Practical questions about nebulizer, shower head filters & gargling

Posted by terryb1 @128128terry11t, Dec 20, 2017

This forum is so helpful and I thank all for their contributions. I have three questions:
1. Do we have to rinse the aerobika or nebulizer in distilled water after we soak in plain sudsy water or can we just rinse in regular water for our daily cleaning? I ask because lugging distilled water can be cumbersome and I would love to skip the use of distilled water if it is unnecessary.
2. For those who have put a filter(s) on their shower head so that showering can be the equivalent of bathing, please let us know specifically what filter or filters you installed and any other information that would be helpful for us to know.
3. Was anyone advised to gargle after using inhaled amikacin? If so, was any particular mouthwash recommended?
As always, thank you and wishing all a Merry Christmas and a Happy and Healthier New Year. Terry

Liked by loveblue

@128128terry11t

Thank you to those who have responded to my questions. I look forward to other responses. I emailed Dr. Falkinham (well known and respected microbiologist who lectures on NTMs) and asked him the questions about using distilled water to rinse the equipment, cleaning aerobika/nebulizer just once a day, and recommendations for shower head. The following is his response:
Dear Terry:

Here are a few answers.

Question 1. Yes, it is important to ensure that the water added to a nebulizer after disinfection is as sterile as possible. Rather than buying sterile water, simply boil the necessary volume of water on the stove, let it cool before adding it to the instrument. Use that water for rinsing and final filling. Rinsing with regular tap water will likely “inoculate” the nebulizer with NTM. Remember, regular drinking water has NTM. Also, distilled water is not sterile.

Question 2. If the instrument has been filled initially with sterile water it is probably all right to not clean/disinfect before the next use. However, remember, that it is possible to “inoculate” the nebulizer with your own sputum.

Question 3. Shower heads can be unscrewed and cleaned by scrubbing the inside as best you can and then submerging the shower head in Chlorox for 30 min. Alternatively, you can filter the water before it enters the shower head. Pall Medical makes 0.2 micrometer pore size filters and those prevent passage of NTM (we’ve confirmed). However, the 0.2 micrometer pore size filters clog easily, so we recommend adding a 5 micrometer pore size filter before the water passes to the 0.2 micro meter filter. The Pall filters are expensive and good for 30 or 60 days, so if possible, I would simply scrub out a standard shower head and disinfect in Chlorix for 30 minutes monthly.

Further, some shower heads have a fine spray and generate a great deal of mist that stays in the air of the bathroom. That is not so good as the NTM are in the aerosol. Look around for a shower head with large holes that generates streams (usually 1-2 mm diameter holes). That will not generate the mist that can enter the farthest reaches of your lungs. Big drops are better.

Let me know if you have further questions.

Merry Christmas and Happy New Year,

Joe

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@heathert, thank you Heather for posting that it needs to be 10% strength. Is that 10% meaning the other 80% is water?

Oh! I think I misunderstood and thought that you used the vinegar for daily cleaning. It sounds like you use the vinegar when you clean before you sterilize which can certainly be only once a week. Am I now finally correct?? Also, do you dilute the vinegar with equal part boiled water? Looking forward to answer from another member of the forum as to what 10% strength of vinegar means. Thanks again.

@128128terry11t

@windwaker, Thanks for the tip. Do you use distilled white vinegar? I am a little (well, maybe a lot) confused about how a gallon lasts a long time. Don’t you have to put quite a bit of the vinegar in a bowl in order to adequately soak? If someone does this daily, I would imagine that a gallon would go fairly quickly unless it is diluted with some boiled water?? …. and if you use an aerobika with nebulizer, even faster. When you stated that you were not super diligent, did you mean that sometimes you clean/rinse in boiled water? By the way, what is a “spacer”? Your knowledge and advice is much appreciated.

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I read that 6% vinegar kills mac
wal mart sells this in their cooking section next to 5% vinegar. it will say the percentage of acid on the bottle.

@128128terry11t . I bought 80% food grade acteic acid and then dilute it was water down to 10%, I bought it from an eccochem business. I had read on a reputable site that we need 10%, I dont know if that has changed or not now.

@128128terry11t

Thank you to those who have responded to my questions. I look forward to other responses. I emailed Dr. Falkinham (well known and respected microbiologist who lectures on NTMs) and asked him the questions about using distilled water to rinse the equipment, cleaning aerobika/nebulizer just once a day, and recommendations for shower head. The following is his response:
Dear Terry:

Here are a few answers.

