read. I feel, as Sue stated, we are at the back of the line-especially as I believe women of our “age” are somewhat invisible in many things these days.
I’m not holding my
breath that things will change in the MAC world and just hope that everyone’s individual journey gets easier as time goes on. It’s very discouraging that there are so many of us but hopefully we can appreciate not being alone.

@equanimous You have found a great place here on Mayo Connect to help educate yourself. My personal experience with bronchiectasis and MAC involved 2 years of a chronic productive cough and a LOT of doctor visits and tests before finally being diagnosed. There are a lot of GPs and even Pulmonologists that simply are not familiar and up to date with our condition. If your Pulmonologist suggests waiting on the antibiotics, I would certainly go with that. The most important thing IMHO is for you to perform airway clearance (=lung hygiene) every day for the rest of your life. For me that includes nebbing with 7% saline (#1 most important) and using the Aerobika There are several youtube videos that will be very helpful, one of my favorites is this one https://www.youtube.com/watch?v=L-EHohMe7II One last piece of advise is to do all the other things to help make you healthier overall to include exercise, a healthy diet, stress reduction etc. Good luck yo you. Bill

I’d really love to read that! We need a RUN FOR OUR LUNGS to help the next generation especially with our medical care being greatly reduced. Don’t have it in me to organize but I’d attend. Would ge a first I think.

I think if you access the Mayo mentor’s feed, it may be her last post and she links the article. Try looking for: @sueinmn on here as a user name. The article was written in 2020.
A “lung run” would be great for many reasons. One day MAC may fall under the umbrella of all the other lung diseases, especially as it’s basically a variation of TB.
It’s all exhausting, expensive, frustrating and
discouraging, but you can only keep going.

I have recently been doing a water aerobics class and read about MAC being chlorine resistant. I wrote my dr to ask if I should d/c pool activity. She said if the pool is well maintained it is okay. I just want to be sure....Does anyone know, if you are already diagnosed with MAC, can going to a pool make it worse?

I would suggest everyone who is taking the ‘big’ 3 for MAC to google each one. I have been on the big 3 for two years and just now looked each up paying close attention to the side effects. I have been experiencing severe dizziness for well over a year - I even passed out once. I mentioned it to my primary care doctor but a reason was never found. I knew Ethambutol affects our eyesight and one affects our hearing (mine is getting very bad) but ALL 3 produce ‘severe dizziness’! I’m talking about getting out of my chair and walking 6 feet when I have to quickly sit down to avoid hitting the floor. In fact I did pass out once. I have mentioned the dizziness to my primary care doctor - that it negatively affects my life more than anything. When I looked into the side effects for each med ‘severe dizziness on each jumped out at me. At least now I know why!

Sorry you're having so many issues. I always check out the possible side effects of meds - there isn't one that doesn't have any. The one's that I read were possible weren't more severe than the symptoms of the disease. I had baseline testing done on vision and hearing. I haven't had any issues on the big 3 - Only improvement of the disease symptoms. I think everyone is just different on what they can tolerate

I have been on the big 3 antibiotics now for 8 months, which in the beginning I was very hesitant on starting keeping in mind that I am 76 years old. I have been somewhat lucky that I have mostly only had nausea often and diarrhea which is mostly gone now. However, I went to my vitroretinal specialist this past week and fail my second visual field test. Because of that and I am susceptible to getting glaucoma as my mother had it and went blind she took me off rhe ethambutol as that can cause glaucoma and eye problems. I checked with my infection disease Dr and he was OK with it. This is not that common but always something to be aware of. It is scary to think about the long road ahead on the antibiotics, but it is the best way to go unfortunately. It is much better then having to take the IV course.