MAC disease , COPD, emphysema

There is certainly no way for me to speak for anyone other than myself. My first go round with MAC was 10 years ago. It was misdiagnosed and I would say that I felt sick, weak and coughed day and night for maybe 8-10 months. I did not have any medications except for an inhaler as needed. I had another infection in June of 2020. This one was diagnosed. I did not receive antibiotics, but began nebulizing saline and albuterol and using a vibrating vest twice a day. I felt sick, weak, and coughed all the time for at least a year. It was very discouraging. It was not until I learned about postural drainage (on this site, not from my former pulmonologist) that I began to find some improvement. At this time, I feel like I am living a pretty good life for a 75 year old, but there was a lot of frustration while I was in the thick of the disease. It seems to me that there are many pieces to this puzzle, and that they may be different for everyone. Don't give up hope, keep searching for answers to your questions. This site is a wonderful resource.

Did you take the antibiotics?

No, I have not taken antibiotics.

I’m taking 3 antibiotics for 1 1/2 years and I still have growth in my lung. It’s still growing, still getting fevers on and off. I keep losing weight and so weak. Has anyone had mac for this length of time.

Hi bvlp1019, i’m sorry to read that your treatment is not providing you with any relief. If CT scans are showing progression, and you still feel ill, then it strongly suggests that the treatment isn’t working. A second opinion, with experienced physicians would be a good idea.

I was diagnosed with MAC in 2017 and have been on antibiotics, Arikayce inhaled for 6 years and have never had a negative culture. I also started with a 10 cm cavity in my left lung which has shrunk to 4 cm since treatment. I've been on all this a long time but its all kept me stable.

Do you feel sick everyday and weak. I have no appetite and I sleep a lot.
Thanks

My Heart goes out to you. I had been coughing for five years before. I finally got my pulmonologist to test me by Bronchoscopy for MAC. I also have COPD, asthma, bronchiectisis , and pulmonary hypertension. I’ve had a CT scan every year for the past five years, but I have a scar tissue and they always said that there was no changes. I found out they weren’t treating me for the pulmonary hypertension either I took my Care into my hands and completely changed my entire team. I will see an infectious medicine doctor later this month, and I do not know if he will want to start treatment or what. I also have heart problems, so I’m not sure how that will affect treatment for MAC. I certainly do hope that you can find the help that you need. Get an pulmonologist who will help you and get a referral to an infectious medicine Dr. Do your research and direct your own care. I hope things go well for you.

I think I felt weaker and sicker in the beginning of all this. Once I started the antibiotics, my initial symptoms subsided but I did end up with some digestive issues until I got a better grip on that eventually. I have bouts of feeling less well than other days. I work full time still so I rest ahead of time and try to stock-pile energy. LOL! My appetite comes and goes too. I'm naturally thin and tall so I can't afford to lose much weight. I drink high calorie boost shakes every day and that helps a bit.

Thank you for sharing I’ve been very ill for 2 1/2 years. I can’t work I barely have the strength to walk across the house. I’m on 5 different meds it seems that they could be causing me to be so drained.