My new pulmonologist told me Bronchoiectasis causes MAC

Posted by doberdoo @doberdoo, 6 days ago

My new pulmonologist told me Bronchoiectasis causes MAC. The prior pulmonologists and Infectious Disease doctors all told me it is caused by SOIL. I am an avid gardener and know I have inhaled cactus/succulent soil many many times. Is he correct? I thought they were two different diseases or that MAC progressed to Bronchoiectasis. Can someone help me understand?

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Won't someone please help me understand this question. See lots of comments on other posts, but not mine.

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@doberdoo This is a "which came first" scenario...

Bronchiectasis is a disease where the small airways in the lungs become stretched and stiff, so your lungs do not work as well. There are MANY opinions as to the cause - chronic asthma, repeated pneumonia or bronchitis, serious lung infections, exposure to irritants - either once in a large dose (like an anhydrous ammonia leak) or over time in many small doses (irritating dusts or minerals.) There is some evidence that a very low Body Mass Index (BMI) GERD (Reflux disorder) and some genetic anomalies also make one more susceptible to Bronchectasis.

MAC or Mycobacteria Avium Complex is an infection. NTM or Non-tubercular Mycobacteria is the generic name for Mycobacteria Avium, M. Abscessus, M. Fortuitum and a number of others - these are not contagious. Then there are Tuberculosis and Leprosy, caused by other Mycobacteria, TB is quite contagious, Leprosy can be transmitted through long, close contact. NTM IS in the soil...and the air...and in water...it's everywhere. People with already compromised lungs are susceptible to it, but it is not a problem for most people with healthy lungs.

So, if you have Asthma, Cystic Fibrosis, COPD or other diseases that affect the function of your lungs, your are susceptible to infection by NTM. Likewise if you have a compromised immune system, take immuno-suppressing drugs, smoke or vape, you are more susceptible. Finally, IF you are exposed to a lot of NTM over a long period of time, you can become susceptible, especially if you get a bad cold or other respiratory infection.

Here's the bad news for professional or serious amateur gardeners - certain soil types and peat moss harbor a huge amount of NTM. Desert (volcanic) type soils seem to be one of those with a lot of NTM, and worse, we tend to work with it dry, so a lot of particles are flying around. But Northern gardeners are not "off the hook" either - warm humid environments like the greenhouse, where pretty plants are potted, watered and misted, usually have peat in the potting mix, and the NTM spores suspend in the warm moist air to breathe in.

My personal history is on of bronchitis and pneumonia reaching back into childhood with asthma diagnosed as an adult (although I probably had it much longer.) The I became an avid gardener and hiker, so I was exposed to NTM in numerous environments. After I retired, I also begasn to garden in South Texas, sharing my little plot with feral chickens and migrating birds, all of whom I fed.

About nine years ago, I came down with a bad case of bronchitis and a chronic asthma attack that never went away. After two years of non-stop coughing and declining health, I was diagnosed with Bronchiectasis, MAC and Pseudomonas. I will never know which came first - but it really doesn't matter. Learning to live my best life in spite of it is my goal.

Where do you think your journey started? Was it previous conditions that disposed you, or your life in the garden?

Can you keep on gardening? Many of us in this support group do! We take some precautions like masking, keeping garden shoes and clothes out of the house, and having others do the dusty tasks while we stay away. I water soil thoroughly before I work in the garden to minimize dust, have mulch or compost laid, raked and watered in by a helper, and buy and prewet my potting soils (for many years I mixed my own, which creates a lot of exposure.)

Have you continued to garden since your diagnosis?

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@sueinmn

@doberdoo This is a "which came first" scenario...

Bronchiectasis is a disease where the small airways in the lungs become stretched and stiff, so your lungs do not work as well. There are MANY opinions as to the cause - chronic asthma, repeated pneumonia or bronchitis, serious lung infections, exposure to irritants - either once in a large dose (like an anhydrous ammonia leak) or over time in many small doses (irritating dusts or minerals.) There is some evidence that a very low Body Mass Index (BMI) GERD (Reflux disorder) and some genetic anomalies also make one more susceptible to Bronchectasis.

