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liz4cps commented on liz4cps's group Prince William Co, VA support group
"BluePoint Medical* holding their next Remedy event on June 4 with Terry Cralle, RN on "Sleep in the Mordern Family".  They will also be checking CPAP machines and providing breakfast. Click on link above for more…"
May 7
Dan Lyons posted a discussion

CPAP & Dry Mouth

In recent months, I have developed extreme dry mouth as a result of the CPAP.  I am a mouth breather when using CPAP.Recently, I saw an advertisement for the symptoms of dry mouth, but as usual, when I need the information to have a discussion with both my primary care  physician and my dentist I haven't seen the ad. Has anyone else seen the ad and can anyone remember the info in the ad?Thanks in advance,DanSee More
Mar 30
richard graham posted a status
"My deductible is double what a machine is online but I can't get the machine set up. Any ideas?"
Mar 10
BeeAsleep posted a status
"Hi all. I am just checking in and saying hi after being gone for a long time. I am doing GREAT! Just got a new machine and mask. Feel like I"
Jan 23
BeeAsleep updated their profile
Jan 23
99 replied to Fred's discussion CPAP - cure worse than the disease
"Do not turn light on as this hinder you from falling asleep or choose red light instead which do not afect your sleep"
Oct 27, 2015
99 left a comment for Joan Williams Rice
"Hi Joan visiting pelham and I have osa"
Oct 27, 2015
99 left a comment for martha crabtree
"Hi maths visiting pelham "
Oct 27, 2015
99 left a comment for Rhonda Harrison
"Hi Rhondda I am visiting pelham and have osa "
Oct 27, 2015
99 posted a discussion

Leaky gut

Do you have a leaky gutHow would you knowA telltale sign for leaky gut is Athletes footI wish to ask do you have or suffer from itThe reason I ask is maybe this is a common denominatorJust text yes or text noAnd if you are the first to text also keep a tallyExample38 yes 0 noYour input would alter the tally39 yes 0 noSo now I will input first1 yes. 0 noSee More
Sep 26, 2015
richard graham posted a status
"For the first time in a while I got a whole night sleep with my machine but woke up beat and left side of my head feels weird, not sure if"
Sep 2, 2015
Brendan Duffy posted a status
"How did you slhttp://blog.aastweb.org/winners-and-losers-food-for-thought-sleep-and-athletic-success?utm_campaign=subscribers&utm_source=hs_"
Jul 9, 2015
Pat Kniel updated their profile
Jul 7, 2015
ZolliStar replied to Fred's discussion CPAP - cure worse than the disease
"I'm wondering: what prompted you to consider whether you have sleep apnea in the first place? Also, waking throughout the night isn't uncommon especially as we (*sigh*) age.  I seem to every 90 minutes or so. This pattern probably…"
Jun 27, 2015
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website:  http://zyppah.com/ I have a MAD (mandibular advancement device). Dr. Steven Park evaluated my mouth and throat (not everyone can use a MAD, it turns out) and pronounced me a candidate for it. The truth?  I…"
Jun 27, 2015
Mary Z replied to ZolliStar's discussion New mouth device on the market
"The link didn't work so me so I couldn't see the product.  I do have experience with a supposedly reliable boil and bite device.  I should know by now I have a small mouth and nothing regular size fits.  I don't think…"
Jun 27, 2015
richard graham replied to ZolliStar's discussion New mouth device on the market
"If I thought something could work other than this lousy cpap that would be awesome"
May 22, 2015
richard graham posted a status
"I moved and have been sick a lot and can't use cpap because of cough and I'm depressed a lot"
Apr 26, 2015
Fred posted a discussion

CPAP - cure worse than the disease

It's ironic that before I was diagnosed with sleep apnea in 2000, I had no problem sleeping 8-9 hours a night. If I did wake up during the night, I had no problem falling right back to sleep, and I wasn't tired during the day.From the first night I brought home the CPAP I haven't had one decent night's sleep. Not one. I don't have any problem falling asleep, but I can't stay asleep. At first I was waking up after 4-5 hours and couldn't get back to sleep for a couple of hours. Now it's more like…See More
Apr 13, 2015
Fred updated their profile
Apr 13, 2015

Just heard from a sleep tech that her sleep center, located within a  highly prestigious hospital in one of America's largest and most affluent metropolitan centers, fills patients humidifiers with tap water on CPAP titrations.  furthermore, a 7 year-old child contracted Legionnaires Disease and died from being titrated with a CPAP humidifier filled with tap water.

Make sure you insist on distilled or reverse osmosis/ purified bottled water for your CPAP titrations in the sleep center.  The life you save may be your own.

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Replies to This Discussion

There  are so many nested comments about distilled water that I can't follow it. To sum it up, why is there such a long discussion  bout using distilled water? It's 89 cents a gallon and lasts quite a while. Play it safe and use distilled for sleeping with, for washing and for rinsing the tank. I never had a buildup or had to replace the chamber using distilled and a bit of vinegar once a week and baby shampoo and distilled to wash and rinse every day.

to some people it is not important but to others it is very important and all for different reasons 

I guess you're right but I'm just doing what the DME told me to do. It's simple and it works for me.

