Anyone had experience with alternatives to Big 3 drugs for MAC?

Good for you Rick. You have fortitude. What I am finding is that since RSV was added to my resume I breathe and I pick something up in spite of wearing a mask. Woke up this morning all congested and coughing and with a sore throat so here we go once again. The only places I’ve been are Lowes, Walmart, the grocery store, and to the vet - and certainly not all on the same day! I always wear a mask and keep hand sanitizer in my purse and car. I don’t want these lung diseases to define us either, but in spite of trying to stay healthy I manage to pick up whatever is in the air. I need a bubble! Sometimes I think we don’t fully recover from one thing only to be slammed with the next thing. I wish there were a miracle pill we could just take one of and be healthy again. Hope springs eternal! Not giving in or up either….(Irene 5)

There's not any "alternative treatments" for MAC unless it the nebulizing Albuterol/Levalbuterol along with a Saline which many do along with the big 3. My upper left lung ended up growing a 10 cm cavity in it within 30 days while waiting to start the big 3. The damage MAC can do is worse than the treatments for many patients and honestly not worth taking the chance on not starting the big 3 since the damage is hard to reverse. Once I started the big 3, I not only felt better and symptoms improved but I began on the "staying stable" journey and the cavity shrunk to 4 cm eventually.

I think you will find on this forum that we all respond differently. I didn’t know I had bronchiectasis and MAC until I coughed up blood which led to further testing. I went on the big 3 for a year and still tested positive for MAC. During that time, I educated myself with the help of this forum and began nebulizing with 7 % saline, using an aerobika and postural drainage, active cycle of breathing. I also travel a great distance to see a specialist. I have been negative for MAC now for more than a year with no progression of the bronchiectasis.
In hindsight, I would have tried the nebulizing, etc, BEFORE I tried the big 3. I feel the antibiotics did a number on my gut microbiome. But this is just my story- I do not and have never had any symptoms besides a slight occasional cough.

I've had a mid line for 7 months. Im being given amikacin and rocephen. I am also doing daily 7% hypertonic saline solution in the nebulizer which I learned about from this forum. CT's haven't shown any changes but I am no longer coughing up mucus, except when I use the nebulizer. My energy and appetite are improving. Second bronchoscopy in 5 months. Hoping for a negative result. Thank you all for great information.

Thank you so much for sharing your experience. I had a CT recently and showed no damage after over a year. I have been reluctant to start antibiotics. I read about severe side effects

Just FYI I took the big 3 for almost a year with no side effects. Wishing you luck - I no longer have MAC to my knowledge.

No side-effect? No hearing loss? No vision change? Which dose were you on, how many days a week and for how long? Did you take any supplements? Did you take NAC?
I am terrified of starting the big 3.

Welcome to Mayo Connect. PLEASE! do not let the fact that people have side effects from the antibiotics stop you from doing what is medically necessary.

Every person has a different experience with their disease, their infection, their airway clearance, and when needed their antibiotic therapy. In spite of how it sounds here, not everyone has a terrible reaction to the medications, and even when we do, if the infection is severe, it may be necessary to regain out health or avoid loss of lung capacity.

We have addressed this in the past, and you can read about it here:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/

Maybe you can tell us a little about how/when you were diagnosed, how you have been managing so far, and whether it is now being recommended that you begin antibiotic therapy?

Sue

I had a bronchoscopy last year which revealed a fungal infection, Pseudomonus and MAC.
I was successfully treated for the fungal infection for 3 months and it has not come back. I felt so good then that I declined antibiotics treatment for the other 2 infections and instead I took some NAD+ precursors (NMN) and the antimicrobial pterostilbene. and daily Budesonide nebulizing, with approval of my pneumologist and i D doctor. I did extremely well for a year, exercising everyday, pushing harder and harder on cardio. But after choking on a waffle beginning of December, I started to bleed. Which triggered more testing: flare-up of Pseudomonus pneumonia, and the MAC. Was treated for Pseudomonus and my I D doctor started me on Azithromycin and Rifampin. Ethambutol was delayed because I could not get an appointment before end of January with opthtalmo. I took the 2 meds for 10 days and stopped because my blood pressure was constantly elevated and I could not sleep more than 3 hours. No support from my PCP and my I D doctor insists the side effects are minimal for all 3 meds and that the very vast majority of patients have zero issue on them.
So i have been looking for info on the Mayo site. I am also contacting Cleveland clinic. I know reactions to those antibiotics vary from one person to the next but I believe knowledge is power and I think there is always something that can be done to mitigate effects. My pneumologist never talked to me about airway clearance. He congratulated me when I told him I did not bring up sputum and barely coughed.
So I am a little lost right now. I must say that I am feeling worse after stopping the meds than I was feeling before getting on them. I was feeling great before taking them. Now it feels like I have a lot of phlegm.
The regimen that was prescribed to me was: 500 mg Azithromycin, 450 mg Rifampin, Ethambutol, 1200 mg Ethambutol, those 3 every day. I messaged my pneumologist to ask him if he would ok me taking NAC. No reply. I am a tiny person: 108 lbs on a good day since taking those meds for 10 days. Before I was around 110-111 lbs. My O2 level is good.