Question 1. Yes, it is important to ensure that the water added to a nebulizer after disinfection is as sterile as possible. Rather than buying sterile water, simply boil the necessary volume of water on the stove, let it cool before adding it to the instrument. Use that water for rinsing and final filling. Rinsing with regular tap water will likely “inoculate” the nebulizer with NTM. Remember, regular drinking water has NTM. Also, distilled water is not sterile.

Question 2. If the instrument has been filled initially with sterile water it is probably all right to not clean/disinfect before the next use. However, remember, that it is possible to “inoculate” the nebulizer with your own sputum.

Question 3. Shower heads can be unscrewed and cleaned by scrubbing the inside as best you can and then submerging the shower head in Chlorox for 30 min. Alternatively, you can filter the water before it enters the shower head. Pall Medical makes 0.2 micrometer pore size filters and those prevent passage of NTM (we’ve confirmed). However, the 0.2 micrometer pore size filters clog easily, so we recommend adding a 5 micrometer pore size filter before the water passes to the 0.2 micro meter filter. The Pall filters are expensive and good for 30 or 60 days, so if possible, I would simply scrub out a standard shower head and disinfect in Chlorix for 30 minutes monthly.

Further, some shower heads have a fine spray and generate a great deal of mist that stays in the air of the bathroom. That is not so good as the NTM are in the aerosol. Look around for a shower head with large holes that generates streams (usually 1-2 mm diameter holes). That will not generate the mist that can enter the farthest reaches of your lungs. Big drops are better.

Let me know if you have further questions.

Merry Christmas and Happy New Year,

Joe

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@windwalker yes, I bought 80% food grade acetic acid and dilute it, I sent Kathryn the site but dont know it I will still be able to find it on the web ,will have a look, it will be on this site somewhere. The % is very important or its no use.

Where is a good and reliable place to purchase 10% acetic acid? For those who dilute: is it equal parts vinegar to boiled water? If you use it daily to clean aerobika and nebulizer(s), approximately how long would a gallon last? Please direct many of us to the sites that discuss the use of acetic acid for our needs. Much appreciated and thank you.

@windwalker you have no idea how much I needed to read your post today. I am 49 & have been diagnosed with UIL & ILD. My disease has progressed rather quickly. I have a job that I absolutely love but I am battling & sickness & weight loss. This is so darn hard. I feel worthless & weak & old & feel a burden to my sister. I am trying not to get down but my bad days seem to be outnumbering the good ones. I don’t want to be a “Debbie Downer” or negative. Help! I could use any advice

Liked by america

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes….Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

@loveblue Yee gads! If we are not crazy yet, this will end that journey! The only thing that is for certain is … that nothing is for certain. I have been microwaving the aerobika and baby bottle sterilizing the nebulizers once a week in addition to daily cleaning. Sounds like you sterilize daily — is that correct? I can’t imagine that doing it either way for all the equipment is inadequate. As far as the vinegar is concerned, NJ therapist said that once/month in vinegar is helpful to remove any buildup. I do the 2 cups vinegar to 2 cups distilled water so that I can soak all equipment at same time. If anyone else has a thought on this, it would be greatly appreciated. Terry

@128128terry11t

Thank you to those who have responded to my questions. I look forward to other responses. I emailed Dr. Falkinham (well known and respected microbiologist who lectures on NTMs) and asked him the questions about using distilled water to rinse the equipment, cleaning aerobika/nebulizer just once a day, and recommendations for shower head. The following is his response:
Dear Terry:

Here are a few answers.

Question 1. Yes, it is important to ensure that the water added to a nebulizer after disinfection is as sterile as possible. Rather than buying sterile water, simply boil the necessary volume of water on the stove, let it cool before adding it to the instrument. Use that water for rinsing and final filling. Rinsing with regular tap water will likely “inoculate” the nebulizer with NTM. Remember, regular drinking water has NTM. Also, distilled water is not sterile.

Question 2. If the instrument has been filled initially with sterile water it is probably all right to not clean/disinfect before the next use. However, remember, that it is possible to “inoculate” the nebulizer with your own sputum.

Question 3. Shower heads can be unscrewed and cleaned by scrubbing the inside as best you can and then submerging the shower head in Chlorox for 30 min. Alternatively, you can filter the water before it enters the shower head. Pall Medical makes 0.2 micrometer pore size filters and those prevent passage of NTM (we’ve confirmed). However, the 0.2 micrometer pore size filters clog easily, so we recommend adding a 5 micrometer pore size filter before the water passes to the 0.2 micro meter filter. The Pall filters are expensive and good for 30 or 60 days, so if possible, I would simply scrub out a standard shower head and disinfect in Chlorix for 30 minutes monthly.

