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@afcardieri

Hi! I'm new here, diagnosed last January, and my name is Filis. Thank you for this info. I'm also concerned about MAC in bottled water, is it safe to drink and to make ice? What about ice and drinks at restaurant fountains? My doc told me a mixture of vinegar and water kills MAC on surfaces, faucets, etc. anyone else told this? How do you have the water tested for MAC? Thank you-all the best, Filis

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Replies to "Hi! I'm new here, diagnosed last January, and my name is Filis. Thank you for this..."

Yes indeed, I've seen vinegar mentioned in a few posts as a means for killing the bacteria...If I recall, a 30 minute straight vinegar soak for shower heads recommended...don't remember the frequency. You can check posts or Google it.

@afcardieri, Fillis .. Hugs! Katherine

From my File Cabinet:

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo .. Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. p.s. from Katherine .. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

Yes, that is all so true. We have gone back and forth on this issue in my house forever it seems. Why did half of my family get giardiasis when we lived on the Canadian border of New Hampshire and half did not? It was a parasite that had gotten into the water system there. We all drank that water. So does that mean that half my family will get MAC because we are, perhaps, genetically predisposed - who knows? I worry about that now because I am so sick with it and wouldn't wish it on anyone, especially my kids. The point is we need to concentrate on living in the present the best we can - and above all try very hard not to let MAC define us!

Thx so much, Katherine and Everyone for your wealth of info and encouragement. Yes, MAC is everywhere, in the air, water, soil, surfaces, etc. We've got to live without excess worrying about it. I am the only person in the family diagnosed with MAC last January, up until then I never heard of it. After the initial shock and on treatment, I am now feeling alone. Thank goodness for All of you here, I do not feel so depressed and isolated anymore. Hugs and Blessings-Filis

@katemn Katherine, I feel the same. Theoretically I understand people with MAC need to be careful about the water, the soil and a bunch of other things that we encounter on daily basis. But we can't lock ourselves up in a cage and surround ourselves with everything that is MAC-proof. That is not living. Like you said, "... some prevention is good, but we have to live".

My sentiments exactly.
 

The frequency is every six months.
 

Hi @boomerexpert and all I have read that you need acetic acid 10%(vinegar is very diluted acetic acid, I think around 5-7%), I bought some 80% acetic acid from a biological chemical place which I mix with water to 10%I dont think your normal vinegar is strong enough. Hope this isnt too complicated. I like it because its more natural and is known to kill these bugs.

@katemn - Katherine and @maryjo2sell .. Mary Jo,
I think this is the best advice of all! Don't get "carried away with prevention and protection from mycobacterium." There is so much contradictory information out there, and even among physicians. Live your life, and don't make NTM your priority. My getting NTM has nothing to do with water in my home or whether I shower or bathe. Now if we could just get a National Registry, the NTM Info & Research Org has the specialist to analyze the data and pull it all toghether. Then we'd get more accurate information. Just my 2 cents' worth.

@heathert, Heather could you share your resource/link for this product? It would be a good source for my File Cabinet! Hugs! Katherine