Concern over Legionnaires Disease?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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MissMiaMoodles
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Concern over Legionnaires Disease?

Post by MissMiaMoodles » Wed Oct 24, 2007 1:19 pm

I started CPAP about 7 weeks ago. With a lot of anxiety and the help and support of this website I have made it through the initial adjustment period. It is a work in progress.

I want to mention that at the begining I was a big worrywart. Anything and everything I worried about.

Somewhere along the way I heard about someone concerned about Legionnaires Disease. Well I took that and ran with it...(yup, I worried). So about 3 weeks into cpap therapy I went on the CDC website to find out information and a section to write and ask questions.

The question I wrote and asked was..

I have a question about Legionnaires Disease with a CPAP.
I have the Remstar Pro C-flex w/Smart Card & Heated Humidifier. I am a
new user and I am very nervous about this. I read the manual about
cleaning and do clean the mask & Humidifier every day. I do not clean
the hose evry day (Once a week)I still cant really get any fo about this
from my Doc's Office or my RT. I just wanted to know if there are
others who have gotten Legionnaires Disease from a CPAP.Please advise.

They sent me an email today........

Ms. --

There have been reports made to the CDC about this issue, and there is a
possible association between CPAP users and legionellosis. The reasons
for this association are thought to be:
1) Those who are on CPAP already have an underlying lung disease
(and may even be on steroids, causing further immunocompromise)
2) The machines were being cleaned with tap water.

Therefore, I would recommend that this person clean her CPAP machine
with sterile or distilled water.

Thank you for your inquiry.

Barbara Govert for NIPINFO
Division of Bacterial Diseases
National Center for Immunization and Respiratory Diseases/Centers for
Disease Control and Prevention

[/i]

Well, I had stopped being a worry wart learning from all of you. Until I got this email back.

I think it is quite funny that it took 4 weeks for them to respond. IMHO I think that even if there were reports it dosent neccsarily mean it was from CPAP.

I just thought I would share this information.

MissMiaMoodles
AKA Trissy612


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JeffH
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Post by JeffH » Wed Oct 24, 2007 1:21 pm

itty bitty tiny thing to worry about vs. the health issues that you will suffer if you DON'T use your machine.

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Wulfman
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Post by Wulfman » Wed Oct 24, 2007 1:36 pm

It says right in their response to use........."Distilled water"
Your humidifier manual says to only use...."Distilled water"

If you use only distilled water.....no problems.

Den

(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
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greyhound
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Post by greyhound » Wed Oct 24, 2007 2:12 pm

I know I'm in the minority, and even though I'm far from a "clean freak", I empty and clean my humidifier (almost) every day.

If you've any concerns, just empty your humidifier daily. After all, you wouldn't want to lose any sleep over worrying about Legionaire's disease.


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MissMiaMoodles
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Post by MissMiaMoodles » Wed Oct 24, 2007 2:15 pm

I am not worried about this anymore..I have gone on to worry about something else...lol Worry free and happy!

And yes I do use distilled water.

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WearyOne
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Re: Concern over Legionnaires Disease?

Post by WearyOne » Wed Oct 24, 2007 2:43 pm

MissMiaMoodles wrote: {snip}

They sent me an email today........

Ms. --

There have been reports made to the CDC about this issue, and there is a
possible association between CPAP users and legionellosis. The reasons
for this association are thought to be:
1) Those who are on CPAP already have an underlying lung disease
(and may even be on steroids, causing further immunocompromise)
2) The machines were being cleaned with tap water.

Therefore, I would recommend that this person clean her CPAP machine
with sterile or distilled water.


Thank you for your inquiry.

Barbara Govert for NIPINFO
Division of Bacterial Diseases
National Center for Immunization and Respiratory Diseases/Centers for
Disease Control and Prevention
They're talking about using distilled or sterilized water to CLEAN the machine. I have never CLEANED my masks and humidifier with anything but tap water. I DO use distilled water IN the humidifier. And there's nothing in my mask manual or the humidifier manual saying to use distilled/sterilized water for CLEANING.

Humidifier manual says:

"Wash in a solution of warm water and a mild dishwashing detergent. Rinse the parts with clean water and allow them to air dry."

Should we be cleaning in distilled water as well?

Pam

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, humidifier, CPAP, clean


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Goofproof
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Post by Goofproof » Wed Oct 24, 2007 2:50 pm

About as high a chanch of getting it from XPAP, as Bush getting France to instate a Draft and take over for us in War. Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

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Perchancetodream
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Re: Concern over Legionnaires Disease?

Post by Perchancetodream » Wed Oct 24, 2007 3:01 pm

WearyOne wrote:
They're talking about using distilled or sterilized water to CLEAN the machine. I have never CLEANED my masks and humidifier with anything but tap water. I DO use distilled water IN the humidifier. And there's nothing in my mask manual or the humidifier manual saying to use distilled/sterilized water for CLEANING.

