B. cepacia traced to contaminated distilled water

J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Shine</b></i>

Hey Prussian,

I'm so glad that you posted this I had know idea that B.Cepacia lurked in Distiled water!I only knew that it was in rotten Onions.

Does that also mean B.Cepacia can lurk in bottled water you buy from grocery stores?

My husband and I regularly buy 10 lites of filtered water twice a week that is oxygenated and has a ph balance. Do you think B.Cepacia might lurk in this?



They should tell you these type of things at clinic so you kinda have an idea what to look out

for. Thanks so much for this info, really appreciate it <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?

Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......

I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!

Be cautious, but dont fret!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Shine</b></i>

Hey Prussian,

I'm so glad that you posted this I had know idea that B.Cepacia lurked in Distiled water!I only knew that it was in rotten Onions.

Does that also mean B.Cepacia can lurk in bottled water you buy from grocery stores?

My husband and I regularly buy 10 lites of filtered water twice a week that is oxygenated and has a ph balance. Do you think B.Cepacia might lurk in this?



They should tell you these type of things at clinic so you kinda have an idea what to look out

for. Thanks so much for this info, really appreciate it <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?

Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......

I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!

Be cautious, but dont fret!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Shine</b></i>

Hey Prussian,

I'm so glad that you posted this I had know idea that B.Cepacia lurked in Distiled water!I only knew that it was in rotten Onions.

Does that also mean B.Cepacia can lurk in bottled water you buy from grocery stores?

My husband and I regularly buy 10 lites of filtered water twice a week that is oxygenated and has a ph balance. Do you think B.Cepacia might lurk in this?



They should tell you these type of things at clinic so you kinda have an idea what to look out

for. Thanks so much for this info, really appreciate it <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?

Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......

I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!

Be cautious, but dont fret!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Shine</b></i>

Hey Prussian,

I'm so glad that you posted this I had know idea that B.Cepacia lurked in Distiled water!I only knew that it was in rotten Onions.

Does that also mean B.Cepacia can lurk in bottled water you buy from grocery stores?

My husband and I regularly buy 10 lites of filtered water twice a week that is oxygenated and has a ph balance. Do you think B.Cepacia might lurk in this?



They should tell you these type of things at clinic so you kinda have an idea what to look out

for. Thanks so much for this info, really appreciate it <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote>

Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?

Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......

I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!

Be cautious, but dont fret!
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Shine</b></i>
<br />
<br />Hey Prussian,
<br />
<br />I'm so glad that you posted this I had know idea that B.Cepacia lurked in Distiled water!I only knew that it was in rotten Onions.
<br />
<br />Does that also mean B.Cepacia can lurk in bottled water you buy from grocery stores?
<br />
<br />My husband and I regularly buy 10 lites of filtered water twice a week that is oxygenated and has a ph balance. Do you think B.Cepacia might lurk in this?
<br />
<br />
<br />
<br />They should tell you these type of things at clinic so you kinda have an idea what to look out
<br />
<br />for. Thanks so much for this info, really appreciate it <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote>
<br />
<br />Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?
<br />
<br />Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......
<br />
<br />I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!
<br />
<br />Be cautious, but dont fret!
<br />
<br />
<br />
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I boil any and all water that comes into contact with my nebs or that I use for my sinus rinses. I'd just boil and let it cool. I use a "hot pot" for my sinus rinse water, and boil for 10 mins.</end quote></div>

This is exactly what I do. I have even been known to BOIL the distilled water, as its still not considered "sterile" and that is the water you should use to rinse your nebs and do nasal washes. Boiling tap water is free and as long as you do it for 10 mins., you should be fine to use that to clean, rinse and irrigate. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I boil any and all water that comes into contact with my nebs or that I use for my sinus rinses. I'd just boil and let it cool. I use a "hot pot" for my sinus rinse water, and boil for 10 mins.</end quote></div>

This is exactly what I do. I have even been known to BOIL the distilled water, as its still not considered "sterile" and that is the water you should use to rinse your nebs and do nasal washes. Boiling tap water is free and as long as you do it for 10 mins., you should be fine to use that to clean, rinse and irrigate. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I boil any and all water that comes into contact with my nebs or that I use for my sinus rinses. I'd just boil and let it cool. I use a "hot pot" for my sinus rinse water, and boil for 10 mins.</end quote></div>

