Newly diagnosed with MAC

Sorry about the diagnosis but you will find this to be a very helpful community with many posts you can review to learn about the disease. Many doctors recommend Mucinex to help thin the mucus to get it up and out. There are also a number of people who take NAC either orally or nebulized and/or mullein tea.

Thanks for your input. I am currently going to Cleveland Clinic Main campus to an infectious disease doc and also to a bronchiectasis specialist doc. I'm also interested in doing things that can mitigate the side effects of the "big three" as everyone calls Azithromycin, ethambutol, and rifampin. I will be starting these next week. I' anxious about the whole thing.

I can understand as I felt the same way when I was diagnosed 11 yrs ago. I did surprisingly well with very little side effects. I took 5 days a week with weekends off and looked forward to Friday every week🙂. I took them for 15 months and have been MAC free since. That seems like a long time, but w/o side effects it was like taking vitamins. I have other issues to deal with and am waiting to be approved for a new drug, Brinsupri, to treat bronchiectasis that my infectious disease doc recommended. My issue is shortness of breath and fatigue with some coughing that produces mucus. I hope your treatment will be without concern and with good results! Wishing you well!

Thanks for the input, Jackie. I am currently having trouble with clearing my lungs because I think my mucus is too thick. I just started nebulizing saline and an acapella, but these two things have made me feel much worse. I cough and cough but not much mucus comes up. Did you have any side effects from the antibiotics?

I am newly diagnosed with MAC and don’t have a productive cough.As I’m 77 yrs old I am very apprehensive about the 15 mths antibiotic regimen as most antibiotics send my GERD totally off the charts. Doing AEROBIKA ,exercising ,good diet etc .Any advice would be greatly appreciated!

@irismargaret I was able to get a productive cough with the oscillating vest, sometimes called the thumper. I nebulize three times a day now with the vest. I have had GERD for 40 years and tried every ...prazole there is. I got better results from Voquezna, a new and different way to stop acid production. Ask your gastroenterologist about it.
Do not put off the MAC antibiotics because of GERD. There is an answer. I had MAC 15 years ago and have been free ever since. Bronchiectasis and an incurable infection plague me now. but they are under control.

@irismargaret Hello and welcome. If you read a while here, you will learn that having MAC does not automatically require antibiotic therapy. There is a protocol called "watch and wait" - here is a very helpful publication about NTM (nontubercular mycobacteria of which MAC is one type):
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf
On page 11, it talks about when to watch and when to treat.

Here is the latest from Dr Charles Daley at National Jewish Health about when to treat and when to watch:

@egayle187 Thanks for replying and glad you have this thing under control and are doing well.Just wondered if you were as old as me when you were diagnosed? 78 in July

@sueinmn
Thanks for your kind reply. Have been reading so much about MAC and I am lucky to have an experienced MAC respirologist .Think I’m 99 % in favour of “watch and wait”as I have a very good quality of life at the moment and the prospect of 15 months of increased GERD ,gastritis ,nausea ,fatigue , visual problems and possible liver damage due to the antibiotics isn’t “lighting my fire”.!

@gardengirl12
Did your infectious disease doctor tell you what you needed to do because of the ethambutol? I was on the "big three" for 9 months. Each month I had to get my eyes checked, an EKG and blood work.