Curiosity Questions

@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First, Lady Windermere's Syndrome seems like somewhat of an outdated theory to me now, as we learn more about Bronchiectasis and are discovering more of it around the world.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?

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?

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

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.

I even did a similar post here before, but found no evidence in the literature.
I even have a widened trachea and widened main bronchii..
But apparently coughing does not contribute to this widening.
If it did, they would have found it

causes of BE in Europe in this order:
idiopathic
post infective
COPD
asthma
TBC
immuno
ciliary dysk.
ABPA
rheumatoid arthritis
conn. tissue
GERD
NTM

Hi friends -
I’ve seen a couple of reference to bird-related issues as possible causes of MAC. I have a pet bird. Might that be the cause of my continuing infection? Thanks for any guidance!
Jill

Hi Jill - Don't panic, but do think this through.
MAC is Mycobacteria Avium Complex, meaning the source of the bacteria is from birds - but not necessarily yours.

Bird droppings can be the source of a lot of pathogens, including M. avium, histoplasmosis and others. Many years ago, our state epidemiologist, Dr Mike Osterholm, was investigating an outbreak of histoplasmosis. I don't remember the details, but somehow he ended up at our home, testing our parakeets and interviewing us.

We were very surprised when he suggested that we consider rehoming our birds, not due to infection risk, but because of our allergies - we were young and kind of shrugged it off. We did take extra precautions as far as cleaning the cages outdoors, daily vacuuming up seeds & feathers - but the birds stayed.

Fast forward 8 years - our young daughters were suffering repeated respiratory & ear infections. The first recommendations by the ENT were - remove carpeting, remove all stuffed toys from the bedroom, and rehome our birds. The allergist & pediatrician concurred, saying the dander & mite particles from the birds were a respiratory irritant. Bye, bye birdies.
Our kids weren't cured, but we all had fewer respiratory and allergy issues.

All four of us developed asthma of varying severity over the years. And now I wonder if maybe that exposure might have something to do with developing bronchiectasis - though my MAC came many years later, after exposure to soil heavily contaminated by feral chickens and many songbirds. I still feed "my birds" - outdoors - and glove up to clean the feeders. If there is a lot of seed to clean out, I add a mask.

So, you might want to consult with your Pulmonologist and/or an Infectious Disease or Epidemiology expert.

I too live in the desert sw and after years of many bouts of pneumonia got BE then Mac. I fit the profile exactly for the older Caucasian woman. My guess is I acquired it either gardening or volunteering around horses. Very dusty! Hang in there you can get better!

Thank you, Sue. I feel so silly - I never even made a connection between the name of the complex and physical birds. There is indeed a lot of dust and dander that come with birds. Although it breaks my heart, I am finding Lola a new home as we speak. I can’t thank you and this forum enough.
Kind regards,
Jill

This post has answered my question as to why I have this thing. I raised birds in the house. They did not live in cages; they lived freely in the living room. There were cages they slept in, but the doors were never closed. When we got dogs, we ended up closing the living room with a halfway swing gate, and we stopped using the room (Fear of dogs realizing what was on the other side of the gates). I also have asthma and a history of bronchitis at least twice a year for 40 years. Before that, I am sure it was more often.

I was wondering about this. My Mom is a master gardner and has worked our property for about 20 years. I didn't work in the garden except to pick the vegetables. I didn't even mow the yard because of my asthma. Between the birds, the last of which were rehomed 2 years ago, and asthma/bronchitis, I guess I was asking for it. Living with the birds was not a good thing. We would vacuum and empty the cage trays, but the furniture was covered in dander. It became unusable for people towards the end.