Further, some shower heads have a fine spray and generate a great deal of mist that stays in the air of the bathroom. That is not so good as the NTM are in the aerosol. Look around for a shower head with large holes that generates streams (usually 1-2 mm diameter holes). That will not generate the mist that can enter the farthest reaches of your lungs. Big drops are better.

Let me know if you have further questions.

Merry Christmas and Happy New Year,

Joe

Jump to this post

My vinegar isnt 10% but I heat it in the microwave. Would that be equivalent?

@128128terry11t

Thank you to those who have responded to my questions. I look forward to other responses. I emailed Dr. Falkinham (well known and respected microbiologist who lectures on NTMs) and asked him the questions about using distilled water to rinse the equipment, cleaning aerobika/nebulizer just once a day, and recommendations for shower head. The following is his response:
Dear Terry:

Here are a few answers.

Question 1. Yes, it is important to ensure that the water added to a nebulizer after disinfection is as sterile as possible. Rather than buying sterile water, simply boil the necessary volume of water on the stove, let it cool before adding it to the instrument. Use that water for rinsing and final filling. Rinsing with regular tap water will likely “inoculate” the nebulizer with NTM. Remember, regular drinking water has NTM. Also, distilled water is not sterile.

Question 2. If the instrument has been filled initially with sterile water it is probably all right to not clean/disinfect before the next use. However, remember, that it is possible to “inoculate” the nebulizer with your own sputum.

Question 3. Shower heads can be unscrewed and cleaned by scrubbing the inside as best you can and then submerging the shower head in Chlorox for 30 min. Alternatively, you can filter the water before it enters the shower head. Pall Medical makes 0.2 micrometer pore size filters and those prevent passage of NTM (we’ve confirmed). However, the 0.2 micrometer pore size filters clog easily, so we recommend adding a 5 micrometer pore size filter before the water passes to the 0.2 micro meter filter. The Pall filters are expensive and good for 30 or 60 days, so if possible, I would simply scrub out a standard shower head and disinfect in Chlorix for 30 minutes monthly.

Further, some shower heads have a fine spray and generate a great deal of mist that stays in the air of the bathroom. That is not so good as the NTM are in the aerosol. Look around for a shower head with large holes that generates streams (usually 1-2 mm diameter holes). That will not generate the mist that can enter the farthest reaches of your lungs. Big drops are better.

Let me know if you have further questions.

Merry Christmas and Happy New Year,

Joe

Jump to this post

@luvocean good thinking, it would increase the percent of acetic acid.

@128128terry11t

Thank you to those who have responded to my questions. I look forward to other responses. I emailed Dr. Falkinham (well known and respected microbiologist who lectures on NTMs) and asked him the questions about using distilled water to rinse the equipment, cleaning aerobika/nebulizer just once a day, and recommendations for shower head. The following is his response:
Dear Terry:

Here are a few answers.

Question 1. Yes, it is important to ensure that the water added to a nebulizer after disinfection is as sterile as possible. Rather than buying sterile water, simply boil the necessary volume of water on the stove, let it cool before adding it to the instrument. Use that water for rinsing and final filling. Rinsing with regular tap water will likely “inoculate” the nebulizer with NTM. Remember, regular drinking water has NTM. Also, distilled water is not sterile.

Question 2. If the instrument has been filled initially with sterile water it is probably all right to not clean/disinfect before the next use. However, remember, that it is possible to “inoculate” the nebulizer with your own sputum.

Question 3. Shower heads can be unscrewed and cleaned by scrubbing the inside as best you can and then submerging the shower head in Chlorox for 30 min. Alternatively, you can filter the water before it enters the shower head. Pall Medical makes 0.2 micrometer pore size filters and those prevent passage of NTM (we’ve confirmed). However, the 0.2 micrometer pore size filters clog easily, so we recommend adding a 5 micrometer pore size filter before the water passes to the 0.2 micro meter filter. The Pall filters are expensive and good for 30 or 60 days, so if possible, I would simply scrub out a standard shower head and disinfect in Chlorix for 30 minutes monthly.

