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@windwalker

@gaylewroc Hi Gayle. Your situation sounds frustrating. Kudos to you for staying in the fight, I mean it. Don't ever give up, keep trying different things. Are you also taking measures not to repeatedly expose yourself where you think you might be? i.e. hot tubs, swimming pools, or in your own shower? Gardening? May I ask what part of the country you live?

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Replies to "@gaylewroc Hi Gayle. Your situation sounds frustrating. Kudos to you for staying in the fight, I..."

@windwalker Hi Terri! Good question...AKA Hot tub lung!! I haven't been in a hot tub since the 70's!! I live in Alabama, and I moved here from Florida and I know Florida is a hot spot. I have a familial history of Bronchiectasis...my mother and her twin sister both had it...and I believe they had a MAC infection also by the way they wasted away. Both died in their early 80"s and had Doc's that didn't know what they had. We all could have gotten in in Florida from a shower..we lived in the same town. I do garden here in Alabama. I wear a mask now, and try to remember to soak my shower head in vinegar. I had a flare a year ago when I joined a Rec/Rehab facility and spent about 45 minutes in a therapy pool. It was like heaven and I didn't want to get out.(it was like a hot tub).after that I flared pretty bad. I learned I can't even go near the lap pool!!! I have some other problems that make it hard. I also have Lupus which includes Fibro etc. and some heart valve issues..Fatigue is huge problem, and sometimes I don't know if Lupus is flaring or my infection. The Doc's don't know either.

I've basically been in bed since Christmas. I had my immediate family, 4 kids, 5 grand kids and spouses and fell into bed the minute they left. I was taking prednisone to get through the holiday. My Doctor's do not know how to treat this disease and I am over it!! That's when I checked into Mayo clinic because were not that far. After joining this group I found a recommendation for a Doc in Atlanta at Emory. That's only 2.5 hours away and my Daughter lives in Atlanta...so win-win.. Thankfully they are getting me in next month and I am really hoping for a better outcome. I will go wherever I need to go to get a life!!