1. < MAC & Bronchiectasis

Question regarding symptoms

Posted by Jen_b @jenblalock, Dec 3, 2017

Hi all, I'm wondering if anyone else with bronchiectasis and/or cavitary lesions has this symptom or feels this way. I had MAC which was successfully treated and I have been off meds since April 2017. I also have mild bronchiectasis and two cavitary lesions that remain stable. For several months after I got off meds I felt really good but for the past month and a half I get afternoon fatigue, don't feel well and have a dry cough. No night sweats or fever.
If I take ibuprofen the cough clears up and I feel better. I don't really know why ibuprofen would cause my cough to clear up and my primary doc seems confused by this also. I've had a chest Xray which is stable since last Xray and my primary doctor only hears a bit of wheezing which is normal for me. Could it be as simple as allergies? Of course I'm paranoid because of previous MAC infection.

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ling123 | @ling123 | Dec 22, 2017
In reply to @ling123 "@jkiemen I'm not a doctor. But I have read a lot on line after I was..." + (show)
@ling123

@jkiemen I'm not a doctor. But I have read a lot on line after I was diagnosed with bronchiectasis and MAC. Since the bacteria are found in soil and water, I assume the ones we get from the soil would most likely by inhaled and the ones from the water would likely be either inhaled through stream/vapor, such as when we take a shower, or aspirated from the stomach for people with GERD. These bacteria are prevalent. Most people have them in their systems. Only the unlucky few get infections from them. And we are some of the latter. So far, there is no consensus as to why some of us get the infections and others are not bothered by these bacteria. But one factor seems to come up a lot: those who already have pre-existing lung diseases and those who have weakened immune systems tend to be infected a lot more easily than people who are otherwise health. I believe I got the MAC infection because I have bronchiectasis.

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@tdrell That maybe. But I've had frequent coughing and excessive mucus for over 20 years without proper diagnosis. I went through treatments for allergies, post nasal dripping, etc. because doctors thought these might be the cause of my coughing and excessive mucus. But nothing worked. When I was diagnosed with MAC after coughing up large amount of blood, I went to a pulmonary specialist and was told that I had bronchiectasis. Now the years of persistent coughing and mucus all made sense. The pulmonary doctor told me the thickening and roughing of my airways was not a new thing and I believe him. And he also said the condition of my airways created the hot bed for MAC to fester. And that made a lot of sense to me. I'm otherwise very healthy and don't have any other lung issues or immune system weakening. So I don't think MAC caused my bronchiectasis. Rather it is the other way around.

REPLY
Jen_b | @jenblalock | Dec 22, 2017
In reply to @windwalker "@jenblalock Hello Jen. @heathert Heather is right, ibuprophen helps to alleviate inflammation. Inflammation of the lungs..." + (show)
@windwalker

@jenblalock Hello Jen. @heathert Heather is right, ibuprophen helps to alleviate inflammation. Inflammation of the lungs is a common occurence for us. Some factors besides just having a disease are air quality issues. Some things that can cause inflammation are things in the air like scented candles, scented laundry detergent, deoderants, etc. There are 'silent' pollutants too; especially at this time of year. Be wary of shopping malls. They are overloaded with fresh merchandise that off-gass all kinds of chemicals that were applied overseas, along with many perfume samples being sprayed. I don't know how many of you have experienced burning eyes and asthma like symptoms while X-mas shopping. My point being, be cautious to airborne triggers, especially around this holiday.

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@tdrell On that note. I just had a consult with my GI doctor after a 24 hours PH test and a motility test she said I had VERY mild GERD and she doubted that I would be aspirating. While my doctor at NJH said she is 100% sure it's caused by GERD. No one can be 100% sure so that puts me off.