This is exactly what I do. I have even been known to BOIL the distilled water, as its still not considered "sterile" and that is the water you should use to rinse your nebs and do nasal washes. Boiling tap water is free and as long as you do it for 10 mins., you should be fine to use that to clean, rinse and irrigate. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I boil any and all water that comes into contact with my nebs or that I use for my sinus rinses. I'd just boil and let it cool. I use a "hot pot" for my sinus rinse water, and boil for 10 mins.</end quote>

This is exactly what I do. I have even been known to BOIL the distilled water, as its still not considered "sterile" and that is the water you should use to rinse your nebs and do nasal washes. Boiling tap water is free and as long as you do it for 10 mins., you should be fine to use that to clean, rinse and irrigate. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
<br />
<br />I boil any and all water that comes into contact with my nebs or that I use for my sinus rinses. I'd just boil and let it cool. I use a "hot pot" for my sinus rinse water, and boil for 10 mins.</end quote>
<br />
<br />This is exactly what I do. I have even been known to BOIL the distilled water, as its still not considered "sterile" and that is the water you should use to rinse your nebs and do nasal washes. Boiling tap water is free and as long as you do it for 10 mins., you should be fine to use that to clean, rinse and irrigate. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>



Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?



Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......



I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!



Be cautious, but dont fret!</end quote></div>

This is perfect advice! These organisms and bacteria are everywhere... soil, water, etc. There are things you can do to protect yourself, yes (i.e. boiling water to use), but there is also a bit of "what will be, will be" that goes along with living. Cautious is great, but worrying about things we cannot control is not. And, for me (a VERY anxious person) to say this is a huge statement. I have decided long ago not to let it bother me that I could be breathing in particles when I shower, could be ingesting bacterias, etc.

And, I've also heard that with regard to CF, if you chew and swallow a bacteria (i.e. cepacia on a food, etc.) it will not likely give you that bacteria... For us, it is the breathing in of particles that lodge in our lungs. So, maybe when you cut into the rotten onion, and it releases its crap into the air, THAT is where we can get it.... not in our stomach. Someone correct me if I'm wrong.

Drinking water with p.a. or other organisms should not, biologically stick around and cause trouble in our lungs. However, breathing in the vapors of water with p.a. COULD cause issues. So, if you drink something, your kidneys, liver, etc. should expell the toxins along with the nutrients just like nature intended. This is what I've heard anyway. Someone correct me if I'm wrong please.

AND, with regard to nasal irrigation, organisms can lodge in our nasal passages (where many a respiratory virus gain entry) and get in through cuts, pores, etc. So, you'd not want to have bacterias in contact with mucus membranes.

I hope this makes sense. I've just always heard that if you BREATHE it with CF, that is where it can get into your lungs and cause issues (or through mucus membranes... eyes, nose, etc.) BUT, if you eat it, it should be filtered out (unless you have issues with filtering via kidneys, etc.). I hope someone steers me clear if I'm mistaken, but a doc once told me this and it has helped considerable for me to not dwell on things I eat, touch, etc.
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>



Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?



Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......



I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!



Be cautious, but dont fret!</end quote></div>

This is perfect advice! These organisms and bacteria are everywhere... soil, water, etc. There are things you can do to protect yourself, yes (i.e. boiling water to use), but there is also a bit of "what will be, will be" that goes along with living. Cautious is great, but worrying about things we cannot control is not. And, for me (a VERY anxious person) to say this is a huge statement. I have decided long ago not to let it bother me that I could be breathing in particles when I shower, could be ingesting bacterias, etc.

And, I've also heard that with regard to CF, if you chew and swallow a bacteria (i.e. cepacia on a food, etc.) it will not likely give you that bacteria... For us, it is the breathing in of particles that lodge in our lungs. So, maybe when you cut into the rotten onion, and it releases its crap into the air, THAT is where we can get it.... not in our stomach. Someone correct me if I'm wrong.

Drinking water with p.a. or other organisms should not, biologically stick around and cause trouble in our lungs. However, breathing in the vapors of water with p.a. COULD cause issues. So, if you drink something, your kidneys, liver, etc. should expell the toxins along with the nutrients just like nature intended. This is what I've heard anyway. Someone correct me if I'm wrong please.

AND, with regard to nasal irrigation, organisms can lodge in our nasal passages (where many a respiratory virus gain entry) and get in through cuts, pores, etc. So, you'd not want to have bacterias in contact with mucus membranes.