Humidifier manual says:

"Wash in a solution of warm water and a mild dishwashing detergent. Rinse the parts with clean water and allow them to air dry."

Should we be cleaning in distilled water as well?

Pam

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It looks like that is what she is saying, but as long as you are following the instructions from the manual I don't think you are in much, if any, danger. The key is to wash it in warm water with soap and air dry it. Someone once mentioned that he used distilled water as a final rinse which probably wouldn't hurt, but most bacteria will be killed with warm water and soap (not anti-bacterial soap).

Susan

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CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, clean


Guest

Post by Guest » Wed Oct 24, 2007 3:21 pm

I use vinegar once or twice a week. 1/2 vinegar, 1/2 water, 1/2 an hour. That's what the DME said and I do it after reading a couple of stories where people had mold or pink scum growing in their. Plenty of people don't ,but it just makes me feel better. Most of the things the RT at the DME said were off base though. . .

so maybe I'm using all that vinegar for nothing . I use it to clean other things afterwards though, since I use baking soda and vinegar for many cleaning tasks around the house..


Guest

Post by Guest » Wed Oct 24, 2007 3:32 pm

Goofproof,

ROFL!!!!!


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gasparama
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Re: Concern over Legionnaires Disease?

Post by gasparama » Wed Oct 24, 2007 3:33 pm

[/quote
It looks like that is what she is saying, but as long as you are following the instructions from the manual I don't think you are in much, if any, danger. The key is to wash it in warm water with soap and air dry it. Someone once mentioned that he used distilled water as a final rinse which probably wouldn't hurt, but most bacteria will be killed with warm water and soap (not anti-bacterial soap).

Susan]

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I've used tap water for washing, but I always rinse everything with distilled water because the water here is so terribly hard. We have quite a problem with the mineral buildup on everything that the water touches.

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socknitster
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Post by socknitster » Wed Oct 24, 2007 5:14 pm

First of all, if you are CLEANING the machine, you are removing any large pockets of bacteria or other organisms that could cause a problem.

Legionaires is usually found in places where the air conditioning is not drained properly (like a window unit that is level instead of tilted to let the water run out) and the stagnant water inside breeds microorganisms and then the ac fan blows a fine mist of this into the air.

I can see how a person who worries could get spooked. But honestly, if you use distilled water, nothing is going to grow in it. And most of us are refilling it each day. If you see something cloudy, dump it out, wash it and let it air dry--another way to kill a good portion of bugs is to let it thoroughly dry. I'm guilty of just refilling mine with distilled every day. And rarely drying it, but if I were worried or had immune or lung problems I would probably dump and dry every day, just to be sure. Distilled water is pretty cheap.

The tiny residue of tap water that would be on it (highly chorinated tapwater to-boot) is not going to have enough junk in it to do any harm to you.

The real worry would be if you ignored black crusties, pink crusties and cloudy water and kept refilling it. THEN you might be at risk for something. But poor sense would be at the top of my list of your ailments if that were the problem you had. My RT says she has seen humidifier chambers like that. I can't believe someone would let that go like that!

Jen


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shippy
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Post by shippy » Wed Oct 24, 2007 6:34 pm

Funny this topic should come up but i took a four day business trip to Savannah Ga. back in early June. I commented to my wife before i left Gee ! i hope i don't get Leggionnaires turned out when i got there it was 9.30 at night and the only store open was a little convienience market, they didn't have any distilled and i bought purified drinking water for the humidifier. Weather was hot and muggy correct me if i am wrong but the first case back when was in Atlanta. Call me nutty for thinking about it at the time but i survived and still here ha! ha!

Dale


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Moby
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Post by Moby » Wed Oct 24, 2007 7:50 pm

socknitster wrote:F


The real worry would be if you ignored black crusties, pink crusties and cloudy water and kept refilling it. THEN you might be at risk for something. But poor sense would be at the top of my list of your ailments if that were the problem you had. My RT says she has seen humidifier chambers like that. I can't believe someone would let that go like that!
My optician told me of a client complaining of repeated eye infections. When she asked to see his contact lens case is was full of green slime. He didn't bother himself with its hygiene *at all*

(looking for vomit emoticon)


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Re: Concern over Legionnaires Disease?

Post by sgrol » Wed Oct 24, 2007 9:12 pm

[quote="Perchancetodream"][quote="WearyOne"]

Someone once mentioned that he used distilled water as a final rinse which probably wouldn't hurt, but most bacteria will be killed with warm water and soap (not anti-bacterial soap).

Susan

What's wrong with antibacterial soap? I've been using it for cleaning/soaking tubing and mask parts for years.