How is everybody doing?

Inspiring story about a very young man (18) who's doing the almost impossible with bronchiectasis: https://bronchiectasisnewstoday.com/2017/08/07/young-musician-bronchiectasis-becomes-britains-best-french-horn-player/

@sumner, this is Carolyn (@cld120). I was diagnosed with MAC in mid-June and after going to Mayo a few weeks ago, began taking Zithromax this week (no problem) & begin Rifampin next Monday & Ethambutol the following week. My gastroenterologist said to take Florastor to help fight antibiotic induced diarrhea, which was recently confirmed in a health publication I take. It's a bit pricey; I did some cost comparisons & ended up ordering 100 count from Costco (online) for ~$57.00.
Good luck!!

I would like to hear from those diagnosed with MAC -- I have bronchiectasis and Mayo's said 2 years ago that there was some MAC bacteria in my testing at that time. They decided to not treat it and to just watch. They are treating for bronchiectasis bacterias. I'm not ill --- my flares are horrid coughing and green phlegm ---- whooping cough sounding.

My question is: What type symptoms would I expect if indeed MAC could be a problem for me at this time. Are you ill --- coughing ---- or what symptoms are being experienced with MAC. I oftentimes wonder if it is better or worse for me at this time. My last four 24-hour sputum tests have been negative but I realize no one would know about MAC in a 24-hour test. Can others help me???? Thanks

@auntnanny - I have no symptoms so will let those who do answer...I know they have all had hacking coughs and eventual blood production...

Did they just learn you have MAC from sputum collection (with no symptoms???

Thanks, Terri, for your quick and supportive reply to my questions about taking probiotics with the antibiotic cocktail for MAC. My name is Sally, and I am 72 years old. I was just diagnosed with MAC, after I had suffered from 7 months of fatiguing coughing and throat-clearing. I had been to a number of doctors, who had diagnosed asthma, acid reflux, and possible heart probs. After a negative stress-echo cardiogram, and trying the acid-free diet, I found a great pulmonolgist at the University of Michigan, who immediately ordered a CAT scan and then a bronchioscopy, after seeing infection on the lungs on the scan. I will say that the bronchioscopy at the U-M was easy - they did put me out, It was similar to the mild sleep-state which you experience with a colonoscopy, except there was none of the dreaded preparation the night before! I was happy to have the bronchioscopy because it has offered a very nuanced diagnosis of pseudomonas (which cultured out after only a week in the Petrie dish) and MAC, which just showed up, after 3 weeks. I have been away from Ann Arbor for some weeks, so my doctor has been giving me these results over the phone. I will return to U-M next week to have another consultation with him and then to begin the MAC antibiotic treatment.
So I am very grateful to you, Terri, for your info regarding baseline testing for eyes, hearing, liver and kidneys. I will discuss these with the doc next week. And, Carolyn, thank you for your suggestion about Florastor, which your GI doctor prescribed for you to help your stomach withstand the meds. And, Robyn, I appreciate your recommendation of Renew Life probiotics, with 30 billion live cultures. I will look into this too. I hope to meet with a Nutritionist at the U-M next week to seek counsel about an immune-system-building diet, since a diminished immune system makes us more susceptible to lung bacteria.
I am much comforted to have found you all, appreciate your support and wish you well with your challenges. Sally

@auntnanny I believe you're asking me? I learned quite by accident from a CAT scan while in the hospital for another reason...followed up with recommended bronch and here I am!
BTW, I learned from our wonderful group founder that it's quite helpful to specify to whom you're speaking as I do with you...works very well!
Terri

Terri ........Thank you --- for your response. I'm also wondering about any others and how their diagnosis came about. I appreciate what you do.

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I'd been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the "Big Three" meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently--it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr...

Thank you for your response. I've never had a broncoscopy but do have bronchiectasis (finally diagnosed at Rochester)...... it was 5 years of wrong diagnoses where I am. I was told in Rochester there was a small amount of MAC and they conferred and decided to not treat it at this time. Well..... that was two years ago and I just get worried that perhaps it has progressed-- I have no way of knowing. I'm not really ill -- just flares of the horrible coughing which they recommend antibiotics for me and I get over it in about a week. But...... feel uneasy wondering if MAC is worsening and I don't know it. Thanks again