99 said:

to some people it is not important but to others it is very important and all for different reasons 

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

Very interesting, Sherry. Thank you.

Sherry Rachauskas said:

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

sunlight and UV light an act as disinfectant

Exposure to sunlight has been shown to deactivate diarrhea-causing organisms in polluted drinking water. Three effects of solar radiation are believed to contribute to the inactivation of pathogenic organisms:

  • UV-A interferes directly with the metabolism and destroys cell structures of bacteria.
  • UV-A (wavelength 320-400 nm) reacts with oxygen dissolved in the water and produces highly reactive forms of oxygen (oxygen free radicals and hydrogen peroxides) that are believed to also damage pathogens.
  • Cumulative solar energy (including the infrared radiation component) heats the water. If the water temperatures rises above 50°C, the disinfection process is three times faster.

At a water temperature of about 30°C (86°F), a threshold solar irradiance of at least 500 W/m2 (all spectral light) is required for about 5 hours for SODIS to be efficient. This dose contains energy of 555 Wh/m2 in the range of UV-A and violet light, 350 nm-450 nm, corresponding to about 6 hours of mid-latitude (European) midday summer sunshine.

At water temperatures higher than 45°C (113°F), synergistic effects of UV radiation and temperature further enhance the disinfection efficiency

Enrique and others looking for the news story -- i just looked for the news story myself, and didn't turn anything up.  But that means nothing. Especially for those of you who work in the medical field, you know how often physicians and other health care workers make mistakes. . . and how common it is for them to cover them up.  My RN friends tell me cover ups happen all the time.

i think it is twist truth back in1997

where legionaries disease was attributed to a whirl pool

this maybe how they want to explain their version to avoid implicating a CPAP 

OK, here's an official statement on Legionnaire's and water. http://www.state.nj.us/health/cd/legion/documents/legion_icg.pdf 

IOW, use distilled water and regularly sterilize. Yes, it's for a hospital setting but germs are opportunistic in any setting. They do say that immune-compromised people are at higher risk to come down with it.

Sherry:

I told her to dilute the bleach 1 to 5 to kill any bacteria and then wash until the smell goes away. This is what is normally done in hospitals in the USA.

I have asthma for 74 years and have had no problems with this in a dilute form. If you don't like the bleach fumes, you need to stay our of pools as sodium hypochlorite (bleach) is the same chemical used in pools, spas, etc.

Bleach is a 3-6% solution of NaOCl with some sodium hydoxyide to keep it stabilized. A 12% solution is used in municipal water treatment facilities for sterilization in a ratio of 1 to 4000. If you have a well drilled, they will pour down a gallon of household bleach down the well to sterilize the well. You do then let the water run until the smell disappears.

Sodium hypochlorite is one of the most effective disinfectants. Hydrogen peroxide, while definitely not as effective, can be used without dilution as this is nothing but water with an extra oxygen molecule. We used a mixture of hydrogen peroxide and baking soda for years as our tooth paste at the recommendation of our previous dentist to kill the bacteria beneath the gums. This allowed my wife avoid painful gum surgery. I just rather use something stronger at the end of the humidifier season.

Sherry Rachauskas said:

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

Boiling tap water may kill any bacteria or viruses but it also concentrates any contaminants such as chlorine, rust, lead etc.  Please don't use boiled water. Avoid breathing in those concentrated chemicals forced into your lungs all night.  Distilled water is the best water to use.
Jan

Gordon,

 

Not arguing with your advice, just everyone cannot use bleach w/o some problems. You are right, I cannot go in pools or hot tubs because I cannot tolerate the chlorine. I have a compromised immune system and have the markers for some type of immune disorder that has not fully developed yet and am being watched for development.  In my case, peroxide is the better choice. And yes, I do use mine full strength, but was advised to split 50-50 with water for easier rinsing. It just doesn't bother me like bleach does, so I prefer peroxide.  I think this forum is great for discussing all the options, since everyone has a different experience, what works for one, may help someone else, but will not work for everyone. Use the advice, but always discuss with your doctors if you are unsure.


 
Gordon H said:

Sherry:

I told her to dilute the bleach 1 to 5 to kill any bacteria and then wash until the smell goes away. This is what is normally done in hospitals in the USA.

I have asthma for 74 years and have had no problems with this in a dilute form. If you don't like the bleach fumes, you need to stay our of pools as sodium hypochlorite (bleach) is the same chemical used in pools, spas, etc.

Bleach is a 3-6% solution of NaOCl with some sodium hydoxyide to keep it stabilized. A 12% solution is used in municipal water treatment facilities for sterilization in a ratio of 1 to 4000. If you have a well drilled, they will pour down a gallon of household bleach down the well to sterilize the well. You do then let the water run until the smell disappears.

Sodium hypochlorite is one of the most effective disinfectants. Hydrogen peroxide, while definitely not as effective, can be used without dilution as this is nothing but water with an extra oxygen molecule. We used a mixture of hydrogen peroxide and baking soda for years as our tooth paste at the recommendation of our previous dentist to kill the bacteria beneath the gums. This allowed my wife avoid painful gum surgery. I just rather use something stronger at the end of the humidifier season.

Sherry Rachauskas said:

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

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