Hello! Welcome to the site. You are not alone! This is a very tough time to be newly diagnosed, just starting meds. Are you certain that no one in your Pulmonogist office is available to do a Tele medicine visit with you?
The meds do take time to kick in.

Katie

Welcome mondragon. Sorry to hear about the interrupted sleep and constant congestion. What are you doing for airway clearance? Has your doctor made any suggestions for a different method that may help?

hi Mondragon! Welcome! I’ve been on the big-3 for 3 months now. I have Mac ntm and Bronchiectasis. It was diagnosed after several years of recurring pneumonia’s... last year I had pneumonia 6 times. My pneumonia’s don’t show on anything but ct scans, which has lead to many misdiagnosis until the pneumonias became critical. I had crackly breathing like you and many mystery symptoms that the doctors frankly dismissed prior to my diagnosis with Mac. I am very thankful to have started the big-3 before the virus pandemic started as I’ve been healthy for the first time in years. And for the first time in several years, I have hope again.

When I started the big3, I felt low energy for the first month, but that has improved a lot. I take milk thistle capsules (in hopes of mitigating liver impact from the antibiotics) and probiotics every day to help reintroduce healthy gut bacteria in between the antibiotics. I’ve found taking rifampin in the morning by itself, and then the other two antibiotics together around 4 pm seems to work best for me. I’m also taking apple cider vinegar capsules for acid reflux issues (as I have acid reflux and that can contribute to causing pneumonia) and have been surprised at how effective they have been. I’m sleeping on a foam wedge to elevate my upper body and that has improved my sleep. I believe the night sweats are diminishing as I’m not waking up with them lately (so I hope that means the Mac is being killed off by the big-3!)

Let me know if you have questions about anything... happy to share my experiences with you. I’m so glad you’ve started the treatment! I told my doctor I was surprised that I was feeling better after only a month on the big3 and he smiled and said many of his patients have said that.

Hang in there! ❤️

You mentioned you started the big 3 antibiotics but still don't feel better. My first time trying the big 3, I had very little guidance from my Infectious Disease doctor. I started taking full doses of all 3 on day 1. I experienced headaches, fatigue, and loss of appetite. I discontinued the antibiotics after 3 weeks because they made me feel so ill. A year later, I went to Mayo Clinic. The pulmonologist told me if I ever need to be treated for MAC, to contact him and he would tell me how to start the antibiotic therapy. Ultimately, I did need to resume therapy. My new Infectious Disease doctor spoke with the pulmonologist and she followed his suggestion of introducing the antibiotics gradually. Start the first one at a low dose, then increase the dose after the low dose is tolerated. Continue this way until the full dose is reached. Once that is tolerated, introduce the second antibiotic following the same procedure. Finally, when the full dose of the second antibiotic is tolerated, add the third. It made a world of difference for me. I never had any issues with those antibiotics starting them this way.

Also, I used the 3.5% saline solution for a long time. I finally changed to 7% when I tolerated that during a hospitalization. I found that the stronger saline solution was the key to coughing up the offending stuff. It was a game changer for me. And I agree with the use of mucinex - that helped too.

I hope you're feeling better now and have visited with your doctor in some form. I wish you luck on your journey.