MAC or Mycobacteria Avium Complex is an infection. NTM or Non-tubercular Mycobacteria is the generic name for Mycobacteria Avium, M. Abscessus, M. Fortuitum and a number of others - these are not contagious. Then there are Tuberculosis and Leprosy, caused by other Mycobacteria, TB is quite contagious, Leprosy can be transmitted through long, close contact. NTM IS in the soil...and the air...and in water...it's everywhere. People with already compromised lungs are susceptible to it, but it is not a problem for most people with healthy lungs.

So, if you have Asthma, Cystic Fibrosis, COPD or other diseases that affect the function of your lungs, your are susceptible to infection by NTM. Likewise if you have a compromised immune system, take immuno-suppressing drugs, smoke or vape, you are more susceptible. Finally, IF you are exposed to a lot of NTM over a long period of time, you can become susceptible, especially if you get a bad cold or other respiratory infection.

Here's the bad news for professional or serious amateur gardeners - certain soil types and peat moss harbor a huge amount of NTM. Desert (volcanic) type soils seem to be one of those with a lot of NTM, and worse, we tend to work with it dry, so a lot of particles are flying around. But Northern gardeners are not "off the hook" either - warm humid environments like the greenhouse, where pretty plants are potted, watered and misted, usually have peat in the potting mix, and the NTM spores suspend in the warm moist air to breathe in.

My personal history is on of bronchitis and pneumonia reaching back into childhood with asthma diagnosed as an adult (although I probably had it much longer.) The I became an avid gardener and hiker, so I was exposed to NTM in numerous environments. After I retired, I also begasn to garden in South Texas, sharing my little plot with feral chickens and migrating birds, all of whom I fed.

About nine years ago, I came down with a bad case of bronchitis and a chronic asthma attack that never went away. After two years of non-stop coughing and declining health, I was diagnosed with Bronchiectasis, MAC and Pseudomonas. I will never know which came first - but it really doesn't matter. Learning to live my best life in spite of it is my goal.

Where do you think your journey started? Was it previous conditions that disposed you, or your life in the garden?

Can you keep on gardening? Many of us in this support group do! We take some precautions like masking, keeping garden shoes and clothes out of the house, and having others do the dusty tasks while we stay away. I water soil thoroughly before I work in the garden to minimize dust, have mulch or compost laid, raked and watered in by a helper, and buy and prewet my potting soils (for many years I mixed my own, which creates a lot of exposure.)

Have you continued to garden since your diagnosis?

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Thank you for your response. I am very sorry to hear your own story and all that you have been through. I wish the best for continued success in beating these horrible diseases.

So, I am right in thinking this pulmonologist knows nothing about MAC and I must find a new one. I put in quotes what he said that Bronchectasis causes MAC. As you so clearly explained, Bronchectasis is a disease and MAC starts as viral bacteria in the soil. My instinct is to file a complaint against him with the hospital. He is a danger to me and future patients. What do you advise regarding him?? Or anyone else who might read this? Would you report him?

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@doberdoo

Thank you for your response. I am very sorry to hear your own story and all that you have been through. I wish the best for continued success in beating these horrible diseases.

So, I am right in thinking this pulmonologist knows nothing about MAC and I must find a new one. I put in quotes what he said that Bronchectasis causes MAC. As you so clearly explained, Bronchectasis is a disease and MAC starts as viral bacteria in the soil. My instinct is to file a complaint against him with the hospital. He is a danger to me and future patients. What do you advise regarding him?? Or anyone else who might read this? Would you report him?

Jump to this post

No, I don't think a complaint is warranted. I think you are right that the pulmonologist may be inexperienced with MAC, but many are.

I used this example yesterday, but it still feels right. An auto mechanic may be really good at working on Chevys, Toyotas and Jeeps, but he might not have a clue how to repair a Maybach (very rare) or a Saab (rare.)

