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Posts (15)

Tue, Mar 19 3:19pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@windwalker Hi Terri (and everyone), I just found the website https://bronchiectasisnewstoday.com/ It has lots of useful articles. There’s one that indicates exercise is helpful, and may explain why I and some other the others here seem to be ok without antibiotics: https://bronchiectasisnewstoday.com/bronchiectasis-treatment/exercise-training-for-bronchiectasis/
Another article from the same website suggests that it’s important for those without treatment or symptoms to be carefully monitored over time: https://bronchiectasisnewstoday.com/2017/10/10/untreated-patients-with-nodular-bronchiectatic-mac-lung-disease-fare-poorly-over-time-study-says/

Nov 26, 2018 · Using a humidifier with MAC in MAC & Bronchiectasis

@spencersok I live in Michigan in the summer and Tucson in the winter. When I was diagnosed with MAC, my Infectious Disease doc told me that it's very unusual to see MAC in Michigan, and thinks I got it in Arizona, which is terribly dry. @windwalker (Terri M), wrote in a comment to me in the "New Diagnosis of MAC/MAI & I'm scared" thread: "I caught my mac in Tucson, Az. pretty sure from our hot tub. Arizona is one of our country's 'Hot Spots' for mac. Some other states are: Florida, California, Wisconsin, Hawaii, and I think New Hampshire. Well water is supposed to be void of mac in most cases." @sueinmn wrote: "according to my doc, and the reading I have done, the bacterium is endemic in MANY places – in fact, just about everywhere. I too was diagnosed after several winters in South Texas and Arizona – and several bouts of what appeared to be desert fever or valley fever."

Nov 11, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Can anyone tell me which is better/easier to use and clean: Aerobika or Acapella? I need to start one soon. Thanks!

Nov 10, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@windwalker, Hi Terri. Thanks for the info! We've lived in Oro Valley, a Tucson suburb, in the winter since 2009 and spent all year here for two years before that. I thought I caught valley fever in my second summer here, but wasn't tested then. Last year after I coughed up blood in MI, they tested and didn't find any antibodies for valley fever.
We just got back to Tucson a week ago, and I noticed I'm coughing more. I had been lap swimming 2-3 times a week in a heated (86 degree) outdoor pool here since we first moved here and once in a while I used the community hot tub. I'm NOT swimming here any more!!! I've been trying to convince my husband to go to coastal Georgia or South Carolina for the winter, instead of here, because the drive is much shorter and we could go back and forth from MI with a cat. (We used to have two cats, who have both passed away. We drove 3 long days with the cats back and forth to MI and they hated it! Now we fly because I hated the drive.) Maybe knowing the MAC issue, I'll have more luck persuading him. 🙂

Nov 8, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@macjane Jane, Hello. I too live in Michigan, at least in the summer (Arizona in the winter)—on a small lake in Hartland Township about 30 miles north of Ann Arbor. I was recently diagnosed with a mild case of MAC at the University of Michigan Medical Center. My infectious disease doctor told me that it is very unusual for someone in Michigan to have MAC and suspects I got it in Arizona (or Colorado, where I lived for 27 years). I’d love to know where/how you think you got MAC. Where in Michigan do you live? Do you have city or well water? (I have well water in an area of prairie fens.) Have you recently lived anywhere other than Michigan?
Thanks and good luck, Lori

Oct 7, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@alleycatkate Kate, regarding GERD, I’ve tried 2 different types of wedges for sleeping and ended up rejecting both. The first was the standard 2-foot long wedge that made me bend at the waist instead of at the hips, which was very uncomfortable. The second was a full bed wedge. It was only 3 inches at the head to an eighth inch at the foot. However, even with the mild slant, both my husband and I ended up sliding down the bed in our sleep, with our feet scrunched up at the bottom of the bed in the morning.

Your reminding me not to sleep on my right side also resulted in an hilarious experiment this morning. I typically fall asleep most quickly when my husband cuddles me by spooning. I’ve been sleeping on the right side of the bed (if facing up to the ceiling) for the 40 years of our marriage, so when we spoon, I’m lying on my right side. This morning while we were cuddling (not spooning), I remembered your post and I suggested we try cuddling by switching place on the bed, so that when we ended up spooning, I'd by on my left side. We would have made a great comedy on “Candid Camera!” Our arms were all akimbo trying to do the mirror image of what we’d been doing for so long. I almost ended up on the floor laughing so hard. (I think I’ll first try staying on the right side of the bed, but not spooning to fall asleep. 🙂 )

Regarding the Red Tide and blue-green algae in Florida, I'm not at all hopeful. If current industrial farming practices continue and the problems of climate change continue to be ignored, I expect things will only get worse. 🙁

Oct 6, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@alleycatkate Kate, thanks for all the useful information, including about 7% saline and GERD! (This website is a godsend!)