← Return to Help! Positive testimonials required

Discussion

Help! Positive testimonials required

MAC & Bronchiectasis | Last Active: Mar 8 1:16pm | Replies (55)

Comment receiving replies
@kthuerk

10 years ago at age 57 I had a CT that had all the features of MAC, according to pulmonologist and radiologist. Had bronchoscopy, nothing grew on culture. This process was repeated several times over the past 10 years, with progression of the Bronchiectasis, nodules etc, but cultures all negative. Until last spring, when bronchoscopy yielded positive MAC culture.
I started azithromycin, Ethambutol and Rifampin 3x/week. Rifampin gave me fevers of 103, flu-like symptoms. Tried Rifabutin, same side effects. So I took just the remaining two drugs. Had a bronchoscopy in December to get a current culture, so insurance could consider the addition of (inhaled) Arikayce. After 8 weeks- no bacterial growth! My pulmonologist and infectious disease doctor were pleasantly surprised. Of course I will have to continue the azithromycin and ethambutol until December (one year after negative culture). And I’m sure it will have to be cultured again at that time.
Just wanted to let you know that there can be successful outcomes. Since our Bronchiectasis still remains, we have to adjust to living with a chronic condition, do lots of research, and be our own health advocates. Best of luck to you.

Jump to this post


Replies to "10 years ago at age 57 I had a CT that had all the features of..."

Do you do sputum culture too? Or does the doctor always recommend bronchoscopy?

Hi, I was diagnosed with MAC in September of 2023. I have not started the meds yet. Did you have any issues with Ethambutol? I believe that is the med that is suppose to cause eye issues.
Thank you

Maybe they did’n find Mac but it was present since the beginning…