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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
Kay, you are SO totally correct!! In my absolute "paranoia" .. now much to my chagrin I began to try to anti mycobacterium every water source in my home! In retrospect .. SO SILLY! Luckily Dr. Aksamit brought me to my senses! Truth is NO ONE actually knows exactly how/where we get mycobacterium in our lungs. It is all over our bodies .. it is in water .. it is in the soil .. it just is NOT supposed to be in our lungs. But not enough research has been done to figure out how/why it gets in our lungs.
So my wild goose chase was silly .. fear drove me and I'm not afraid to admit it. Even if we have GERDS/reflux filtered water is not an issue/does not help. With GERDS the theory is that GERDS MAY be a breeding ground for the mycobacterium ie .. as the reflux sits there it BECOMES the breeding ground for mycobacterium. One theory only .. no one knows.
Thank you for pointing this out .. it is NOT even proven that we get iMAC/MAI from "breathing it in" showering .. just one more theory. LOTS of theories .. not one single PROVEN one. Wish there were! All we can do is take shorter showers .. no tub baths ..stay away from hot tubs .. perhaps wear a mask while gardening .. etc. The usual precautions. Hope this help? Katherine
Replies to "Kay, you are SO totally correct!! In my absolute "paranoia" .. now much to my chagrin..."
Katherine
Why do you say"no tub baths"? I understood tubs were ok. If we stay away from showers how are we suppose to get clean if not a bath??? Thx, maybe I read it incorrectly!
Kay S
Kay, SO glad you mentioned this .. I was in a hurry and misspoke. Was doing this too quickly and added too many "cleaning" sources! Tub baths are fine as far as I've read .. don't just keep adding hot water as you are sitting in it. Again, shorter showers .. I've read "For stall showers, an opening at the top of the door and a fan while showering may reduce the risk." That sounded like good sense.
Kay, thanks for bringing that to my attention .. sometimes I am tired etc! Katherine
From what I have read about MAC is that EVERYBODY has it in their lungs to some degree. It is the folks with immuno-compromised bodies that cannot keep it at bay. That mycobacterium is in the air as well as water and soil. There is no way to avoid it really.
Terri, agree .. EXCEPT to stay as healthy as possible .. mentally and physically! Katherine
I think you are correct about MAC being everywhere, but I don't think it is supposed to be in our lungs. And yes, it needs a susceptible host. Why some of us fall into that susceptible category is only speculative based on skeletal structure and age etc. (e.g. Lady Windemere syndrome). Irene
Irene, you are so right. It is NOT supposed to be in our lungs .. as Dr. Aksamit told me .. there is just not enough money for research to find out just HOW/WHY it DOES get into our lungs. My personal viewpoint is that it is going to be found it is a combination of genetic/environmental/immune deficient. No one thing. Dr. Aksamit said a couple could be together for 20 years doing exactly the same things .. one gets it .. the other does not. Complicated. Lady Windemere .. well men get it also .. just not in the same numbers. Best, Kaherine
I agree 100%! Irene
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...have already begun and man oh man am gittin th runaround! there is, however, NOTHING lak an EMPOWAHED WOMAN! nelisabeth and DID git printed out .... safely and attached to mah new book of evry step i take!