1. < MAC & Bronchiectasis

Curiosity Questions

Posted by lorrie48 @lorrie48, 1 day ago

As I try to learn more about how I might have developed bronchiecstasis and contracted MAC, I'm puzzled by two findings. Perhaps someone here has some input.
First, MAC is often referred to as Lindy Windermere's Syndrome because it affects a disproportionate number of older Caucasian women who might typically suppress their cough. Does anyone understand the science?
Second, MAC is picked up from dust, soil, or water. My cardiologist was surprised that I, who live in the Desert Southwest, was diagnosed with MAC. He said it more often shows up in the Northeast. Does your own experience support this?

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Mentor
Sue, Volunteer Mentor | @sueinmn | 23 hours ago

@lorrie48 I really love answering this question.
First, Lady Windermere's Syndrome seems like somewhat of an outdated theory to me now, as we learn more about Bronchiectasis and are discovering more of it around the world. My theory is, these tended to be older, somewhat wealthy patients with access to the best (in their time) health care. Add to that genteel, doing what ladies did - taking care of indoor and outdoor plants, often in humid greenhouses of conservatories.

Much of the rest of the world just lived with it, probably quite often no medical care. Before x-rays, its existence was a mere guess. Even with x-rays, what was causing the lung problem was not always clear. It was the development and lately, the availability of the CT scan that really accelerated the diagnosis. So probably Bronchiectasis was always there, but nobody knew how widespread it might be, until probably the last 10-15 years.

Now the theories of cause include not only the genetics previously believed, but chronic asthma, repeated bronchial infections or pneumonia, and exposure to harmful chemicals or bad air quality.

As far as NMT/MAC are concerned, the bacteria are everywhere. So, if you are predisposed to it, by virtue of having Bronchiectasis, COPD or Cystic Fibrosis, you can catch it anywhere. Perhaps in some area, due to soil content and how mobile the soil is, or concentration in certain water sources, it's probably more prevalent. Other known sources of concentrated NTM are hot, humid places like indoor hot tubs (and possibly steam rooms or hot yoga rooms?), swamps and and hot water tanks that are not kept at a sufficient temperature to kill the bacteria.

Mine infection likely came either from years of gardening, or from direct exposure to heavily contaminated soil (where feral chickens lived) or hiking in desert dust in the Southwest.

If you are really curious about the dispersion of NTM/MAC or where areas of more bronchiectasis are being identified, try searching using scholar.google.com. There is a lot of new research going on. I compare it to when Black Lung was identified in coal miners, or Asbestosis in vermiculite miners and insulation workers - many more cases are found when the doctors know what to look for.

Do you have a pulmonologist who is specifically familiar with NTM?

REPLY
2 replies
lorrie48 | @lorrie48 | 23 hours ago
In reply to @sueinmn "@lorrie48 I really love answering this question. First, Lady Windermere's Syndrome seems like somewhat of an..." + (show)
@sueinmn

@lorrie48 I really love answering this question.
First, Lady Windermere's Syndrome seems like somewhat of an outdated theory to me now, as we learn more about Bronchiectasis and are discovering more of it around the world. My theory is, these tended to be older, somewhat wealthy patients with access to the best (in their time) health care. Add to that genteel, doing what ladies did - taking care of indoor and outdoor plants, often in humid greenhouses of conservatories.

Much of the rest of the world just lived with it, probably quite often no medical care. Before x-rays, its existence was a mere guess. Even with x-rays, what was causing the lung problem was not always clear. It was the development and lately, the availability of the CT scan that really accelerated the diagnosis. So probably Bronchiectasis was always there, but nobody knew how widespread it might be, until probably the last 10-15 years.

Now the theories of cause include not only the genetics previously believed, but chronic asthma, repeated bronchial infections or pneumonia, and exposure to harmful chemicals or bad air quality.

As far as NMT/MAC are concerned, the bacteria are everywhere. So, if you are predisposed to it, by virtue of having Bronchiectasis, COPD or Cystic Fibrosis, you can catch it anywhere. Perhaps in some area, due to soil content and how mobile the soil is, or concentration in certain water sources, it's probably more prevalent. Other known sources of concentrated NTM are hot, humid places like indoor hot tubs (and possibly steam rooms or hot yoga rooms?), swamps and and hot water tanks that are not kept at a sufficient temperature to kill the bacteria.

