If medication worked for you, did you begin to feel better right away?

@traceyk I had the same symptoms prior to starting antibiotics minus headache. Extreme fatigue, terrible night sweats, cough and congestion, body aches, chest heaviness and pain in my lung. I couldn't even lay in bed so I slept in a recliner. The symptoms did go away after starting on the big 3 but I don't really remember how long it took. I want to say it took a couple of months and I gradually started to feel better. Since then, I've had no symptoms. I am back to my busy life, work, dinner, house cleaning, etc.

I went down hill slowly and I can’t say I felt great on the medication, although there was improvement. In the early days I also went to use a hyperbaric chamber and that helped me physically. Just couldn’t afford to keep up with it. The side affects of the Arikayse are as bad as having MAC but I was getting more oxygen in my system. The hyperbaric chamber can help a lot but keep taking medication the chambers won’t kill the MAC. Walking and breathing is much easier using the chamber.
My hair was turning white due to lack of oxygen and I am experiencing a return of hair colour. How dark I will go is anyone’s guess as I am in my seventies. Before coming down with the MAC infection I was doing 20,000 steps per day which gradually reduced to less than a 1000. I hope to get back on the treadmill soon.

How is your CBC complete blood count? They can be elevated with mac. Antibiotics will help bring these back to normal range. But improvement by oral big 3 is slow. Faster treatment is with antibiotic iv or inhalation

I found out I had Bronchiectasis by accident when my cardiologist did a CT scan to check my calcium score. I had lost weight and couldn’t put it back on, had chest pain, no energy, constantly clearing throat, coughing fits and horrible night sweats. When I started big 3 the night sweats went away pretty soon afterwards. I had stomach issues from meds. but I got thru the 18 months of treatment. I was not a happy camper during treatment but I was able to gain 20 lbs, no coughing or clearing throat constantly and no night sweats. I can’t say I’d go thru treatment again but in hindsight, I’m glad I did. Make sure you get baseline vision, hearing and get blood tests for liver function if you do meds. I didn’t do that until 6 months in and a new doctor monitoring me. I wasn’t given a choice before I started big 3 because I had idiot docs at first and they scared the crap out of me. (my favorite word that got me thru treatment was impermanence- no matter what’s happening, good or bad, is not permanent). It’s a lot finding out one has bronchectasis and MAC and life as we knew it has changed forever. I still struggle with airway clearance and it’s so time consuming but I know it’s super important. I feel blessed to have all the people in this forum and have learned so much. Good luck, Rosemary

@traceyk When I was first diagnosed I was in the hospital with both lungs saturated with pneumonia. After I had a 6 day stay in the hospital I was diagnosed with MAC and Bronchiectasis. I had extreme fatigue, coughing, night sweats, and feeling deathly ill all of the time. Returning home I was on two antibiotics for 20 months, but still tested positive with MAC. With the second round of antibiotics, I also inhaled Aricayce 7 days per week for 12 months, then 3 days per week for 3 months until the Aricayce caused permanent hearing loss but did help with all of the symptoms. It took between 7 and 8 weeks before I started feeling well enough to function. The reason I know how long it took to feel better I logged my symptoms and how I physically felt including any symptoms each day. I did have side effects from the two antibiotics and the Arikayce. I was not on the Big 3; just Ethambutol and Azithromycin with the Arikayce. If I had known or been told I would have taken the antibiotics after dinner or at bedtime, and not after breakfast. I think that might have helped with some of my side effects. I've learned from this forum and the NTMir forum that the timing of taking medications can be helpful. Plus starting Arikace 3 days a week and not 7 days a week gradually working up would have also been helpful. You do need to do your research listening to your body. No one knows your body better than you and what you can and cannot tolerate. I am self-educated on many things I do and have learned from the two forums that I check daily. I taught myself airway clearance techniques that work for me.

MAC and Bronchiectasis are a journey and not a race. They are time consuming diseases, but if you have a good team of doctors and diligence with your recommended regimen, especially airway clearance, you can and will feel better. Always be on the lookout for possible other issues that you could acquire, like GERD. The timing of airway clearance twice daily including the sterilizing can be daunting and time consuming. Never give up and know that you are not alone in this journey.

I'm grateful for the lung forums I've joined and thankful for the contributions other patients have shared regarding their experiences and techniques so we can learn from each other. Many doctors are not experts or even very familiar with our lung issues; consequently, you may or may not be given all the advice you need to navigate these diseases and learn to manage them so you can function.

Best of luck!!!

I was diagnosed with Mac and bronchi stasis a year and a half ago. I experienced very similar symptoms as you describe. In March, my pulmonologist prescribed inhaled tobramycin 28 days on 28 days off.
It has been a game changer for me.