Further, some shower heads have a fine spray and generate a great deal of mist that stays in the air of the bathroom. That is not so good as the NTM are in the aerosol. Look around for a shower head with large holes that generates streams (usually 1-2 mm diameter holes). That will not generate the mist that can enter the farthest reaches of your lungs. Big drops are better.

Let me know if you have further questions.

Merry Christmas and Happy New Year,

Joe

Jump to this post

Hi Terri, I did ask this on another thread but do you know if hot water temps above 130 are okay or should it be 140? I’ve read both. Of can you ask Joe? Mine is too low I just learned. Thanks! Jen

@128128terry11t

Thank you to those who have responded to my questions. I look forward to other responses. I emailed Dr. Falkinham (well known and respected microbiologist who lectures on NTMs) and asked him the questions about using distilled water to rinse the equipment, cleaning aerobika/nebulizer just once a day, and recommendations for shower head. The following is his response:
Dear Terry:

Here are a few answers.

Question 1. Yes, it is important to ensure that the water added to a nebulizer after disinfection is as sterile as possible. Rather than buying sterile water, simply boil the necessary volume of water on the stove, let it cool before adding it to the instrument. Use that water for rinsing and final filling. Rinsing with regular tap water will likely “inoculate” the nebulizer with NTM. Remember, regular drinking water has NTM. Also, distilled water is not sterile.

Question 2. If the instrument has been filled initially with sterile water it is probably all right to not clean/disinfect before the next use. However, remember, that it is possible to “inoculate” the nebulizer with your own sputum.

Question 3. Shower heads can be unscrewed and cleaned by scrubbing the inside as best you can and then submerging the shower head in Chlorox for 30 min. Alternatively, you can filter the water before it enters the shower head. Pall Medical makes 0.2 micrometer pore size filters and those prevent passage of NTM (we’ve confirmed). However, the 0.2 micrometer pore size filters clog easily, so we recommend adding a 5 micrometer pore size filter before the water passes to the 0.2 micro meter filter. The Pall filters are expensive and good for 30 or 60 days, so if possible, I would simply scrub out a standard shower head and disinfect in Chlorix for 30 minutes monthly.

Further, some shower heads have a fine spray and generate a great deal of mist that stays in the air of the bathroom. That is not so good as the NTM are in the aerosol. Look around for a shower head with large holes that generates streams (usually 1-2 mm diameter holes). That will not generate the mist that can enter the farthest reaches of your lungs. Big drops are better.

Let me know if you have further questions.

Merry Christmas and Happy New Year,

Joe

Jump to this post

Just reviewed my notes from my first conversation. He stated to keep temperature “above 130 degrees”. So, sounds like the magic number is 130. Let’s accumulate some questions and I will be happy to ask him those questions. He is such a lovely man and willing to speak with anyone. Terry

@ppeschke

@windwalker you have no idea how much I needed to read your post today. I am 49 & have been diagnosed with UIL & ILD. My disease has progressed rather quickly. I have a job that I absolutely love but I am battling & sickness & weight loss. This is so darn hard. I feel worthless & weak & old & feel a burden to my sister. I am trying not to get down but my bad days seem to be outnumbering the good ones. I don’t want to be a “Debbie Downer” or negative. Help! I could use any advice

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@ppeschke, I am so sorry, I am just now seeing this for the first time or I would have gotten back to you sooner! Please update me with what is going on with you today? Did you apply for disability yet? If you have not, please do so today or asap. You can do it online. It will at least get the ball rolling for you. Applying IS date sensitive. You will be retro-compensated back to the date that you apply on. I am very worried about you.

@loveblue

I am astounded at the confusion surrounding cleaning of the nebulizer. I think even the experts change their minds frequently. I was told at National Jewish last fall that Dawn liquid detergent was the chosen cleaner over vinegar and if equipment is dry after cleaning, there is no chance of reinfecting with MAC. So why would it matter about rinsing with boiled water? I bought a baby sterilizer and now NJ says the preferred method is microwaving. My daily process has been to let the arobika and nebulizing equipment soak about 15 minutes in warm water with Dawn liquid detergent. Rinsing with regular water then using the bottle sterilizer for 8 minutes with distilled water. Then I put a nail fan on the parts to dry them. Yikes….Now I am concerned once again about what to do. Boiling water seems like a LOT of work.

Jump to this post

@loveblue, I believe that your cleaning methods are sufficient. If I were a resident of Wisconsin, then I would never use tap water for any part of my cleaning as the water there seems to have the highest incidence of mac.

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