Anyone doing "watchful waiting" with ACTs but no antibiotics?

Hi. I was just diagnosed with mild BE. Did a sputum test last year for MAC it was negative but new pulmanologist I saw at medical research hospital wants to do another sputum test. I guess he suspects MAC. I'm really worried. Been reading about the treatment and wait and see as well. I use aerobika and he just prescribed adding the 7% sodium solution to nebulizer. Just got the prescription. Will start today. No real symptoms except mucus clearing (a little) but can get a lot more if get sick. Reoccurring pneumonia since 2020 (4x's) but didn't get in February when I had flu A or in May with a bad chest cold. Praise the Lord. Most recent (June) showed pretty good bloodwork with high sensitivity C-reactive protein at .32 I was amazed at that level. As high as 65 when I first tested a year ago. I also see a holistic/integrative physician clinic. That has helped clean up my gut. Been through mold detox through the clinic as I tested for a mold toxin (aspergillus) had house treated, cleaned the vents, put on a uv lamp on hvac and installed a larger 5" filter box. (Helped a lot with allergies at the very least). Getting retested for mold toxins as well.
Really praying test for MAC will still be negative!

@loreofox80 I was diagnosed in August of 2022 after having lost 35 pounds. My primary care doctor finally realized, after my many visits of telling him something is wrong, that I needed testing. CT Scan showed BE.
I was started with "watchful waiting" after my visit to NJH and with NJH finding MAI...which is a bacteria under the "umbrella" of MAC.
I suffered many months with what to do...antibiotics or no antibiotics. I decided against them. I am now 82 and 9 months into life. I have not had an exacerbation and feel well...no fatigue etc.
I believe I have had the infection since at least 2018 due to what I was brining up every once in a while. Therefore as I tell others I am living with an infection in my lungs but feel fine.
Hopefully the next few years will continue to be the same for me...feeling fine. To me the Eczema is my worse problem that also was diagnosed in 2022.
Hope all replies have helped you as they did for me during my period of "what to do".
Barbara

Egads! That is basket full to deal with! I will certainly send out negative MAC vibes for you. Let the community know what the test result was. We all share what you are going through. Lots of inflammation too. Good luck! Nancy

Thank you very much! Sounds like you are in a good place. May it continue on for a long, long time. I am curious why you couldn't use the Smart Vest. My insurance turned me down. Sort of saying I wasn't yet sick enough and other strategies hadn't failed enough. It couldn't possibly have been that they didn't want to spend the $12,000???? Thanks again. Nancy

Since I'm basically skin and bones my pulmologist thought that a vest might be uncomfortable, so she ordered a cough assist machine instead. It does help clear out gunk, and treatment times are only about two minutes long. The one I have, made by Biwaze, has an oscillation mode, similar to what a vest might do, but i haven't tried it yet. Might not be right for everyone. I think Philips also makes a cough assist machine. Best of luck to everyone.

Thank you Nancy. Trying to get a good sputum sample but really don't cough much up unless I'm sick ... so ... nurse said don't beat myself up trying to get it up. Thinking the 7% sodium nebulizer treatment and aerobika will work. Praying - just want to know if have MAC or not. Ugh

I was diagnosed 13 years ago, and don't consider myself to be "watchful waiting" for anything. I'm just maintaining my health by doing airway clearance, eating healthy, exercising; this is my new normal. I've never had an exacerbation.

Wow! Thank you for this simply awe inspiring information. Live each day like it is the FIRST day of your life---with awe and wonderment of what great options you have for living and learning! Do whatever it takes to keep it going and enjoy it to the fullest. Brava! Nancy

I was diagnosed last year with macrolide resistant M. Abscessus. May 2nd, 2025, I started on Arikayce, Nuzyra, and Linezolid, which made me nauseated 24/7. Zofran did nothing for me. I lost my voice to a whisper-due to Arikayce. I went to NJH and they told me there had been no changes in my CT scan since March of 2024 and my count was only 400, so I decided with my doctors approval to go off the meds and do "watchful wait". Last week, I got a message that none of my cultures were growing mycobacterium. Two sputum cultures were taken during my NJH stay. I still have 1 week left on test but considering M. Abscessus is fast growing, most likely I will get a negative test result. Cause for celebration? Most of us know, antibiotics are taken at least 6 months after the first negative test and think in most cases it's 12 months. So, I will be returning to NJH for my 3 month follow up in August and if everything looks good, I will go every 6 months. I use the Aerobika with the Ombra compressor with 7% saline twice per day. Suggested use is before breakfast and dinner. I highly recommend the Ombra, since the tubing and filter can be changed. I am also swimming at least 4-5 days per week in an outdoor pool. I live in AZ and in the summer it's too hot to walk. NJH recommended I do airway clearance before swimming.

Things sound pretty promising for you! Thanks you for sharing your good news. It really helps me a great deal to know that others have chosen watchful waiting as a pathway. Brava to you for having the courage to explore this possibility. Please keep me in the loop from time to time. Your courage helps me a great deal. Thank you! Nancy