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1478
@1478

Posts: 17
Joined: Jan 12, 2018

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

Posted by @1478, Thu, Jan 11 8:43pm

My mother was just diagnosed with MAC, having “the cough” for awhile now. After researching the internet all over the world on this bacteria culprit, I am trying to find out why the cilia in the lungs get damaged and allow this bacteria to invade. This bacteria is everywhere (water,soil) mostly. What has happened that people are getting this a lot NOW? Can anyone answer these three questions so that we may link WHY this bacteria may be getting stronger for some, please. There has been a 30% increase of the diagnosis of MAC in the last 20 years. It seems to be a large number of small, petite white woman, getting diagnosed between the ages of 61-17, in the little bit of studies that have done. I want to find the connection! I am also in the medical field, and don’t want MAC when I get to 61 years old. (10 years)

Have you ever smoked? how long? when did you quit?
Have you ever been an RN, or worked in the medical field?
Have you ever had whooping cough?
What part of the country were you raised?

REPLY

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!

@sharonestabrook

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!

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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

@sharonestabrook

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!

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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

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

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

@ronaf

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

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

@carla1196

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

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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!!

I think it’s very likely there’s a genetic component to both Bronchiectasis and MAC. My sister was diagnosed w/ Bronchiectasis some years ago. I wouldn’t be surprised if my Mother had it also. She was often clearing her throat, blowing her nose and coughing. And yes, it’s more common in post menopausal, slight women. There may also be an immune issue involved with the infection. However, when I talked to my specialist about it, he said, as of now, there’s no way to tell. There hasn’t been enough research done in this area. Maybe someday soon there will be.

Liked by 1478

@carla1196

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

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Hi Carla, my name is Cheryl. From what I understand of this MAC/MAI/NTM is “prevention”. My mother was never diagnosed with acid reflux, nor has any acid issues with it. It is better to take precautions to prevent any further damage that may be going on. In MY humble opinion, it would be best to ask your doctor to check these things out at your next appt.

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

@1478

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

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Hi,
I was diagnosed with Crohn’s at about age 51. When it flared again in 2017, I was going to be treated with Remicade. A routine lung X-ray found the nodules. That led to the bronchoscopy and the diagnosis of MAI. It has been difficult because the MAI had to be treated before I could get my Remicade. I was hospitalized five days at Mayo for the Crohn’s and yet I couldn’t get the Remicade because of this stupid MAI. I just finally got my first Remicade treatment January 4 because I had to complete 30 days of MAI treatment first. I had absolutely zero lung symptoms. I still don’t, and yet I’ve got to take the medicine for 18 months. To top it off, my dosage of the three drugs is about four times stronger than anyone I’ve ever read about. Plus, y’all keep saying you take the three drugs only three times a week? Not me. I have to take all the drugs every single day.

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