Hi Lyle,
You’re not paranoid, you’re just trying to take precautions. I do as well. According to Dr. Joseph Falkinham, who runs in NTM lab at Virginia tech, distilled water is not sterile. Although the water itself is sterile, the equipment to remove the metals is not.
When showering, I use a showerhead with large holes so very little mist is created. And I take short showers. Also, I swap out my showerhead every six weeks or so with an under $20 one from Amazon. I had thought to perhaps buy six of them and rotate them, but Dr. Falkinham said that in a study they did in his lab, after seven weeks although NTM was desiccated on the culture plate, about half of the bacteria were still viable. So, instead of rotating showerheads, I just replace them. And then donate them to Habitat for Humanity.
It’s so interesting to read how we all are trying to protect ourselves in different ways. Best, Linda Esposito
Hi Helen -
I guess the answer to a lot of questions with MAC is "It depends."
My home is highly unlikely to contain NTM in the water according to Dr Falkingham because we are plagued by pink slime mold. According to his research at the University of Virginia, the two cannot coexist in your pipes. As a result, I am probably less cautious than many people - we use .2 micron filtered drinking water for safety, keep our hot water heater at 138F to prevent growth of NTM, and use a rainfall (big drop) showerhead. Otherwise, my water precautions are minimal. I do use tap water for toothbrushing at home. But when we travel, we carry bottled spring water for drinking, toothbrushing, taking meds, etc.
This has worked for me for 4 years - 1 1/2 on the Big 3, 2 1/2 with airway clearance and nebulizing.
I'll answer your other question about saline in the other discussion.
Do you have any other questions about living with MAC?
Sue
Hi Helen -
I guess the answer to a lot of questions with MAC is "It depends."
My home is highly unlikely to contain NTM in the water according to Dr Falkingham because we are plagued by pink slime mold. According to his research at the University of Virginia, the two cannot coexist in your pipes. As a result, I am probably less cautious than many people - we use .2 micron filtered drinking water for safety, keep our hot water heater at 138F to prevent growth of NTM, and use a rainfall (big drop) showerhead. Otherwise, my water precautions are minimal. I do use tap water for toothbrushing at home. But when we travel, we carry bottled spring water for drinking, toothbrushing, taking meds, etc.
This has worked for me for 4 years - 1 1/2 on the Big 3, 2 1/2 with airway clearance and nebulizing.
I'll answer your other question about saline in the other discussion.
Do you have any other questions about living with MAC?
Sue
Thanks you for your response. I guess I am scared as MAC is new to me. I started antibiotic therapy about 2weeks ago and this week I am to start the 4th with a nebulizer. Its a bit overwhelming....I guess my question its in regards to pain. I have been experiencing pain in my lower back and upper legs. Its not daily and at times comes in sudden. I will take motrin. Is this usual. I have other side effects but so far nothing I can't handle. If you or anyone has side effects from the mac meds what can I expect as far as how long they last?
Hi Helen -
I guess the answer to a lot of questions with MAC is "It depends."
My home is highly unlikely to contain NTM in the water according to Dr Falkingham because we are plagued by pink slime mold. According to his research at the University of Virginia, the two cannot coexist in your pipes. As a result, I am probably less cautious than many people - we use .2 micron filtered drinking water for safety, keep our hot water heater at 138F to prevent growth of NTM, and use a rainfall (big drop) showerhead. Otherwise, my water precautions are minimal. I do use tap water for toothbrushing at home. But when we travel, we carry bottled spring water for drinking, toothbrushing, taking meds, etc.
This has worked for me for 4 years - 1 1/2 on the Big 3, 2 1/2 with airway clearance and nebulizing.
I'll answer your other question about saline in the other discussion.
Do you have any other questions about living with MAC?
Sue
I also use tap water because I am really only rinsing and spitting and figure it's much less likely to make me sick if I'm not drinking it. In general, Lifestraw is a great option for filtering your water on the go and they also sell a dispenser for the fridge. This makes it less time consuming to treat tap water, and you can rest assured that you're drinking sterile water and take the worry out of it.
The membrane filter lasts a year and does the work of filtering out 99.999% of all bacteria (including NTM). The carbon filter is mainly responsible for improving the taste of your water and they recommend changing the filters every couple of months.
I have spent a bit of time searching through the information on line about the Life Straw bottle.
Now, my lab tested the Life Straw bottles and found that they filtered out NTM. We tested them by adding a billion cells of NTM cells and found that none passed through into the water for drinking.
Yes, some versions of the Life Straw bottle have granular activated charcoal (carbon) filters as well as a filter with a pore size of 0.2 micrometers to filter out NTM and bacteria. I could not find details in the information from LifeStraw as to whether the GAC filter was before or after the 0.2 micrometer filter.
Whether the position of the GAC filter is before or after the 0.2 micrometer pore size filter is not important to whether it prevents passage of NTM. Yes, a GAC filter will support NTM growth (something reported by EPA in 1999). If the GAC filter is before the 0.2 micrometer filter and there is sufficient time for the NTM to grow, the 0.2 micrometer filter will remove any NTM. In contrast, if the GAC filter follows (downstream) the 0.2 micrometer filter, there will no NTM to grow.
I always have a bottle of spring water by my sink but when I brush my teeth I just swish tap water and spit. I've been told we have excellent water, but who knows. For everything else, I use the spring water.
