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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Jen_b | @jenblalock | Dec 20, 2017
In reply to @pfists "@windwalker Good info on the air pollutants. I can not be exposed to candles, they have..." + (show)
@pfists

@windwalker
Good info on the air pollutants. I can not be exposed to candles, they have toxic ingredients. The parrifin is petroleum based very toxic, then of coarse the perfumes are problematic.
I did find some natural candles the other day that don't both me. They are made from beeswax leadfree wick and natural lavender scent not artificial or you can get scent free. I cannot handle any perfumes scents in anything detegent soap, candles, room deordoizers ect. But I have many natural herbal ones that don't bother me in at all lavender, orange, lemon.
Shari

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@pfists That is good news indeed! Here's hoping you continue to test negative!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 20, 2017
In reply to @jkiemen "I have trouble getting sputum also. I often wonder is the throat and nose would also..." + (show)
@jkiemen

I have trouble getting sputum also. I often wonder is the throat and nose would also be colonized with MAI. Why would it just stay in the lungs.> Is the it in the throat and we keep inhaling it? Has anyone every asked their ID or Pulmonary person that question?

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@jkiemen I think that like @123ling said, these mycobacteriums are everywhere in the environment, and they probably are found in the throat and nose. I don't know if they can 'colonize' there or not. I would think they could in the sinuses as mold can. The lungs seem to be a favorite place due to the amount of plegm that collects there. They thrive in a moist and warm environment. In rare instances, MAC can disseminate into the rest of the body. In India, they commonly practice Ayervedic regimens. One example is clearing the nose and sinuses with a netti pot every day. I did that recently when I felt a cold coming on and it never got me.

REPLY
Jen_b | @jenblalock | Dec 20, 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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@windwalker That is great news, Terri! So glad you are getting your life back! Have a wonderful holiday. xxoo

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 20, 2017
In reply to @jkiemen "Yeah that seem to be contradictory" + (show)
@jkiemen

Yeah that seem to be contradictory

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@jenblalock, I believe the saline used at the doctor's office is stronger than 7%.

REPLY
Jen_b | @jenblalock | Dec 20, 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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I buy the saline nose rinse at the pharmacy and use that. I would worry that the neti pot might harbor bacteria. I'm not clear why neti pots are so popular when it's easy and fairly inexpensive to purchase the sterile saline and it seems more sanitary.

REPLY
Jen_b | @jenblalock | Dec 20, 2017
In reply to @jkiemen "Yeah that seem to be contradictory" + (show)
@jkiemen

Yeah that seem to be contradictory

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Thanks. I will ask them about that at my next appointment which isn't until April. Hopefully I'll stay healthy and it won't be an issue before that. I think I will send a sample to National Jewish also. They might have a more sophisticated lab.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 20, 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 to worry about sanitation. The netti pots have to be sterilized before each use, and water boiled with a little salt added. I guess it is cheaper and more convenient for some folks. I use the squeeze bulb like they use for newborns. I rinse it out with vinegar then boiling water when it is cooled down just a tad. Then use boiled salt water in the nose rinse. I do not do this very often; only when I have a problem with post nasal drip.

REPLY
ling123 | @ling123 | Dec 20, 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

@windwalker So happy to hear that you are well and enjoying time with family and friends. Hope you keep your health up and have the best of holidays this year and every year after that.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 20, 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

@123ling, Thank you Ling. Wishing you continued good health as well! Hugs!

REPLY
pfists | @pfists | Dec 20, 2017
In reply to @pfists "@windwalker Good info on the air pollutants. I can not be exposed to candles, they have..." + (show)
@pfists

@windwalker
Good info on the air pollutants. I can not be exposed to candles, they have toxic ingredients. The parrifin is petroleum based very toxic, then of coarse the perfumes are problematic.
I did find some natural candles the other day that don't both me. They are made from beeswax leadfree wick and natural lavender scent not artificial or you can get scent free. I cannot handle any perfumes scents in anything detegent soap, candles, room deordoizers ect. But I have many natural herbal ones that don't bother me in at all lavender, orange, lemon.
Shari

Jump to this post

@windwalker888
Thank you Terri
It will definently be a Merry Christmas!
My hope and prayer is that everyone on this site finds their path to healing soon.
That non evasive treatments become available that work effectively.
That they figure out how to remove it from our water supply.

Merry Christmas to you Terri and all on this site.
Shari

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