During my recent Clinic visit my CF doctor informed me of the dangers of using distilled water. He informed me that I should in no way use-distilled water for the cleansing of nebulizer (sp?) parts nor should it be used in conjunction with my oxygen machine. He explained to me the risk of contracting B. Cepacia through the water. Apparently, there are no standards in place concerning B Cepacia when it comes to the manufacturing process that creates distilled water. I strongly recommend the use of hospital grade sterilized water for your CF care needs.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Distilled Water Danger!
- Thread starter Prussian
- Start date
thelizardqueen
New member
Distilled water is like bottled water right?
Distilled water is made through the process of evaporating water and then collecting the condensation from that water. It is supposed to be much purer than standard water. The process is not regulated for B Cepacia however and it (Cepacia) has been found on the equipment used for this process. Ask your doctor as to which kind of water you should be using for CF care or ask PARI.
thelizardqueen
New member
According to the CFF, the only water you should be washing with is sterile water i.e. boiled water. You can wash your nebs with hot tap water and soap - so long as you rinse them with sterile water, or boil them.
chantelfox
New member
OH GREAT! I have been using distilled water for a year now to wash
out my sinuses with this pre-packaged sinus rinse stuff. My sinus
Dr. told me to after my last surgery. Effin great!! Seems
like everything suggested to fix one part of this disease causes
another even bigger problem...I AM SO SICK OF
THIS!!!!!!!!!!!!!!!!!!
out my sinuses with this pre-packaged sinus rinse stuff. My sinus
Dr. told me to after my last surgery. Effin great!! Seems
like everything suggested to fix one part of this disease causes
another even bigger problem...I AM SO SICK OF
THIS!!!!!!!!!!!!!!!!!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chantelfox</b></i>
OH GREAT! I have been using distilled water for a year now to wash
out my sinuses with this pre-packaged sinus rinse stuff. My sinus
Dr. told me to after my last surgery. Effin great!! Seems
like everything suggested to fix one part of this disease causes
another even bigger problem...I AM SO SICK OF
THIS!!!!!!!!!!!!!!!!!!</end quote></div>
Tell me about it! I was using distilled water in my oxygen before I learned of the danger.
Prussian
OH GREAT! I have been using distilled water for a year now to wash
out my sinuses with this pre-packaged sinus rinse stuff. My sinus
Dr. told me to after my last surgery. Effin great!! Seems
like everything suggested to fix one part of this disease causes
another even bigger problem...I AM SO SICK OF
THIS!!!!!!!!!!!!!!!!!!</end quote></div>
Tell me about it! I was using distilled water in my oxygen before I learned of the danger.
Prussian
princessjdc
New member
I have only used distilled water two weeks ago, when I went on my cruise, because I didnt have any boiled water with me and I didnt want to bother the Room Attendant, or whatever for boiled water, plus who knew what they could of done with it. I hope I didnt get b.cepacia for me only using distilled for one wk, at home I always boil my water for my sinus rinse stuff.
Hmmm...
So, I've been BOILING my treatment parts in distilled and bottled water for years cause our tap water leaves a white residue on them. So, is it bad to use it to BOIL parts in??? Wouldn't the boiling kill what is in the water as well???
This is very frustrating. It is virtually impossible for me to get a large enough amount of sterile water from the clinic or anywhere that I know of to be able to use it to boil every treatment. I go through nearly a gallon every other day!
Anyone know if its safe to BOIL in bottled and/or distilled?
Thanks,
So, I've been BOILING my treatment parts in distilled and bottled water for years cause our tap water leaves a white residue on them. So, is it bad to use it to BOIL parts in??? Wouldn't the boiling kill what is in the water as well???
This is very frustrating. It is virtually impossible for me to get a large enough amount of sterile water from the clinic or anywhere that I know of to be able to use it to boil every treatment. I go through nearly a gallon every other day!
Anyone know if its safe to BOIL in bottled and/or distilled?
Thanks,
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>
Hmmm...
So, I've been BOILING my treatment parts in distilled and bottled water for years cause our tap water leaves a white residue on them. So, is it bad to use it to BOIL parts in??? Wouldn't the boiling kill what is in the water as well???
This is very frustrating. It is virtually impossible for me to get a large enough amount of sterile water from the clinic or anywhere that I know of to be able to use it to boil every treatment. I go through nearly a gallon every other day!
Anyone know if its safe to BOIL in bottled and/or distilled?
Thanks,</end quote></div>
no, you're good. you can boil any type of water for 10 minutes and kill all bacteria.
-amy
Hmmm...
So, I've been BOILING my treatment parts in distilled and bottled water for years cause our tap water leaves a white residue on them. So, is it bad to use it to BOIL parts in??? Wouldn't the boiling kill what is in the water as well???
This is very frustrating. It is virtually impossible for me to get a large enough amount of sterile water from the clinic or anywhere that I know of to be able to use it to boil every treatment. I go through nearly a gallon every other day!
Anyone know if its safe to BOIL in bottled and/or distilled?
Thanks,</end quote></div>
no, you're good. you can boil any type of water for 10 minutes and kill all bacteria.
-amy
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I also have been using distilled water to wash out Aidan's sinuses daily! SO what do I do?
I always boil his neb pieces though...</end quote></div>
you buy sterile water or you boild regular water for 10 minutes and then rinse his sinuses.
-amy
I also have been using distilled water to wash out Aidan's sinuses daily! SO what do I do?
I always boil his neb pieces though...</end quote></div>
you buy sterile water or you boild regular water for 10 minutes and then rinse his sinuses.
-amy
thelizardqueen
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
This is Chantelfox..Im not signed in..but...where are you finding this info on the CFF website. I can never find any info about what to do and not do on there???</end quote></div>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/living_with_cf/Files/Respiratory%20--%20Stopping%20the%20Spread%20of%20Germs.pdf">http://www.cff.org/UploadedFil...pread%20of%20Germs.pdf</a>
This is Chantelfox..Im not signed in..but...where are you finding this info on the CFF website. I can never find any info about what to do and not do on there???</end quote></div>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/living_with_cf/Files/Respiratory%20--%20Stopping%20the%20Spread%20of%20Germs.pdf">http://www.cff.org/UploadedFil...pread%20of%20Germs.pdf</a>
Scarlett81
New member
Ok This is a really good thing that this has been brought up. I remember reading this somewhere once and thought about it, but then forgot about the seriousness of it. But FYI, almost every naturopathic doc or nutritionist will tell you to drink only distilled water b/c its considered the "emptiest" form of water and is best for detoxifying. Almost every natural cleanse I've done, they've said to only use distilled water.
Now I know to never use it again, since it's come up here.
Man this place keeps giving me valuable advice!
I do alot of natural stuff, so if any of you do too, I guess this is a good thing to keep in mind.
Now I know to never use it again, since it's come up here.
Man this place keeps giving me valuable advice!
I do alot of natural stuff, so if any of you do too, I guess this is a good thing to keep in mind.