REPLY
Jen_b | @jenblalock | Dec 22, 2017
In reply to @windwalker "@jenblalock Hello Jen. @heathert Heather is right, ibuprophen helps to alleviate inflammation. Inflammation of the lungs..." + (show)
@windwalker

@jenblalock Hello Jen. @heathert Heather is right, ibuprophen helps to alleviate inflammation. Inflammation of the lungs is a common occurence for us. Some factors besides just having a disease are air quality issues. Some things that can cause inflammation are things in the air like scented candles, scented laundry detergent, deoderants, etc. There are 'silent' pollutants too; especially at this time of year. Be wary of shopping malls. They are overloaded with fresh merchandise that off-gass all kinds of chemicals that were applied overseas, along with many perfume samples being sprayed. I don't know how many of you have experienced burning eyes and asthma like symptoms while X-mas shopping. My point being, be cautious to airborne triggers, especially around this holiday.

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@heathert That is wonderful news!

REPLY
Jen_b | @jenblalock | Dec 22, 2017

@heathert Good I think. No signs of infection at this time. I did just send a sputum sample to NJH since mine keep getting rejected at our local hospital. Hopefully they'll be able to culture it and then I can rest easy. Thanks for asking. Happy Holidays to you!

REPLY
Jen_b | @jenblalock | Dec 22, 2017
In reply to @ling123 "@jkiemen I'm not a doctor. But I have read a lot on line after I was..." + (show)
@ling123

@jkiemen I'm not a doctor. But I have read a lot on line after I was diagnosed with bronchiectasis and MAC. Since the bacteria are found in soil and water, I assume the ones we get from the soil would most likely by inhaled and the ones from the water would likely be either inhaled through stream/vapor, such as when we take a shower, or aspirated from the stomach for people with GERD. These bacteria are prevalent. Most people have them in their systems. Only the unlucky few get infections from them. And we are some of the latter. So far, there is no consensus as to why some of us get the infections and others are not bothered by these bacteria. But one factor seems to come up a lot: those who already have pre-existing lung diseases and those who have weakened immune systems tend to be infected a lot more easily than people who are otherwise health. I believe I got the MAC infection because I have bronchiectasis.

Jump to this post

@ling123 That's good to know for you - in your case. Every case is different including my story. My lungs were clear in an Xray in 2014. By 2016 when I was diagnosed with MAC, I had cavitary lesions that showed on the Xray. I also had mild bronchiectasis. In my case I'm pretty sure the MAC caused the lesions but I'll never know for sure. That's impossible.

REPLY
ling123 | @ling123 | Dec 22, 2017
In reply to @ling123 "@jkiemen I'm not a doctor. But I have read a lot on line after I was..." + (show)
@ling123

@jkiemen I'm not a doctor. But I have read a lot on line after I was diagnosed with bronchiectasis and MAC. Since the bacteria are found in soil and water, I assume the ones we get from the soil would most likely by inhaled and the ones from the water would likely be either inhaled through stream/vapor, such as when we take a shower, or aspirated from the stomach for people with GERD. These bacteria are prevalent. Most people have them in their systems. Only the unlucky few get infections from them. And we are some of the latter. So far, there is no consensus as to why some of us get the infections and others are not bothered by these bacteria. But one factor seems to come up a lot: those who already have pre-existing lung diseases and those who have weakened immune systems tend to be infected a lot more easily than people who are otherwise health. I believe I got the MAC infection because I have bronchiectasis.

Jump to this post

@jenblalock You are right. These lung problems are so frustrating because everybody has a different condition that has led to infections and no case is clear cut. Besides, the available treatment is also a double-edged sword. While the antibiotics may kill the bugs, they may also do damage to other parts of your body. It is a very tricky thing to manage the balance.

REPLY
Jen_b | @jenblalock | Dec 22, 2017
In reply to @ling123 "@jkiemen I'm not a doctor. But I have read a lot on line after I was..." + (show)
@ling123

@jkiemen I'm not a doctor. But I have read a lot on line after I was diagnosed with bronchiectasis and MAC. Since the bacteria are found in soil and water, I assume the ones we get from the soil would most likely by inhaled and the ones from the water would likely be either inhaled through stream/vapor, such as when we take a shower, or aspirated from the stomach for people with GERD. These bacteria are prevalent. Most people have them in their systems. Only the unlucky few get infections from them. And we are some of the latter. So far, there is no consensus as to why some of us get the infections and others are not bothered by these bacteria. But one factor seems to come up a lot: those who already have pre-existing lung diseases and those who have weakened immune systems tend to be infected a lot more easily than people who are otherwise health. I believe I got the MAC infection because I have bronchiectasis.

