So I was told by my CF nurse to not us ANY tap water on my neb pieces. This makes it really hard to use distilled water for the washing step cause you have to use SOOOOOOO much to get all that soap off the cups and pieces. What are you all doing? Have you stopped using Tap water and if so then what is your method. I use to rinse and wash with tap and then put in my Avent Steamer to sanitize and kill anything. But nurse says NO Tap what so ever... So now what. I will go through WAY too much distilled water daily if I have to use that to wash the nebs in. They are so soapy that it needs a good rinse like from the faucet not a gallon bottle of tap water that I pour on it. I will need so much.<br><br>So now I was thinking of just rinsing with distilled water after each use and THEN at the end of the week do a washing and sterilizing. That way I am just rinsing one time and not have to go through so much distilled.<br><br>What is everyone doing these days.<br><br>This all stemmed from that article that came out about the amoeba brain eating thing. Nurse said she has witnessed a death from that from a person with lake water and it was not a pretty site. So she says no Tap water in any neb or netti pot. No tap water for your lungs or sinuses at all....<br><br>Suggestions?<br>
Tap Water
- Thread starter Giggles
- Start date
So I was told by my CF nurse to not us ANY tap water on my neb pieces. This makes it really hard to use distilled water for the washing step cause you have to use SOOOOOOO much to get all that soap off the cups and pieces. What are you all doing? Have you stopped using Tap water and if so then what is your method. I use to rinse and wash with tap and then put in my Avent Steamer to sanitize and kill anything. But nurse says NO Tap what so ever... So now what. I will go through WAY too much distilled water daily if I have to use that to wash the nebs in. They are so soapy that it needs a good rinse like from the faucet not a gallon bottle of tap water that I pour on it. I will need so much.<br><br>So now I was thinking of just rinsing with distilled water after each use and THEN at the end of the week do a washing and sterilizing. That way I am just rinsing one time and not have to go through so much distilled.<br><br>What is everyone doing these days.<br><br>This all stemmed from that article that came out about the amoeba brain eating thing. Nurse said she has witnessed a death from that from a person with lake water and it was not a pretty site. So she says no Tap water in any neb or netti pot. No tap water for your lungs or sinuses at all....<br><br>Suggestions?<br>
It is not like distilled water is perfectly safe. Distilled water is not sterile. If you are that concerned then I'd just boil all your pieces after each use, even in tap water. Maybe you can boil a bunch of water and use that to rinse with, again, if you really are that concerned. There are risks with everything, and as long as you are practicing some kind of neb cleaning and sterilizing on a regular basis, I think you will be fine. 
I'd be much more concerned about the bacteria in the steam coming from your shower, or going to the doctor office, hospital, mall, etc. <br>
I'd be much more concerned about the bacteria in the steam coming from your shower, or going to the doctor office, hospital, mall, etc. <br>It is not like distilled water is perfectly safe. Distilled water is not sterile. If you are that concerned then I'd just boil all your pieces after each use, even in tap water. Maybe you can boil a bunch of water and use that to rinse with, again, if you really are that concerned. There are risks with everything, and as long as you are practicing some kind of neb cleaning and sterilizing on a regular basis, I think you will be fine. I'd be much more concerned about the bacteria in the steam coming from your shower, or going to the doctor office, hospital, mall, etc. <br>
I'd be much more concerned about the bacteria in the steam coming from your shower, or going to the doctor office, hospital, mall, etc. <br>I don't understand that at all. I do the same thing as you - put it in the sterilizer after I clean them with tap water. Shouldn't the sterilizer kill any bugs that may have been introduced by the tap water? Isn't that the whole point of the sterilization processes - to STERILIZE the nebs? So, is she saying that the sterilizer doesn't really work?
As far as the netti pot goes, I clean it the same way I clean my nebs (although I only sterilize it every few days, not after each use...hmmm....maybe I should change that). But I just started using distilled to rinse my sinuses. Distilled water is not sterile, but there are less likely to be any bugs in distilled water compared to tap water.
As far as the netti pot goes, I clean it the same way I clean my nebs (although I only sterilize it every few days, not after each use...hmmm....maybe I should change that). But I just started using distilled to rinse my sinuses. Distilled water is not sterile, but there are less likely to be any bugs in distilled water compared to tap water.
I don't understand that at all. I do the same thing as you - put it in the sterilizer after I clean them with tap water. Shouldn't the sterilizer kill any bugs that may have been introduced by the tap water? Isn't that the whole point of the sterilization processes - to STERILIZE the nebs? So, is she saying that the sterilizer doesn't really work?
As far as the netti pot goes, I clean it the same way I clean my nebs (although I only sterilize it every few days, not after each use...hmmm....maybe I should change that). But I just started using distilled to rinse my sinuses. Distilled water is not sterile, but there are less likely to be any bugs in distilled water compared to tap water.
As far as the netti pot goes, I clean it the same way I clean my nebs (although I only sterilize it every few days, not after each use...hmmm....maybe I should change that). But I just started using distilled to rinse my sinuses. Distilled water is not sterile, but there are less likely to be any bugs in distilled water compared to tap water.
