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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won't take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.
He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn't need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn't seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I'm afraid to ask for another pulmonologist at Kaiser, because I'm afraid they will back each other up, or at least not contradict each other.
Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn't work). I simply cannot do so, since I have no backup for my job. I'm willing to travel to one place, maybe Mayo Clinic in Rochester, MN.
If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?
Replies to "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..."
What about swimming in well water or salt water pools? More and more pools have well water or salt water -- hopefully much safer for us. Anyone know anything about these possibilities?
Having a hard time with replying.....not putting my response through
Ok finally....have found nothing new, then what we already no about swimming pools...indoor harbouring MAC, outdoor as well, but maybe not as bad, because u r outside??? Salt water and fresh water, have t read anything....it seems to me that salt water, when heated also carries MAC, but maybe not as bad????? So I would not go under water, and maybe wear a mask to tread water lightly, and cool off...just the conversations we have already had??? I'll keep looking✌️
@megan123 Jennifer, I found info on the NIH.gov website about mac being in pools, hot tubs, lakes, rivers, and the ocean. The warmer ocean water of the southeast coast contains 20% avium bacterium, lakes about 30%, pools usually 80%, hot tubs are loaded with it. The mac has become resistant to chlorine. It takes a whole lot more and frequent doses, but it colonizes in the filtration system so it readily re-infects the pool water. Plus rain water dilutes the chlorine as well when it rains over a pool. I was on my phone when I found the site so I could not copy and paste. I will try to find the site again on my laptop where I can do so. The bottom line is, we have compromised immune systems and shouldn't risk picking up what is in the pool. I will do a quick 'fanny dunk' to cool off at the beach or outdoor pool. I absolutely WILL NOT get into a hot tub ever again.
@128128terry11t, We have a salt water pool in my community. It is small and only 4 feet deep. LOTS of kids swim in it, babies and toddlers in diapers swim in it. I sat by it last week, the water was murky and I kept thinking about diapers in there. I just packed up and went home. I did not have a good feeling about it. Public pools are just nasty. I think that if it is a private well maintained pool, you may be able to swim safely, but I'd keep my head out of the water and avoid breathing in droplets. I have not come across anything about well water pools.
@windwalker Thank you.
@megan123 Info was found on NIH.gov website.
Thanks Terry.....swimming days are done....bought a bike, and am now starting bike riding...lol✌️
@megan123 Congrats on the bicycle! I went for an afternoon ride today. It was very invigorating. My lungs said "Ahhhh, tjank you for tje work-out!" I am struggling with a pinched merve in my back and I tried riding it out today. I think it helped. I hope that you enjoy your bike as much as I do mine.
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@meagan123 Hi there. Did you get your answers about swimming in pools, etc.?