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

Thank you, Nancy. I am very cautiously optimistic. Forgot to mention, I also went to an Eastern Acupuncture and Herbal Clinic and the doctor there put me on 2 types of "SOL Nutrition" herbal supplements: 1. GOGO Energy and 2. Healthy Liver. I take 8 capsules each per day. Not sure if I can say it was courage, rather than desperation. Best of luck. Kathy

I’m doing pretty much the same thing. I decided that three antibiotics were going to be worse than living a healthier life. I got side effects from albuterol so only use 7% saline in a nebulizer and put one drop of tea tree and one drop of eucalyptus per vial. They are both antibacterial and I order the medical grade from a lady in Montana. My night sweats are almost gone. Nausea and Cough minimal. My breathing is better and my energy is better. My sister says even my voice sounds better. I do use the albuterol inhaler from time to time.Much to their chagrin, I told the doctors that I will check in about every six months. I’m very glad I chose this route!

Diagnosed with BE December 2024 and m abscessus in March 2025. My abscessus is macrolide resistant and my list of susceptible antibiotics is small (4) and pretty scary so i am leaning heavily towards refusing the drugs. I am 78 and also have cardiac issues, so i am waiting until after my August cardio appointment to decide definitively. You are all brave souls.

I think watchful waiting" is worth a try. I would also ask this community if anyone with cardiac issues has had experience with either watchful waiting or taking the antibiotics . And what they have learned from their experience. After all, this IS the frontline of the battle! Trust your gut after all the input comes in. Thank you for sharing. Circle back and let us know. Nancy

Hi ktw1147,

So glad you are feeling better! Keep it up! I have a question. What was the issue/s that made you stop albuterol regularly
? I ask as it gives me shaky hands and I got some of its mist in my eye and my vision in that eye was blurry all day. Just curious, if you care to share. Also did you always use 7% Sodium Chloride or for some reason did you bump it up from 3% or 5%? Thank you! Nancy

Hi Nancy, thanks for your comment. I don’t say much on here, but I do lurk on occasion. Using albuterol in the nebulizer made me dizzy, I had eyesight issues, and all kinds of weird stuff so I went to saline. I started with the 7% because that’s what I could get. I may go from 7 down to 5 but so far so good. I only use the little portable albuterol if I feel short on breath or energy, but I do not depend on it because it will make me wonky and I like golf. 😊 Kitty

Hi. I recently decided to do watchful waiting after dealing with side effects from the big three. I was diagnosed with MAC in August 2022. After my initial consult with my ID doctor, he put me on a three times per week drug regimen meaning I would take azithromycin one day and rifampin and ethambutol the next day with Sunday off of all meds each week. It seemed tolerable initially and I did pretty well managing the gastro effects of the azithromycin which were not too bad for me if I ate a big meal with no vegetables. The other two drugs didn't seem to bother me initially. That therapy was started in 2023 but then in 2024, I was noticing significant hearing issues, tinnitus and loss of hearing as well as neuropathy in my feet, legs and later it also started affecting my hands and arms. At that point, I had been on the meds for 14 months and I had a negative sputum sample but I really didn't trust the quality of the sample. Although I told the doctor that, he thought I'd been on the drugs long enough to quit and see what happened. He gave me sputum sample cups just in case I could cough something up which I, for the most part, never could. That was October 2024. In December I was suddenly able to cough up a good quality sample so I took it to the lab and it came back positive again. That was quite upsetting after all that time on the drugs. My ID doctor then decided he wanted to put me on a different three drug therapy of azithromycin, rifabutin, and Arikayce inhaled. But he said before I could start he wanted me to get EMGs on my legs and arms at a neurologist. With booking lead times as they are with these specialists, I was only finally able to see a neurologist in May of this year. Once I did, the ID doctor told me to begin the drugs with azithromycin every day the first week, then add in the rifabutin every day the second week and then add in the Arikayce the third week. I barely got through the first week of the azithromycin because of the gastro issues and adding the rifabutin made it a whole lot worse to the point where I was doubled over and sick in bed. I was also running a low grade fever, had headaches and was very nauseous. I had to quit the meds as I felt much worse on them and I hadn't even added in the Arikayce which has a whole set of side effects as well. My ID doctor closed his practice at the end of June and I had to go to a new one. When I told her about my experience and she reviewed my chart, she said that if I wasn't having significant symptoms which I'm not, it would be better to do watchful waiting at this point.

I am coming up on 73 and actually feel great off the drugs except for my now residual hearing problems (I need hearing aids according to the audiologist), and residual neuropathy in my feet and legs which only bothers me when I'm barefoot. I walk at least 3 miles every day on my treadmill at 4 MPH. I don't cough and don't get winded when I walk. I try my best at airway clearance but I've always had trouble getting anything up. My new ID doctor is ordering a vest for me as she says she thinks I will qualify as I've tried most airway clearance techniques and they haven't been very effective for me. So that's where I'm at with all this right now. I just wanted to tell my story because I know some folks wonder if they should take the drugs or not. That's definitely an individual decision, but this was my experience. It's different for everyone.

I had very bad tremors from albuterol so they switched me to Levalbuterol and it’s much, much better.

I'm soon to be 73 and I am in the same mode. I thought with the risks and side effects of the big 3, I chose not to go with them. I also have other ailments going on that just do not want to be more miserable.

Where did you get the advice to use the drop of tea tree oil and eucalyptus? Curious.