And so a pulmonologist may be very good at treating and managing asthma or COPD (50 million people or more in the US have these) but not know about Bronchiectasis (somewhat rare - under a million people) or MAC (pretty rare - less than 500,000.) These conditions may have been mentioned in school, but not rally taught.

As I said in my reply above, we don't really know which came first for any one person - it's kind of the "chicken and egg" situation. If your new pulmonologist has only ever seen people with both MAC and Bronchiectasis, he may never have teased out which came first. And honestly, since they most often occur together, it doesn't really make a difference in how it will be treated or managed.

Would I look for a new doctor? Probably - unless I could go back to the previous one.

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the (distant) bronchii are widened in BE and often contain mucus.
Bacteria (other than MAC) can grow in the mucus where the immune system cannot
reach them so well.
That's the "exacerbation" risk and why many recomment airway clearance.

MAC on the other hand may firstly infect and cause or contribute to BE

(as I understand it from my readings)

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Pseudomonas and MAC are everywhere and yet the vast majority of people do not get infected with them. Bronchiectasis makes you prone to get infected with either or both (plus many other things). In that sense the Bronchiectasis is the reason you developed MAC. That is probably what the Dr was trying to say. Repeated exposure from gardening and picking up MAC that developed into BE is probably possible but pretty rare I would think. To put it simply Bronchiectasis makes one very prone to airway infections and one has to take great care to keep airways free of mucus, keep immunity strong etc etc.

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In all the tests including HRCT lungs, broncoscopy, hour long Lung Spirometry testing, etc., I have never been diagnosed with Bronchiestasis. I can see that MAC would make me develop it, but not vice versa. Never had any symptoms either.

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I agree with Sue and don’t believe a complaint is warranted.
Agree with Irene’s statement:

“Bronchiectasis makes you prone to get infected with either or both (plus many other things). In that sense the Bronchiectasis is the reason you developed MAC. That is probably what the Dr was trying to say.”

I have bronchiectasis without MAC. I asked my very reasonable pulmonologist in Penn’s Bronchiectasis and MAC lung clinic about gardening. He told me he doesn’t think he should tell patients not to garden when there isn’t direct evidence at this point. However, he cautioned me to be careful if I do and wear a mask and gloves. Sue has given additional tips that I believe he would agree to.

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@pacathy

I agree with Sue and don’t believe a complaint is warranted.
Agree with Irene’s statement:

“Bronchiectasis makes you prone to get infected with either or both (plus many other things). In that sense the Bronchiectasis is the reason you developed MAC. That is probably what the Dr was trying to say.”

I have bronchiectasis without MAC. I asked my very reasonable pulmonologist in Penn’s Bronchiectasis and MAC lung clinic about gardening. He told me he doesn’t think he should tell patients not to garden when there isn’t direct evidence at this point. However, he cautioned me to be careful if I do and wear a mask and gloves. Sue has given additional tips that I believe he would agree to.

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Thank you for your input but as I have already stated, through many, many tests, including broncoscope, pulmonologists and infectious disease specialists, I HAD NEVER BEEN DIAGNOSED WITH BRONCHIECTASIS. While I agree a complaint is fruitless I strongly disagree with your/Irene's statement: “Bronchiectasis makes you prone to get infected with either or both (plus many other things). In that sense the Bronchiectasis is the reason you developed MAC." In my situation it WAS/IS the opposite. My MAC has evolved into Bronchiectasis. I just want others to be aware this could be the course of MAC complications.

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I missed the post from you further in the thread that said you didn’t have bronchiectasis initially. It’s good to spread the word that it can go the other way. I don’t think many here will be surprised since pneumonias and infections of various types are commonly precursors to bronchiectasis.

I’m really sorry you’re going thru this. It’s a scary diagnosis, but many here manage it and have busy and fulfilling lives. I think you’ll find a lot of valuable tips for dealing with it here. I wish you the best.

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