Jump to this post

@ling123 Yes. Very frustrating. I am glad I am now off meds but always worry what's lurking down there in my lungs.

REPLY
ling123 | @ling123 | Dec 22, 2017
In reply to @ling123 "@jkiemen I'm not a doctor. But I have read a lot on line after I was..." + (show)
@ling123

@jkiemen I'm not a doctor. But I have read a lot on line after I was diagnosed with bronchiectasis and MAC. Since the bacteria are found in soil and water, I assume the ones we get from the soil would most likely by inhaled and the ones from the water would likely be either inhaled through stream/vapor, such as when we take a shower, or aspirated from the stomach for people with GERD. These bacteria are prevalent. Most people have them in their systems. Only the unlucky few get infections from them. And we are some of the latter. So far, there is no consensus as to why some of us get the infections and others are not bothered by these bacteria. But one factor seems to come up a lot: those who already have pre-existing lung diseases and those who have weakened immune systems tend to be infected a lot more easily than people who are otherwise health. I believe I got the MAC infection because I have bronchiectasis.

Jump to this post

@jenblalock My pulmonary doctor didn't think my infection was serious enough to warrant the big three when I first had MAC. He wanted to wait to see if the infection would clear up without them. But he would prescribe them for me if I chose to go on meds. I say I wanted to wait. A year and half later, my lungs had not gotten worse the last time I had the followup with him. In fact the condition was improved somewhat. So I know I had made the right decision. But we have decided that we'll still take the wait and see road and not completely drop the option of getting on the meds. I'm glad you are no longer having to take the meds. If you have regular followup and the conditions of your lungs are not worsening, then you should stop worrying and get on with the more pleasant side of your life. I know it's easier said than done. But we can't let this take away our ability to enjoy what life has to offer. Talk about enjoying life, here is my best wishes for a great holiday for you and your family.

REPLY
Jen_b | @jenblalock | Dec 22, 2017
In reply to @ling123 "@jkiemen I'm not a doctor. But I have read a lot on line after I was..." + (show)
@ling123

@jkiemen I'm not a doctor. But I have read a lot on line after I was diagnosed with bronchiectasis and MAC. Since the bacteria are found in soil and water, I assume the ones we get from the soil would most likely by inhaled and the ones from the water would likely be either inhaled through stream/vapor, such as when we take a shower, or aspirated from the stomach for people with GERD. These bacteria are prevalent. Most people have them in their systems. Only the unlucky few get infections from them. And we are some of the latter. So far, there is no consensus as to why some of us get the infections and others are not bothered by these bacteria. But one factor seems to come up a lot: those who already have pre-existing lung diseases and those who have weakened immune systems tend to be infected a lot more easily than people who are otherwise health. I believe I got the MAC infection because I have bronchiectasis.

Jump to this post

@ling123 You are correct! I think I will do just that. Thank you and have a wonderful holiday!

REPLY
tdrell | @tdrell | Dec 22, 2017
In reply to @windwalker "@jenblalock Hello Jen. @heathert Heather is right, ibuprophen helps to alleviate inflammation. Inflammation of the lungs..." + (show)
@windwalker

@jenblalock Hello Jen. @heathert Heather is right, ibuprophen helps to alleviate inflammation. Inflammation of the lungs is a common occurence for us. Some factors besides just having a disease are air quality issues. Some things that can cause inflammation are things in the air like scented candles, scented laundry detergent, deoderants, etc. There are 'silent' pollutants too; especially at this time of year. Be wary of shopping malls. They are overloaded with fresh merchandise that off-gass all kinds of chemicals that were applied overseas, along with many perfume samples being sprayed. I don't know how many of you have experienced burning eyes and asthma like symptoms while X-mas shopping. My point being, be cautious to airborne triggers, especially around this holiday.

Jump to this post

Jenblalock....I have had gastritis/hiatal hernia/delayed esphageal emptying/GERD for decades.........so why do I get MAC and this other grunge now??? Tdrell

REPLY
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