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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@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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@jenblalock Hi Jen. The prednisone should help a lot. I get put on it at least one time a year. I love the stuff. It makes me feel strong and gets my lungs back on track. I hope it will work as well for you.

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@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 Hi Terri. Today is day 4 of Prednisone and feeling SO much better! Normal I would say. Also, I'm glad to know the feeling bad was legit and that it wasn't just allergies that I had to live with. Hope it holds after I finish the prednisone. How are you doing?

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@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 Yes, it is doing it's job and I feel much better. Thanks! How are you doing?

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@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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Hi @jenblalock ,yay that is fantastic news!, I had steriods years ago when I was feeling dreadful and they were fantastic, worked quickly and efficiently.

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@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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I am hoping and praying you will stay negative.

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I got this results back from my doctor's office on AFB smear. The culture was marked as unacceptable in the beginning so not sure what he means:

Comments from the Doctor's Office
I have reviewed your results and although the smear showed some bugs, nothing has grown so far (out to 6 weeks)

FINAL REPORT No acid fast bacteria isolated at 6 weeks.
ACID FAST STAIN REPORT Acid fast bacilli seen .
2+ In number by fluorochrome stain.

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Yeah that seem to be contradictory

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@jkiemen

Yeah that seem to be contradictory

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@jkiemen I've asked for clarification. I think it means the actual culture did not grow anything but the initial smear showed something. However the culture was rejected because they said it was mostly sputum from the mouth (story of my NTM life so far). The doctor will tell me not to worry I bet. Doesn't mean I won't. 🙂

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I find that telling someone not to worry is nice to hear but the worrying continues anyway. I don't seem to be able to "not worry".

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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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