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

Posted by 1478 @1478, Jan 11, 2018

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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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.

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@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.

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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.

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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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@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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This is very interesting and I apprieciate the information. I can hear your frustration, but hopefully there is some light at the end of the tunnel, now that you are being treated for both. I know from patients and family that Crohn's is rough enough as it is. My next path is getting more info about why these treatments for MAI...I will be talking more with some infectious disease doctors. Thank you, I will let you know what I find. There is a lot of support here being connected to so many who understand what you may be going through.

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@1478 Hi Cheryl, I'm 2 months away from turning 65. I'm Asian and grew up in northern China. I have lived in Wisconsin for over 30 years. I started to experience frequent coughing and excess mucus about 3-4 years after I arrived in the Midwest in 1985. Until 3 years ago, it was always believed that all my symptoms were due to allergies. I do have allergies to a lot of things: Tree pollen, grass, ragweed, mold, dust mite, bee venom, etc. I went through a 5-year allergy shot treatment. The symptoms seemed to diminish for a while. Then 3 years ago, out of the blue, I coughed up a large amount of blood. Subsequently, I was diagnosed with bronchiectasis and MAC infection. I have never smoked. I was very thin when I was younger. Nowadays, my BMI is little over 20. Not overweight, but not overly thin anymore. I don't have illnesses that could weaken my immune system. I'm not working in medical field. I think my bronchiectasis could have been caused by infection by TB virus when I was a child. The doctors came to that conclusion (of my being infected by TB virus, not of my brochiectasis) when my skin test for TB came back negative yet I have never had TB. That was many years before my bronchiectasis diagnosis. Chest X-rays back then show that there is scarring in my lungs. I believe the combination of bronchiectasis and allergies have led to excess mucus, which in turn has led to MAC infection. I'm not on any antibiotics for MAC that many on this site are taking. I have no breathing problems. Excess mucus is the only big problem. It leads to coughing when my throat is irritated constantly by it.

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@ronaf

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.

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This is Sharon. I did have have my immune system tested and I have a healthy immune system, yet have MAc. I have started taking the Jarrow Probiotic recommended by the Jewish Hospital (thank you to the person who posted about this). Those 25 billion probiotic soldiers are really doing good work! Already I have less heart burn and sleeping better. I am beathing easier also.

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@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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Hello pink tower, I am Carla I also take the big 3 medications every day. I take Clarithromycin 500 mg 2times a day I also take Rifampin 300 mg twice a day. I was just taken off the Ethambutol due to having vision problem with it plus having extreme breathing problems nearly passing out at Tim’s. I have been on these for 8 full months and off the last one this past month.
I also have RLS (restless leg syndrome) and also fibromyalgia. I have been on medication for RLS for at least 20 years now and on pain medications for the fibromyalgia for at least14 years now.
Have anyone else had problems with the 3 antibiotics to treat MAC and if so what where your side effects. I still have swollen lips but I guess it is not bad enough to take me off the other 2 antibiotics? I also use a combivent inhailer for when I need to clear my congestion or when I get real short of breat due to the COPD and the broncitious

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@ronaf

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.

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Thank you for re-posting this. I'm getting this for my mother, she should be starting antibiotics regiment for the 1st time this week. Great information.

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