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?

I also work in the medical field. We are all struggling to get those answers and to try to encourage more research, better reporting and getting the word out there. It seems no one is pushing hard enough for progress. I did speak with a researcher in Texas and was told they were having trouble getting funding to proceed with more studies. Research includes Inhaled Nitric Oxide another compound that makes the MAI cell wall more vunerable to antibiotics etc but it takes money and time to get the studies running and through the FDA. We need a famous spokes person!!!

Liked by oremuslepidus

@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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I’m so glad u posted this info about the big 3….this is the first time I have heard this….sorry for butting in, but I follow your info….wonder how many other people didn’t know this…just saying✌️

@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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I really appreciated the post about reinvention. Thank you so much!
I retried the Toby in a new nebulizer and actually got to 15 treatment which was so much better than before( 4 treatments). But I had to stop as I had trouble breathing. Next they will try me on Amikacin. It takes about 2 weeks or so to order it. I read somewhere that one person could only tolerate it every other day.

@pinktower

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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Shari,
I saw my RA Doctor Friday he prescribed minocycline for me. He thought it was worth trying after I told him all I’ve read on this blog and your experience. I have to have lung scans every 6 months also have contact with the infectious decease doctor. Thanks so much for your input I’ll keep you posted.

New to group….I have been diagnosed with mild bronchiectasis-also acid reflux….this has been ongoing for last 10 years. Gave up smoking 35 years ago. Worked in dental field, also in medical field. Had every childhood diseases known- born in England just after war…damp climate. Began with pancreatic issues five years ago and now after several tests I have been diagnosed with a mutant gene for Cystic Fibrosis. I don't have tCF just the gene…..perhaps this might explain some of my long term problems….always wondered why "mild" bronchiectasis caused such amounts of flem.

Welcome to the group! I find that certain foods cause the flood of phlegm…experiment and find out what your usual suspects are…

@jensfcv

New to group….I have been diagnosed with mild bronchiectasis-also acid reflux….this has been ongoing for last 10 years. Gave up smoking 35 years ago. Worked in dental field, also in medical field. Had every childhood diseases known- born in England just after war…damp climate. Began with pancreatic issues five years ago and now after several tests I have been diagnosed with a mutant gene for Cystic Fibrosis. I don't have tCF just the gene…..perhaps this might explain some of my long term problems….always wondered why "mild" bronchiectasis caused such amounts of flem.

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Welcome, @jensfcv. I'm bringing @lindam272 who has atypical cystic fibrosis as well as MAC.
Jen, how do you manage the phlegm?

@jensfcv

New to group….I have been diagnosed with mild bronchiectasis-also acid reflux….this has been ongoing for last 10 years. Gave up smoking 35 years ago. Worked in dental field, also in medical field. Had every childhood diseases known- born in England just after war…damp climate. Began with pancreatic issues five years ago and now after several tests I have been diagnosed with a mutant gene for Cystic Fibrosis. I don't have tCF just the gene…..perhaps this might explain some of my long term problems….always wondered why "mild" bronchiectasis caused such amounts of flem.

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Good morning….I am not managing the phlegm very well at the moment. I take a Zyrtec every p.m. to help control my sinus drainage as I have had major surgery and now have zero turbinates- so steady stream of fluid. I stay away from milk products and that does seem to help. For several years I was sleeping on incline related to reflex problems however as I aged it began to really put pressure on my lower back so we have removed the incline at the moment. I would be very happy for any suggestions. My usual plan is to arise two hours prior to any appointment and cough the majority of the phlegm up!!! Warm black coffee is a help!
Regards, J

I submitted 2 sputum samples prior to starting the meds, I think I only got stuff from my throat. One was neg and the other was positive. I truly believe there is some of the MAC that lives in my throat. I had a little less of it about a month after starting the antibiotics but now it is hard to tell since I had some cold symptoms recently. I will wait to see once that clears up if I have less than prior to the meds.

Hi @kiemen, I also had to do sputums and had none in my chest. I think MAC is in our throat/mouth becauce that is where mine was from and it was positive for MAC. They have so much to learn about these bugs.

@jensfcv…After what I assume was sinus surgery, are you allowed to use nasal lavage with saline? I find that it cuts down on nasal mucus.
You might want to try an acid reduction diet to see if that helps.

Liked by jensfcv

@heathert

Hi @kiemen, I also had to do sputums and had none in my chest. I think MAC is in our throat/mouth becauce that is where mine was from and it was positive for MAC. They have so much to learn about these bugs.

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I saw my MD and asked him about the Nitric Oxide. He said, he thought the treatment would be very expensive. I will be interested to see how this continues to progress.

@egayle187

@jensfcv…After what I assume was sinus surgery, are you allowed to use nasal lavage with saline? I find that it cuts down on nasal mucus.
You might want to try an acid reduction diet to see if that helps.

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Thank you I am starting with nasal lavage again especially as we are in the pine pollen season. Have been doing bland food for a while since I have pancreas issues.

@jensfcv

New to group….I have been diagnosed with mild bronchiectasis-also acid reflux….this has been ongoing for last 10 years. Gave up smoking 35 years ago. Worked in dental field, also in medical field. Had every childhood diseases known- born in England just after war…damp climate. Began with pancreatic issues five years ago and now after several tests I have been diagnosed with a mutant gene for Cystic Fibrosis. I don't have tCF just the gene…..perhaps this might explain some of my long term problems….always wondered why "mild" bronchiectasis caused such amounts of flem.

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As I mentioned below, there's certain foods causing your phlegm…start by noting what you ate the night before a particularly bad attack and go from there.
As for the bed, only an adjustable will give you the relief without the backache.

@jensfcv

New to group….I have been diagnosed with mild bronchiectasis-also acid reflux….this has been ongoing for last 10 years. Gave up smoking 35 years ago. Worked in dental field, also in medical field. Had every childhood diseases known- born in England just after war…damp climate. Began with pancreatic issues five years ago and now after several tests I have been diagnosed with a mutant gene for Cystic Fibrosis. I don't have tCF just the gene…..perhaps this might explain some of my long term problems….always wondered why "mild" bronchiectasis caused such amounts of flem.

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@jensfcv – Welcome to the group! I have Bronchiectasis, MAC and atypical CF. I don't have the gene but I tested positive on multiple sweat tests. I have another one coming up in April so we will see what happens with that. I do breathing treatments with 7% hyper saline every morning and evening beginning with a couple of puffs of Albuterol to open the airways, the saline treatment to thin the mucous, then the Aerobika to pull it up and out. It takes about 30-40 minutes. It works pretty good. If I have a runny nose in the morning, I take a Sudafed to try and cut down on the drainage. I rarely battle with phlegm during the day; however, there are some nights when I go to bed that I'm coughing up more that came out of nowhere. Probably caused by something I ate but I haven't put much thought into what causes what. I just eat what I want. I notice that when I do yoga and lay down on the mat, I cough up phlegm even when I do my breathing treatment before I go. It's pretty embarrassing because everyone is all "zenned" out and I'm coughing my brains out. I usually have to tip toe out and go to the ladies room to cough up my stuff. I'm not sure if the Bronchiectasis is causing most of the phlegm or the CF. It's a mystery… Linda

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