Life Expectancy with MAC, Nodular Bronchiectasis

Sorry you're going through this. Some form of this question has been asked several times. You are not alone! Until members have a chance to weigh in, here are some past discussions on the life expectancy topic. Mostly something you die with not from. Some people have eradicated through airway clearance alone without the cocktail but that's a discussion between you and your doctor.
https://connect.mayoclinic.org/group/mac-bronchiectasis/

I know it's very concerning to read that and am sorry you're dealing with it. Just remember, If you don't have positive cultures, it's possible you don't have MAC. I was thought to have MAC based on CT's due to nodules, trees-in-bud, bronchiectasis, etc. To everyone's (local pulmonologist and Mayo's) surprise, my sputum cultures on bronchoscopy were negative for MAC-just normal flora.
The radiologist still said findings consistent with MAC on 2 CT's after that.
I know I'm lucky, but just wanted to share a bit of hope.
I do daily airway clearance for bronchiectasis to reduce risk for infection. .

I was diagnosed in 2002 w/Mac and took ethambutal, biaxin & rifampin for 18 months. I had no problem with the medication's. A trial of rifabutin put me in the hospital for five days with pancytopenia while they try to figure out what was going on. Removing rifabutin and replacing it with rifampin did the trick.MAC no longer shows up in my bronchoscopies, but I do have bronchiectasis and aspergillus & pseudomonis has colonized my lungs. I have been treated for it for bronchiectasis for years now. I also have nodules on my lungs that pretty much have stayed the same over the years. I just returned from a week at National Jewish Health and it did more for me with education and correct medications, including removing my inhalers and oxygen and teaching me breathing exercises. I am 76 years old and literally thought my life was coming to an end until I went to see these amazing doctors and healthcare professionals. I suggest to anybody who has MAC , if they can, get to an NTM / bronchiectasis approved clinic to do so immediately. It will save a lot of uncertainty and like me wrong misguided healthcare.

This may be a dumb question but since your sputum
Sample was negative for mac (mine was too) and I was just diagnosed June 30th. How much do you cough up? Any color? Any small balls of anything. I wish we had something to compare to to look at so we would know if getting all the sputum emptied when doing airway clearings. I'm using 7% sodium without any bronchodilator (levalbuterol) at this time. Although I do read on several groups alot of people use levalbuterol first. 🤷‍♀️

This disease takes your life long before it kills you

I'm one of those who cough up v. little and when I do, it's yellow. It's hard for me to get enough for cultures.

Your comment caught my attention as you are a fellow allergy/sinus sufferer albeit under control.

Until I started taking Allegra for about the past week, I had zero issues with producing enough sputum for a culture. It seems the daily Allegra has diminished my chest mucus significantly. I’m thinking my sinuses were draining into my lungs overnight and giving me a bunch of gunk the next day to cough up. Now that I’ve started the Allegra it’s amazing how little I get up upon clearance. I hope this is a good thing!

I hope so, too! I impressed that only one worked for you.

Hi Mark,
As for the IBS-C, the FOD map really helped me in determining which foods were the culprit. The best probiotic I have found for IBS is VS3#1-not cheap but highly effective in treating IBS. This may help you prepare for the antibiotics-if and when needed. Many take the MAC antibiotics without side effects. The good news is research continues in this arena, and it makes me hopeful. I posted this study yesterday and hate to repeat myself, but it may give you some encouragement.
Kathy

Thanks so much, Kathy.

By any chance, did you mean VSL #3? I didn't find any results for VS3 #1. Thanks!