I hope this makes sense. I've just always heard that if you BREATHE it with CF, that is where it can get into your lungs and cause issues (or through mucus membranes... eyes, nose, etc.) BUT, if you eat it, it should be filtered out (unless you have issues with filtering via kidneys, etc.). I hope someone steers me clear if I'm mistaken, but a doc once told me this and it has helped considerable for me to not dwell on things I eat, touch, etc.
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>



Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?



Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......



I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!



Be cautious, but dont fret!</end quote></div>

This is perfect advice! These organisms and bacteria are everywhere... soil, water, etc. There are things you can do to protect yourself, yes (i.e. boiling water to use), but there is also a bit of "what will be, will be" that goes along with living. Cautious is great, but worrying about things we cannot control is not. And, for me (a VERY anxious person) to say this is a huge statement. I have decided long ago not to let it bother me that I could be breathing in particles when I shower, could be ingesting bacterias, etc.

And, I've also heard that with regard to CF, if you chew and swallow a bacteria (i.e. cepacia on a food, etc.) it will not likely give you that bacteria... For us, it is the breathing in of particles that lodge in our lungs. So, maybe when you cut into the rotten onion, and it releases its crap into the air, THAT is where we can get it.... not in our stomach. Someone correct me if I'm wrong.

Drinking water with p.a. or other organisms should not, biologically stick around and cause trouble in our lungs. However, breathing in the vapors of water with p.a. COULD cause issues. So, if you drink something, your kidneys, liver, etc. should expell the toxins along with the nutrients just like nature intended. This is what I've heard anyway. Someone correct me if I'm wrong please.

AND, with regard to nasal irrigation, organisms can lodge in our nasal passages (where many a respiratory virus gain entry) and get in through cuts, pores, etc. So, you'd not want to have bacterias in contact with mucus membranes.

I hope this makes sense. I've just always heard that if you BREATHE it with CF, that is where it can get into your lungs and cause issues (or through mucus membranes... eyes, nose, etc.) BUT, if you eat it, it should be filtered out (unless you have issues with filtering via kidneys, etc.). I hope someone steers me clear if I'm mistaken, but a doc once told me this and it has helped considerable for me to not dwell on things I eat, touch, etc.
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>



Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?



Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......



I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!



Be cautious, but dont fret!</end quote>

This is perfect advice! These organisms and bacteria are everywhere... soil, water, etc. There are things you can do to protect yourself, yes (i.e. boiling water to use), but there is also a bit of "what will be, will be" that goes along with living. Cautious is great, but worrying about things we cannot control is not. And, for me (a VERY anxious person) to say this is a huge statement. I have decided long ago not to let it bother me that I could be breathing in particles when I shower, could be ingesting bacterias, etc.

And, I've also heard that with regard to CF, if you chew and swallow a bacteria (i.e. cepacia on a food, etc.) it will not likely give you that bacteria... For us, it is the breathing in of particles that lodge in our lungs. So, maybe when you cut into the rotten onion, and it releases its crap into the air, THAT is where we can get it.... not in our stomach. Someone correct me if I'm wrong.

Drinking water with p.a. or other organisms should not, biologically stick around and cause trouble in our lungs. However, breathing in the vapors of water with p.a. COULD cause issues. So, if you drink something, your kidneys, liver, etc. should expell the toxins along with the nutrients just like nature intended. This is what I've heard anyway. Someone correct me if I'm wrong please.

AND, with regard to nasal irrigation, organisms can lodge in our nasal passages (where many a respiratory virus gain entry) and get in through cuts, pores, etc. So, you'd not want to have bacterias in contact with mucus membranes.

I hope this makes sense. I've just always heard that if you BREATHE it with CF, that is where it can get into your lungs and cause issues (or through mucus membranes... eyes, nose, etc.) BUT, if you eat it, it should be filtered out (unless you have issues with filtering via kidneys, etc.). I hope someone steers me clear if I'm mistaken, but a doc once told me this and it has helped considerable for me to not dwell on things I eat, touch, etc.
 
