Diagnosed with MAC but not being treated

I know this is an old post and I don't know if you're still on here but I just couldn't believe that you had an 8.5 cm cavity! I have a 3.2 CM cavity and I thought that was big! Anyway if you're still on here can you let me know how you're doing? Thank you!

Hello. Thank you for reaching out. Yes....my cavity actually got to a little over 9 cm big. I've been on the Big 3 antibiotic treatment (Ethambutol, Azithromycin and Rifabutin) for 5 years now. I also started the inhaled Amikacin in February 2019 and it has been a game changer. My cavity has shrunk to 4.5 cm with the treatment. I also nebulize Levalbuterol then 3% Saline Solution that is awesome for "lung clearance".
What treatments are you on?

Thank you so much for getting back to me! You really brighten my day because I've been really worried about this cavity. I actually just found out I had Mac about a week ago. I see infectious diseases tomorrow to see what the game plan is but it's a little complicated because I also have a cancer on my intestine that is very aggressive. I'm supposed to have surgery this weekend, saturday. So I'm hoping they won't stop it or anything. I don't have symptoms of the Mac, it's very odd! Maybe some trouble breathing once in awhile like shortness of breath. But nothing major yet, I hope it stays that way! My cavity is in my upper right lung. And then the CT Scan they did two months ago showed some nodules around that cavity, and those got better with my last CT scan a couple weeks ago but a bunch of new nodules formed in my middle long and lower long. I don't know if that is from the Klebsiella pneumonia they also discovered when I had the the the broncoscopy, or if it's something more terrifying. They don't believe there's any cancer, they did too many biopsies when they did that even on some lymph nodes. This is all very scary to me so when I saw your post about having a cavity that size I thought, well maybe there's some hope for me then! I've gotten a lot of emails from people on here though that really have some good outcomes and I'm hoping for that for me also. That is so fantastic about the shrinkage of your cavity! I mean this is fantastic news. I am so happy for you. I am hoping when they do my surgery this weekend that they get all the cancer out, they believe they caught it early but on an MRI it is saying that there is a suspicious area where it may have come through the intestine wall, if that's the case I will have to have chemo and that's going to lower my immune system which is going to screw getting treatment with the Mac so this is a nightmare for me!! 😨 If you have any other information you can share with me that would be great! I really appreciate you letting me know about your cavity. I wasn't sure if you were still on here or not but I was so glad to read that and I am hoping they put me on something that's going to help close it. I've read that sometimes they can collapse. I don't know if there's anything I can do to encourage the collapsing of it but I would do it if there is! I hope you have a great day. Thank you so much, and wish me luck tomorrow with infectious diseases!!
Angela

My pulmonologist is not treating my MAC either because he said I don't have any symptoms - no night sweats, no weight loss, and only mild fatigue (mostly due to age and COPD). In 2014-15, I was on the 3 antibiotics regimen for 15-18 months, after which I was pronounced "cured". No signs of MAC on screening and scope results.
Now old MAC he is back! But I told my pulmo I'm done with the scopes and the long term antibiotics, which I fear contributed to my kidney disease. He is OK with that. My infection is mild but scattered so removing lung tissue is not an option. So we're treating my COPD with inhaled Stiolto. I use the saline nebs every other day followed by airway clearance with Air Physio. I don't cough up much mucus and my lungs sound clear. The dr said to continue my good lung hygiene - daily yoga exercises (at home) with deep breathing and a lot of walking outdoors, weather permitting. And be sensible when gardening, avoid mulch, bird droppings - best to wear a mask and shower and shampoo afterwards.
Good luck. I'm told it's a slow-growing infection.

I was just diagnosed with Mac and bronchiectasis. What happens if I don’t take the antibiotic regimen? I am 76

Yes, my dr. wants to wait until my symptoms become debilitating. I am going for CT scans every 6 months and providing a sputum sample. I have bronchiectasis and MAC. As for me, I am scared of the big 3 and am in favor of waiting. I am doing vest compression 2x per day and my dr. just prescribed acetylcysteine 100 mg/mL (10 %) solution that I will use in my nebulizer 2 or 3x per day. Thus far my symptoms are a cough and slight fatigue. Good luck to you and thank goodness for this support group!

I'm glad to see you are getting some good answers from your doc. Are you also using 7% saline nebs? There is good evidence that it can help keep the MAC germs in check, or perhaps even reduce them.

I was still MAC positive in 2019 when I stopped the antibiotics, and 7% saline plus airway clearance (Aerobika and Huff Coughing) have kept me healthy ever since. It seems from what I have been reading here recently that more docs are watching and waiting before starting the antibiotics if symptoms are not severe.
Sue

Alleycatcate... Can you share with us what proactive measures you do take that as kept things under control for you all this time thanks Bon

I am 76 as well and have been on the big 3 since Aug of 2022. I had side effects of nausea, diarrea, insomnia, and now failed my second field view eye test which my eye specialists took me off ethambutal immediately and my infectious disease dr concurred. With this said I am glad I took the antibiotics as my last cultures were negative and the current ones look good so far. I was scared to start the meds but glad I did. Everyone is different but the outcome is worth it. Good luck in your decision whatever it is as there are things to help you cope with the side effects and usually not everyone gets them all or maybe none.

Why would you wait until your symptoms become debilitating? By then you will be older and less able to fight it. Just food for thought. ( irene5)