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?

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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Thank you!! this is more great information. Your story confirms the direction I’m going in my study, which is very similar to mine and my mother’s. My niece has her Master’s in Epidemiology and we have been going through the TB history with the connection to MAC/MAI The other direction is hormones, or the changes with menopause. We already know the transmitters from the pituitary via Hypothalamus glands help control stomach acids and histamines and more. Lots more to go….This is all helps.

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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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I hope it helps. I haven’t needed any heartburn medication since starting it.

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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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@carla1196, There is what they call ‘silent acid reflux’ because it has no symptoms. It is possible that you are inhaling stomach acid when you sleep at night. That, doctors believe is the cause of bronchiectasis and/or mac infection. I personally do not think testing for it is nessessary, you could try taking the precautions as if you knew you had it. The biggie is not eating or drinking anything three hours before bedtime. Especially alcohol, and only small sips of water. Avoid or limit highly acidic foods like tomatoe sauce, lemonade, alcohol, grapefruit, etc. so that the esophagus can heal over. You can take a prilosec 30 mins prior to eating to lower the acid level in your stomach. Can raise the headboard of your bed higher so that gravity keeps your stomach acid in the stomach. I sleep on two pillows to raise my head although they say that is not good enough. But, I breath better with a raised head. You can Google Silent Acid Reflux to learn more about it.

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@1478, Hi there. Those are good questions. I have been on this site since 2016, and since I became a mentor, I have documented many things. One thing that stands out more than the others is that people working in the medical field or work in the public school system tend to get mac. About 85% of the women on this site infected with mac were nurses for many years as well as school teachers. There are two common denominators here: one is exposure to many people and their germs & illness, the other is the use of commercial grade cleansers that may be creating super-bugs in theses institutions.

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@windwalker

@1478, Hi there. Those are good questions. I have been on this site since 2016, and since I became a mentor, I have documented many things. One thing that stands out more than the others is that people working in the medical field or work in the public school system tend to get mac. About 85% of the women on this site infected with mac were nurses for many years as well as school teachers. There are two common denominators here: one is exposure to many people and their germs & illness, the other is the use of commercial grade cleansers that may be creating super-bugs in theses institutions.

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You hit the nail on the head!! I’m thankful for your insight and experience since 2016. I have learned so much and have been able to pass it to my mom. She is doing well, but has a hard time reading and gathering information, so I’m trying to help out. I’m also trying to understand because I have the same precursors to getting this bacteria. It is great to see so many supporting each other here. God Bless you.

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@windwalker

@1478, Hi there. Those are good questions. I have been on this site since 2016, and since I became a mentor, I have documented many things. One thing that stands out more than the others is that people working in the medical field or work in the public school system tend to get mac. About 85% of the women on this site infected with mac were nurses for many years as well as school teachers. There are two common denominators here: one is exposure to many people and their germs & illness, the other is the use of commercial grade cleansers that may be creating super-bugs in theses institutions.

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@1478, Cheryl, your mother is blessed to have you advocating for her. It really is hard for older people, (and some younger folks) especially if they are not comfortable using computers and Google, or just feel too sick to get online. Like you said, it is good for you to be prepared in the event that you are predisposed to catching it. If you have not already, you can read how to ‘Prevent Reinfection’ on this site. These tips can help keep you safe as well. @colleenyoung , can you please send Cheryl the link about reinfection?

Liked by 1478

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@windwalker

@1478, Hi there. Those are good questions. I have been on this site since 2016, and since I became a mentor, I have documented many things. One thing that stands out more than the others is that people working in the medical field or work in the public school system tend to get mac. About 85% of the women on this site infected with mac were nurses for many years as well as school teachers. There are two common denominators here: one is exposure to many people and their germs & illness, the other is the use of commercial grade cleansers that may be creating super-bugs in theses institutions.

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Thanks for the tag @windwalker

Cheryl, here are discussion in the group about re-infection and prevention:
– Possible causes of MAC/MAI Re-Infections https://connect.mayoclinic.org/discussion/possible-causes-of-macmai-re-infections
– How To Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/

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@colleenyoung , Thank you, Colleen!

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@windwalker

@1478, Hi there. Those are good questions. I have been on this site since 2016, and since I became a mentor, I have documented many things. One thing that stands out more than the others is that people working in the medical field or work in the public school system tend to get mac. About 85% of the women on this site infected with mac were nurses for many years as well as school teachers. There are two common denominators here: one is exposure to many people and their germs & illness, the other is the use of commercial grade cleansers that may be creating super-bugs in theses institutions.

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@1478, Cheryl, did you get a chance to read the links that Colleen posted for you?

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@windwalker

@1478, Hi there. Those are good questions. I have been on this site since 2016, and since I became a mentor, I have documented many things. One thing that stands out more than the others is that people working in the medical field or work in the public school system tend to get mac. About 85% of the women on this site infected with mac were nurses for many years as well as school teachers. There are two common denominators here: one is exposure to many people and their germs & illness, the other is the use of commercial grade cleansers that may be creating super-bugs in theses institutions.

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Thank you so much!! All this knowledge brings wisdom.

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