She said NO TAP water at all. If I must use it then boil the tap water for 10 mins and keep in a sealed container or just use distilled she said. So I am not taking any chances and will use distilled for every step. But makes it interesting cause I know there are TONS of people that use tap. Interesting........<br>
She said NO TAP water at all. If I must use it then boil the tap water for 10 mins and keep in a sealed container or just use distilled she said. So I am not taking any chances and will use distilled for every step. But makes it interesting cause I know there are TONS of people that use tap. Interesting........<br>
1) I'm not going to weigh in on the tap water issue other than to say that US tap water is very safe for the most part, and yes if you sterilize afterwards it will kill Naegleria fowleri (the 'brain-eating ameoba') that is making the news. There are some viruses and hardy bacteria that will survive sterilization but ameoba's are not hardy.
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<br>2) Jennifer, to be polite your nurse is full of lake water. There have been on average 3 cases of Naegleria fowleri infection a year in the entire US over the last decade according to the CDC. The odds of her having witnessed a case of it are pretty low, and even then it looks like meningitis..headaches, seizures, coma, death.
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<br>2) Jennifer, to be polite your nurse is full of lake water. There have been on average 3 cases of Naegleria fowleri infection a year in the entire US over the last decade according to the CDC. The odds of her having witnessed a case of it are pretty low, and even then it looks like meningitis..headaches, seizures, coma, death.
1) I'm not going to weigh in on the tap water issue other than to say that US tap water is very safe for the most part, and yes if you sterilize afterwards it will kill Naegleria fowleri (the 'brain-eating ameoba') that is making the news. There are some viruses and hardy bacteria that will survive sterilization but ameoba's are not hardy.
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<br>2) Jennifer, to be polite your nurse is full of lake water. There have been on average 3 cases of Naegleria fowleri infection a year in the entire US over the last decade according to the CDC. The odds of her having witnessed a case of it are pretty low, and even then it looks like meningitis..headaches, seizures, coma, death.
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<br>2) Jennifer, to be polite your nurse is full of lake water. There have been on average 3 cases of Naegleria fowleri infection a year in the entire US over the last decade according to the CDC. The odds of her having witnessed a case of it are pretty low, and even then it looks like meningitis..headaches, seizures, coma, death.
You can request a report from your local municipal water source regarding what all is in your water. Our community mails out one to every individual each year as to what is in our drinking water. I was more concerned in the past when we went to my inlaws lake home prior to having their new well dug or when we travelled to Mexico with DS.
You can request a report from your local municipal water source regarding what all is in your water. Our community mails out one to every individual each year as to what is in our drinking water. I was more concerned in the past when we went to my inlaws lake home prior to having their new well dug or when we travelled to Mexico with DS.
SIcklyhatED
New member
I've always rinsed with tap water and only after I got my caystin did I even consider sanitizing anything. I don't really believe in it, since my nebs aren't getting ground into the dirt or dipped into the toilet (though what you do with your nebs is your business...) I've even rinsed them in Mexico and, though I'm only 1 case, have never gotten sick from that. The only things in my lungs are psuedomonus and nocardia. I feel like people are so overly paranoid about sanitation in the US...
SIcklyhatED
New member
I've always rinsed with tap water and only after I got my caystin did I even consider sanitizing anything. I don't really believe in it, since my nebs aren't getting ground into the dirt or dipped into the toilet (though what you do with your nebs is your business...) I've even rinsed them in Mexico and, though I'm only 1 case, have never gotten sick from that. The only things in my lungs are psuedomonus and nocardia. I feel like people are so overly paranoid about sanitation in the US...
I am 38 years old and have always used tap water with No Ill effect. I use it to wash all 3 of my nebs and I use it for my sinus rinses 3 times a day. I have been doing it that way since 13 years old and never had any illness due to tap water. I think people are just over reacting to stuff any more. It is your choice but with all the time we all ready spend doing treatments I refuse to take more time to use sterirlized water..
I have a hard time listening to News that is about ameoba they can not prove with medical documents that Tap water caused this alone.
This is my opinion and good luck on what you decide to do..
I have a hard time listening to News that is about ameoba they can not prove with medical documents that Tap water caused this alone.
This is my opinion and good luck on what you decide to do..
I am 38 years old and have always used tap water with No Ill effect. I use it to wash all 3 of my nebs and I use it for my sinus rinses 3 times a day. I have been doing it that way since 13 years old and never had any illness due to tap water. I think people are just over reacting to stuff any more. It is your choice but with all the time we all ready spend doing treatments I refuse to take more time to use sterirlized water..
I have a hard time listening to News that is about ameoba they can not prove with medical documents that Tap water caused this alone.
This is my opinion and good luck on what you decide to do..
I have a hard time listening to News that is about ameoba they can not prove with medical documents that Tap water caused this alone.
This is my opinion and good luck on what you decide to do..