L

ladybug

New member
<div class="FTQUOTE"><begin quote><i>
<br />
<br />
<br />
<br />Technically Cepacia & PA can be found anywhere. There were reports in 1999 (I think) of Cepacia contaminated bottled water (fruit flavored I think). There is always a risk yet at the same time.....how much of a risk is there?
<br />
<br />
<br />
<br />Remember that for the general public its not an issue, but for us & others who are compromised it can be quite serious. Unfortunately with us being the "orphans" I dont think its at the top of the list for worries to the rest of the world. This is JMHO tho......
<br />
<br />
<br />
<br />I drink bottled water (yes I resuse the bottles) & havent contracted Cepacia. Am I lucky? Is it minimal risk? Dont know, but I wont go through life trying to avoid ALL of the potential areas of risk. We would have to live in a bubble since it is everywhere!
<br />
<br />
<br />
<br />Be cautious, but dont fret!</end quote>
<br />
<br />This is perfect advice! These organisms and bacteria are everywhere... soil, water, etc. There are things you can do to protect yourself, yes (i.e. boiling water to use), but there is also a bit of "what will be, will be" that goes along with living. Cautious is great, but worrying about things we cannot control is not. And, for me (a VERY anxious person) to say this is a huge statement. I have decided long ago not to let it bother me that I could be breathing in particles when I shower, could be ingesting bacterias, etc.
<br />
<br />And, I've also heard that with regard to CF, if you chew and swallow a bacteria (i.e. cepacia on a food, etc.) it will not likely give you that bacteria... For us, it is the breathing in of particles that lodge in our lungs. So, maybe when you cut into the rotten onion, and it releases its crap into the air, THAT is where we can get it.... not in our stomach. Someone correct me if I'm wrong.
<br />
<br />Drinking water with p.a. or other organisms should not, biologically stick around and cause trouble in our lungs. However, breathing in the vapors of water with p.a. COULD cause issues. So, if you drink something, your kidneys, liver, etc. should expell the toxins along with the nutrients just like nature intended. This is what I've heard anyway. Someone correct me if I'm wrong please.
<br />
<br />AND, with regard to nasal irrigation, organisms can lodge in our nasal passages (where many a respiratory virus gain entry) and get in through cuts, pores, etc. So, you'd not want to have bacterias in contact with mucus membranes.
<br />
<br />I hope this makes sense. I've just always heard that if you BREATHE it with CF, that is where it can get into your lungs and cause issues (or through mucus membranes... eyes, nose, etc.) BUT, if you eat it, it should be filtered out (unless you have issues with filtering via kidneys, etc.). I hope someone steers me clear if I'm mistaken, but a doc once told me this and it has helped considerable for me to not dwell on things I eat, touch, etc.
<br />
<br />
 
G

gr33nie

New member
I use the neil med sinus rinse for my son and use the distilled water. My concern is this. Even if I were to use sterile water, the neil med bottles are not sterile, just cleaned with hot soapy water. I wonder if there is the same risk of the cepacia lurking in the actual bottle as in the distilled water?

I have also noticed that it is really hard to find a way to completely dry the neil med bottles after cleaning them.

Any suggestions for that?

Thanks!
 
G

gr33nie

New member
I use the neil med sinus rinse for my son and use the distilled water. My concern is this. Even if I were to use sterile water, the neil med bottles are not sterile, just cleaned with hot soapy water. I wonder if there is the same risk of the cepacia lurking in the actual bottle as in the distilled water?

I have also noticed that it is really hard to find a way to completely dry the neil med bottles after cleaning them.

Any suggestions for that?

Thanks!
 
G

gr33nie

New member
I use the neil med sinus rinse for my son and use the distilled water. My concern is this. Even if I were to use sterile water, the neil med bottles are not sterile, just cleaned with hot soapy water. I wonder if there is the same risk of the cepacia lurking in the actual bottle as in the distilled water?

I have also noticed that it is really hard to find a way to completely dry the neil med bottles after cleaning them.

Any suggestions for that?

Thanks!
 
G

gr33nie

New member
I use the neil med sinus rinse for my son and use the distilled water. My concern is this. Even if I were to use sterile water, the neil med bottles are not sterile, just cleaned with hot soapy water. I wonder if there is the same risk of the cepacia lurking in the actual bottle as in the distilled water?

I have also noticed that it is really hard to find a way to completely dry the neil med bottles after cleaning them.

Any suggestions for that?

Thanks!
 
G

gr33nie

New member
I use the neil med sinus rinse for my son and use the distilled water. My concern is this. Even if I were to use sterile water, the neil med bottles are not sterile, just cleaned with hot soapy water. I wonder if there is the same risk of the cepacia lurking in the actual bottle as in the distilled water?

I have also noticed that it is really hard to find a way to completely dry the neil med bottles after cleaning them.

Any suggestions for that?

Thanks!
 
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