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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

tdrell | @tdrell | 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 and all.....finally have a new computer.....reading over a lot of the comments, Terri and all others....don't be fooled by the euphoria from the "bursts" that they are ordered in...be aware!
Meanwhile I have a one year follow up apt at NJH ..January 29th 2018.....will be curious to see what their opinion is.....l was told my MAC that was found locally with bronchoscopy was a result of my GERD (sound familiar) and if l work on that....all will be fine...no meds needed,
Hmmmm so a month after that...Feb l acquired a respiratory infection....cough and mucus galore that in spite of treatment with steroids and antibiotics continues 10 months later.
I requested 3 sputums be done for NTM /AFB from local pulmonologist....no signs of MAC but one grew "aerobic actinomycetes" which had no AFB. So onto the local ID doctor who asked a zillion questions and did testing for all kinds of weird things since l acquired the respiratory infection on a two week visit to Arizona. He also sent the above bacteria for more testing,,,,,,and said to return in 3 months which l did last week,
the culture was sent to Un of texas in tyler....their Mycobacterium/Nocardia Research Lab where they further tested the specimen and called it
Tsukamurella Species. and listed the meds it was resistant sensitive to.
I told the ID doctor l would be back to NJH for their opinion....he wants to treat with big 3 antibiotics
CAT scan of chest done at NJH in November showed all stable except l now have "thickened bronchial walls" which apparently can be from inflammation (not bronchiectasis) possibly chronic bronchitis.
I began CPAP in April ......one question that has arisen....could the latest bug be from the equipment....the water reservoir....l have a $300 ozone cleaning machine ....one doctor commented that it does not work on all bacteria.....
another question for NJH....maybe they will culture the machine and tubing ,etc
so folks as we all know....more questions ....maybe answers???? Have a great holiday season....stay away from illness and don't over do
tdrell

REPLY
Jen_b | @jenblalock | Dec 21, 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 Oh goodness! What a year you've had! I sure hope that NJH can figure something out (besides GERD diagnosis). Best of luck at your appointment. Who is your doctor?

REPLY
pfists | @pfists | Dec 21, 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

@tdrell
Reading over your post today the word narcodia popped out at me.
Several years ago I was diagnosed with narcodia. I live in Minnesota and haven't travelled out of Minnesota. I was diagnosed with it before ever being diagnosed with mycobacterrium.
It's pretty rare to my understanding was about 50 people in the USA a year get it.
I was treated for 8 months with sulfa because at that time I had no symptoms.
Then about a year later I was diagnosed again with it and had some major symptoms, my guess was I never really got rid of it the first time. They had done the susceptibilty tests and I was put on a Iv of rocephin for 6 weeks while I inhaled amakacin and took clarithamiacin by mouth. After 6 weeks I quit the Iv and continued the others. I felt better after a month of those. I had no side effects from the clarithamiacin for a year.
They do CT scans of your brain because the nacodia can spread there.
Also I saw where you were taking steroids. Just a note on that my pulminologist wants me to take it only at the lowest amount possible. He has me on one puff now of inhaled steroid a day now. I have taken tablets if I get in big trouble. But he pointed out that they weaken your immune system quite a bit so that these bugs can get ahold in your lungs. Be sure to run this by your Dr. first.
Take care.
Shari

REPLY
tdrell | @tdrell | Dec 21, 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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Jenblalick....thanks for your good wishes....Dr Gwen Huitt is my main Dr at NJH. Tdrell

REPLY
Jen_b | @jenblalock | Dec 21, 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

She is my doctor also. You're in good hands. Best and let me know how your check up goes.

REPLY
tdrell | @tdrell | Dec 21, 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

Pfists....thanks for sharing....this whole thing is aggravating....I will be curious to see what NJH comes up with as an answer.....as I after 3 years keep coughing and having mucus tdrell

REPLY
tdrell | @tdrell | Dec 21, 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

Pfists....I have so many questions for NJH....I won’t be satisfied with the GERD answer... tdrell

REPLY
tdrell | @tdrell | Dec 21, 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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Ling123....I think I have heard speakers say it is hard to know ...a type of chicken or egg scenario...with bronchiectasis and MAC. Tdrell

REPLY
heathert | @heathert | Dec 21, 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

Hi @jenblalock I am doing well at the moment. Had my 3 clear sputums but decided to carry on with the meds as long as I can.

REPLY
heathert | @heathert | Dec 21, 2017

@jenblalock How are you getting on now, hope all is great?

REPLY
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