MAC Big Three Side Effects

Not so much immunity issues, it’s because of our identical body frames. We fit the “classic” description of middle aged, tall, thin female with kyphosis and scoliosis who are most prone to get MAC. She was ahead of me in dx and tx and got eye problems from ethambutol. So my doctor stopped my tx at 6 months since being identical twins, I would get it too. After 3 years I wasn’t doing well, so he started me on them again with the goal of one year. Probably tmi, but it’s nice having this site where we all understand what each us us are going through and can get support.

Hi, I have been on the 3 big ones for mac since August of 2022. Last week I failed my second field eye test and my eye specialist took me immediately off ethambural. The next day I saw my infectious disease Dr and he concurred. I have heard that this is a rare side effect, but one you should be aware of it if you have eye problems. I haven't had the fatigue problem but do have the nausea and have to lay down for 20+ minutes when it is bad. Fortunately I am retired as I am 76 and don't have to deal with fitting work into my schedule anymore. It did take 3 years for them to diagnose me and a loss of 100 lbs. Once I found the right Dr's things got on track and last month I had my first negative cultures which is good since I have tested possitive for 4 different bacterias. I still have to take the meds for another year with NO positive cultures or I start all over!
Good luck and I am hoping you get good results.

I have bronchiectasis. MAC was discovered about a year ago after my Primary Care dr ordered a chest x ray. Most recently my CT scan showed mucus plugging. I am now on compression vest 2x per day. My pulmonologist wants to hold off on big 3 and is taking the wait and see approach. I have 3 friends who have lost hearing due to antibiotics. I am a musician and this scares the heck out of me! I am grateful to have found this group.

I was just diagnosed with MAI and my pulmonologist hasn’t told me to begin this but would you do so? I’ve also read to take short, mild showers and that is going to really suck! but should I do this also? Thank you so much Sue. You were the 1st to reply to me and I value your opinion.

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 understand the mycobacteria is everywhere and in everything all of us are exposed to on a daily basis. Maybe it’s a moot point after you are already infected, but research on particulars, ie: are there clusters in specific areas, are there more verified cases in one state as compared to others, is there a way to negate reinfection-short of moving to another area, etc., these things could affect how and where you live. Should you use protection (such as a mask and gloves) when working outside, should your water be tested(as I’ve read some bacteria can thrive in certain types of water pipes), and followups on peoples’ health who have undergone treatment.
I did not join this site to express or defend my thoughts on research and it’s funding of MAC, and there is so much unknown about it, but I do believe having as much knowledge as possible is important and that is evidenced here with all of the great information shared among the many participants.

Other people who are susceptible (besides those with Bronchiectasis) include people with other lung diseases such as Cystic Fibrosis and Emphysema, people with compromised immune systems, and in some cases, people who have had lung surgery.

Airway clearance helps eject the mucus (and the germs it contains) from our compromised lungs to prevent colonies from growing. Normal lungs are able to do this with routine coughing and throat clearing. For me, it is the most important part of staying healthy.
Sue

Welcome to Mayo Connect. It seems overwhelming when we first get this diagnosis, but trust me things do get better over time.
I'm going to try to answer several of your questions, but would invite @poodledoc, @irenea8 and other "veterans" to weigh in with their experiences.

First, the vest should be a help with airway clearance, but if you are trying to avoid the antibiotics, I would suggest that you also ask about nebulizing 7% saline, which has the dual advantage of thinning mucus and potentially suppressing the bacteria growth. Here is an article to introduce you to it:https://smartvest.com/blog/airway-clearance-techniques-for-bronchiectasis-and-copd/

Second, most of us were told that outdoor pools are safe. Chlorine does not kill MAC so it lingers in the copious water vapors above an indoor pool or any hotub, so these are to be avoided.

Finally, not everyone experiences hearing loss from the drugs - I got my a baseline hearing test, then was tested by an audiologist every 3 months to be sure, since I already have issues with tinnitus and age-related loss. So if you need to start, just be hypervigilant.

If you spend some time reading other discussions in this support group, you will find the answers to many of your questions.
Sue

I was never told that pools are a problem. They did say never on saunas, steam baths, jacuzzis. Saunas are apparently germ baths for anyone not just us MAC people. Hope that swimming is ok, because it’s such great exercise for lungs etc.