Hi Helen -
I guess the answer to a lot of questions with MAC is "It depends."
My home is highly unlikely to contain NTM in the water according to Dr Falkingham because we are plagued by pink slime mold. According to his research at the University of Virginia, the two cannot coexist in your pipes. As a result, I am probably less cautious than many people - we use .2 micron filtered drinking water for safety, keep our hot water heater at 138F to prevent growth of NTM, and use a rainfall (big drop) showerhead. Otherwise, my water precautions are minimal. I do use tap water for toothbrushing at home. But when we travel, we carry bottled spring water for drinking, toothbrushing, taking meds, etc.
This has worked for me for 4 years - 1 1/2 on the Big 3, 2 1/2 with airway clearance and nebulizing.
I'll answer your other question about saline in the other discussion.
Do you have any other questions about living with MAC?
Sue
Thank you for offering to help. I have just been diagnosed NTM (Abcessus) and want to know how to obtain NTM free water. Boiling? Reverse Osmosis that is sold at Whole Foods? What brand/type of home filter? Thank you!
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Good information, thank you.i do my best to stay out of the shower. I soak my showerhead in vinegar once a month hoping that will help!
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Hug
3 ReactionsI also use a lifestraw. 🙂
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Hug
1 ReactionHello, new to this page. I just installed AquaCare shower head and little to no mist. I live it. Still having a hard time with shorter showers....
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Hug
2 ReactionsHi Helen -
I guess the answer to a lot of questions with MAC is "It depends."
My home is highly unlikely to contain NTM in the water according to Dr Falkingham because we are plagued by pink slime mold. According to his research at the University of Virginia, the two cannot coexist in your pipes. As a result, I am probably less cautious than many people - we use .2 micron filtered drinking water for safety, keep our hot water heater at 138F to prevent growth of NTM, and use a rainfall (big drop) showerhead. Otherwise, my water precautions are minimal. I do use tap water for toothbrushing at home. But when we travel, we carry bottled spring water for drinking, toothbrushing, taking meds, etc.
This has worked for me for 4 years - 1 1/2 on the Big 3, 2 1/2 with airway clearance and nebulizing.
I'll answer your other question about saline in the other discussion.
Do you have any other questions about living with MAC?
Sue
-
Like -
Helpful -
Hug
2 ReactionsThanks you for your response. I guess I am scared as MAC is new to me. I started antibiotic therapy about 2weeks ago and this week I am to start the 4th with a nebulizer. Its a bit overwhelming....I guess my question its in regards to pain. I have been experiencing pain in my lower back and upper legs. Its not daily and at times comes in sudden. I will take motrin. Is this usual. I have other side effects but so far nothing I can't handle. If you or anyone has side effects from the mac meds what can I expect as far as how long they last?
Hi Sue, i know this is an old post, but I’d like to ask you What kind of 0.2 filter for drinking water do you use ? Thanks
I don't know. That is something my husband takes care of for me, and he is not sure anymore what it is.
I also use tap water because I am really only rinsing and spitting and figure it's much less likely to make me sick if I'm not drinking it. In general, Lifestraw is a great option for filtering your water on the go and they also sell a dispenser for the fridge. This makes it less time consuming to treat tap water, and you can rest assured that you're drinking sterile water and take the worry out of it.
The membrane filter lasts a year and does the work of filtering out 99.999% of all bacteria (including NTM). The carbon filter is mainly responsible for improving the taste of your water and they recommend changing the filters every couple of months.
My questions re: Lifestraw with Dr. Falkinham are included below and link to the topic on NTMir here: https://connect.ntminfo.org/discussion/lifestraw-or-boiling#bm2ba29fe2-6c66-45fe-8856-0190e5325fe5
Lifestraw GO Series: https://lifestraw.com/products/lifestraw-go-series-stainless-steel-700-ml
Lifestraw Dispenser: https://lifestraw.com/products/lifestraw-home-dispenser
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From Dr. Falkinham:
I have spent a bit of time searching through the information on line about the Life Straw bottle.
Now, my lab tested the Life Straw bottles and found that they filtered out NTM. We tested them by adding a billion cells of NTM cells and found that none passed through into the water for drinking.
Yes, some versions of the Life Straw bottle have granular activated charcoal (carbon) filters as well as a filter with a pore size of 0.2 micrometers to filter out NTM and bacteria. I could not find details in the information from LifeStraw as to whether the GAC filter was before or after the 0.2 micrometer filter.
Whether the position of the GAC filter is before or after the 0.2 micrometer pore size filter is not important to whether it prevents passage of NTM. Yes, a GAC filter will support NTM growth (something reported by EPA in 1999). If the GAC filter is before the 0.2 micrometer filter and there is sufficient time for the NTM to grow, the 0.2 micrometer filter will remove any NTM. In contrast, if the GAC filter follows (downstream) the 0.2 micrometer filter, there will no NTM to grow.
Joe
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Hug
4 ReactionsDid you test your water? How did you do it? Who told you the water is "excellent?" Thanks!
Thank you for offering to help. I have just been diagnosed NTM (Abcessus) and want to know how to obtain NTM free water. Boiling? Reverse Osmosis that is sold at Whole Foods? What brand/type of home filter? Thank you!