What causes the bacteria to grow in some people and not other?

I was diagnosed 9 months ago. I am not taking meds. I am 69, white, a retired RN, 5'2", weigh 120 lbs. I play pickleball and do zumba, so I do a lot of aerobics. I have gerd. I was a pack a day smoker for 20 years and quite when I was 36 years old.
University of Nebraska is doing a genetic study of patients with MAC, according to my pulmonologist.
I love reading the posts from everyone! I wish we could have a giant group hug!

Good Moring Sharon, my name is actually Cheryl and I appreciate this information soo much! I am glad to hear there is so much information and that people are starting to be aware of this thing called MAC. Your past sounds like my mothers. Very health life style but did smoke for 20 and quit in 1982. Being an RN, from the 1960's, she had multiple TB test of course. She has stated that there were times that her tests would come out positive and she would have to go a second time, but that always came out negative. We know this TB does sit dormant for years. My mother is diagnosed with the "Lady Windemere Syndrome". I don't know if there is a connection with that, because my mother who is now 75 years old has NEVER been diagnosed with any autoimmune disease, nor has taken any medication in her life. She is small in stature; 5 feet barely, thin framed, which fits that diagnosis. I have the same background, physical build, smokes years ago and just turned 50. I do NOT want this. Thank you, I know we will find the better ways to treat this!!

Hi, To answer your questions ( I didn't see your name); 1. I've never smoked tobacco. Only marijuana in my 20's. I'm now 65. I was diagnosed w/ MAC May 2016. 2 .I've never worked in the medical profession. 3. I've never had the whooping cough. 3. I was raised in the Boston, Mass. area but have lived in Northern CA. longer in the bay area. Good luck with your research. Thanks. Rona

I too have been told I am of the Lady Windemere type. But I am not buying that. I feel the root cause is silent aspiration due to the acid reflux at night. The moist lung environment is a breading ground for the MAC. Sleeping with my head elevated, avoiding late night eating and drinking I believe will help with that. I live in Omaha, NE.

Hi everyone. I also have been told I have pulmanary MAC . I found out back in March of 2017 that I have this. I had been in the hospital 2 time with pneumonia both times with in a year of each other. When I was told about MAC I was also told for mor information, to read up on Lady Windermier as well.
I smoked for over 25 years but quit 2 years ago. I have been on the 3 medications for 8 months now with lots of side effects. I was just taken off the ethembuthol last month due to serious breathing problems. I do not have acid reflux and never have. I was raised in Cincinnati, Ohio. I am of very small frame weighing only 97lbs now. I use to weigh about 115 before I caught the 1st bout of pneumoniaa couple of years ago. I was 54 when I found out I had this and I never worked in the medical field.
I hope also you can find a connection. Best of luck to everyone who is fighting this terriable thing. HUGS

@1478 I found out I had lung nodules in 2013 and MAI and bronchiectasis in Dec 2016. I was just turning 57. I quit smoking about 24 years ago, and, am embarrassed to say, I smoked for 22 years (i was really young when I started). I’m also small framed, 5’ and about 120 pounds (heaviest I’ve ever been)! I have been working in Elementary Education for 29 years. Born and raised and still in Brooklyn, New York. Never had whooping cough, bronchitis or pneumonia, always exercised and was always athletic. I was told about 10 years ago that I had acid reflux, but I felt I never had any problems or symptoms so didn’t take anything for it. NOW, the thought is the nodules and inflammation, (which makes a great place for MAI) could be caused by silent aspiration or swallowing problems. Right now, no antibiotics, because aside from the the throat clearing and mild cough, I don’t have any symptoms. So I use an Aerobika 2x a day for lung clearing, sleep on a wedge , and try not to eat past 7:00 and hope for the best! Bronchiectasis is for life, so if I can keep my lungs clear, hopefully I can keep the MAI at bay.
Good luck with your research. Hopefully, someday, someone can figure it out and find a cure.
Gina K

@carla1196, Hello Carla, were you actually tested for acid reflux and found to be negative?

@ronaf , Hi Rona! Haven't heard from you in awhile. How are you feeling and doing these days?

I have not been tested for acid reflux. I do not have any indestion or burning to even consider have this test. Should I ask my ID Dr. about testing for this? i am new to the group and I am just now learning all the diffrent approches the Dr's are taking in treating MAC. I also forgot to tell you that I have been in central Florida living for the past 35 years. Any and all advice will be greatly apprciated

HI again, this is Cheryl again, who started this topic. You are ALL wonderful!!!! Thank you for taking the time to talk this out. Knowing that you are just a few who responded, in a sea of many who are getting this. I am MOST surprised at the lack of extrinsic factors!!! This is OUTSIDE the body "factors" that are consistent in everyone. ie: pollution, smoking, geographical locations, etc. I am so SUPRISED on the intrinsic factors with this group!! The common factors are: Inflammation- chronic, which is acid reflux for some. This causes a constant irritation in the throat, sending out mast cells to heal consistently, which side effect is inflammation. Also the acid is burning/destroying the cilia that helps keep bacteria out of the lungs. With my mother, she had been getting check-up lung x-rays for the 7 years. They kept telling her that there is inflammation in the lining of her lungs, and could not figure out why. After years of inflammation, and the lining outside the lungs trying to heal itself, now the lining has thickened (scar tissue) and she no longer has the stretch in the lungs to cough hard and cough the bacteria out. This all (acid reflux-chronic lung inflammation) causes fluid/mucus to increase build up and harbor (protect & grow) the bacteria even more (bronchiectasis). We know that whatever is damaging the lungs to where they cant fight this bacteria is a issue. Another common thing with "this group" who answered, is that this affects either the lungs or the GI (gastro intestinal-stomach). (Lady Windemere Syndrome study from 1992. Chicken or the egg.... This is consistent with H1, H2 and H3 receptors (which affect histamine release/gastric acid release) this lead me mast cell in the GI tract, nicotinic receptors and histidine/histidine decarboxylase. The other common things are: "most" woman with this specific diagnosis is post menopausal, this effects smooth muscle tissue, the age is "baby boomers" nuclear fallout?.
I have a lot more to go from here!!!! I am not a doctor, I have been a paramedic on the streets and in the ER's in 2 different states for the last 13 years. I am an advocate for patients!! Some other things you will find when looking this up is: One child a week in New Zealand is being diagnosed with bronchiectasis from whooping cough, or other lung issues which may cause MAC for them in the future. In Japan this diagnosis is on the rise, with "elderly woman 66 years old+", with no history of smoking. There are numerous Universities that have studies out to see if this is genetic or has an DNA component. Lots of work to go! Thank you for all your information. THANK YOU!!