Mine infection likely came either from years of gardening, or from direct exposure to heavily contaminated soil (where feral chickens lived) or hiking in desert dust in the Southwest.

If you are really curious about the dispersion of NTM/MAC or where areas of more bronchiectasis are being identified, try searching using scholar.google.com. There is a lot of new research going on. I compare it to when Black Lung was identified in coal miners, or Asbestosis in vermiculite miners and insulation workers - many more cases are found when the doctors know what to look for.

Do you have a pulmonologist who is specifically familiar with NTM?

Jump to this post

This is a great answer. Thank you! I'm not sure just how familiar my pulmonologist is with NTM, although I've had no reason to doubt what and how much he knows. That said, having had such helpful feedback from patients on this page, I'm planning to go to my next appointment in three weeks with a long list of new questions. 🙂

I suppose my MAC could have come from hiking in desert dust (I had valley fever 40 years ago) or from clearing woods and burning brush piles in MS. Frustrating, isn't it, to do the good thing by being active outdoors and then to get sick because you did?

REPLY
blm1007blm1007 | @blm1007blm1007 | 9 hours ago
In reply to @sueinmn "@lorrie48 I really love answering this question. First, Lady Windermere's Syndrome seems like somewhat of an..." + (show)
@sueinmn

@lorrie48 I really love answering this question.
First, Lady Windermere's Syndrome seems like somewhat of an outdated theory to me now, as we learn more about Bronchiectasis and are discovering more of it around the world. My theory is, these tended to be older, somewhat wealthy patients with access to the best (in their time) health care. Add to that genteel, doing what ladies did - taking care of indoor and outdoor plants, often in humid greenhouses of conservatories.

Much of the rest of the world just lived with it, probably quite often no medical care. Before x-rays, its existence was a mere guess. Even with x-rays, what was causing the lung problem was not always clear. It was the development and lately, the availability of the CT scan that really accelerated the diagnosis. So probably Bronchiectasis was always there, but nobody knew how widespread it might be, until probably the last 10-15 years.

Now the theories of cause include not only the genetics previously believed, but chronic asthma, repeated bronchial infections or pneumonia, and exposure to harmful chemicals or bad air quality.

As far as NMT/MAC are concerned, the bacteria are everywhere. So, if you are predisposed to it, by virtue of having Bronchiectasis, COPD or Cystic Fibrosis, you can catch it anywhere. Perhaps in some area, due to soil content and how mobile the soil is, or concentration in certain water sources, it's probably more prevalent. Other known sources of concentrated NTM are hot, humid places like indoor hot tubs (and possibly steam rooms or hot yoga rooms?), swamps and and hot water tanks that are not kept at a sufficient temperature to kill the bacteria.

Mine infection likely came either from years of gardening, or from direct exposure to heavily contaminated soil (where feral chickens lived) or hiking in desert dust in the Southwest.

If you are really curious about the dispersion of NTM/MAC or where areas of more bronchiectasis are being identified, try searching using scholar.google.com. There is a lot of new research going on. I compare it to when Black Lung was identified in coal miners, or Asbestosis in vermiculite miners and insulation workers - many more cases are found when the doctors know what to look for.

Do you have a pulmonologist who is specifically familiar with NTM?

Jump to this post

Hello Again Sue -
Another generous sharing of your time. Great explanation as well.
Yes, all for me as a possibility as to the how and why: two severe pneumonias and one possible time of walking pneumonia, cleaning out bird houses (nests etc.), dealing with pool chemicals for 50 years, dealing with peat moss as a kid for Mother's plantings and as an adult for my own yard, working with and turning soil, blowing dry leaves, hot air gas home heating that is drying and the worst one...HVAC air filter in the attic that was allowed to be caked with house remodeling dust due to construction worker not abiding by my request: "Do not turn on the air conditioning" (common sense told me to make that request) and then my not thinking soon enough to have the filter checked and therefore changed out after the remodeling. I should have removed the air condition breaker!
In other words the possibility of why and how Bronchiectasis/MAC...living life and learning as we go.
Barbara

REPLY
brittany123 | @brittany123 | 5 hours ago

As to how one gets bronchiectasis, I was told that a history of whooping cough is found in many cases of bronchiectasis. I had whooping cough at age 14, and also suffered bad coughs every time I had a common cold throughout my life. In the years just prior to diagnosis of BE I had flu, bronchitis and walking pneumonia. All that coughing adds up I guess, leading to weakening of bronchial tubes.

REPLY
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