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terryb1
@128128terry11t

Posts: 178
Joined: Jan 07, 2017

bacteria and water filter

Posted by @128128terry11t, May 30, 2017

Does anyone know if getting a water filter for the entire house can take the place of using distilled water for those of us who wish to rinse aerobika/nebulizer in distilled water after it soaks in sudsy regular water? Can’t believe how much distilled water I have to purchase! What about using a refrigerator with a water filter — is that just as good? Are the bacteria filtered out to any great extent in shower heads and other faucets? Terry

REPLY

@128128terry11t, Terry, it was easy to grab from my Filing Cabinet the below .. hope it helps you make your own decision. Hugs to all! Katherine

FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A

(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom…maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09

@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo’s note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT’S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

FILTERED RERIGERATOR WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.

Terry, in regards to ” distilled water for those of us who wish to rinse aerobika/nebulizer in distilled water after it soaks in sudsy regular water?” .. since I steralize my Aerobika using the below method .. I have not used distilled water .. but that is just me .. from my File Cabinet:

I can ONLY speak for myself .. I follow the cleaning method on the Aerobika website: https://www.monaghanmed.com/patients-education .. the same one that came with the Aerobika.
1. I use very warm water .. I use a 4 cup plastic measuring cup to wash the various parts .. I like the cup handle as I agitate the parts I am cleaning!

Norpro 4-Cup Plastic Measuring Cup https://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1493589199&sr=8-1&keywords=4+CUP+measure+plastic

I USE THE: The First Years Power of Steam Electric Steam Sterilizer (I remove ONE shelve & make the bottom shelf TALLER to accommodate the tall nebulizer with two other more narrow shelves) https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water.
2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap.
3. I then toss them into the large round center baby sterilizer with the drainage holes at the bottom for storage (that I have removed from the unit) until I am ready to sterilize them all at one time. (This may sound dumb but I store all this equipment in my unused bathtub since I only use my shower!)
4. When I sterilize .. I make SURE I place the AEROBICA on THE TOP SHELF!! After I do sterilize them .. I let the sterilizer cool down. Re assemble and I am good to go! I use distilled water .. I feel it is a good cautionary detail to keep the unit in good condition. If you are unsure you could confirm by calling 800) 833-9653 .. or better yet .. ask your Pulmonologist or respiratory therapist .

I called Aerobika Customer Service directly and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!!

IF you are using inhaled saline (Sodium Chloride Inhalation Solution) with your Aerobika .. I found a good price at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package. I use the same cleaning method.

From Member @jenblalock, Every few days I sterilize by putting in Dr. Browns bags (can get at Amazon) with a few ounces of distilled water and microwaving on high for 2 minutes. https://www.amazon.com/Dr-Browns-Microwave-Steam-Sterilizer/dp/B0035LQNNE?th=1 ($5.99 About the product: Sterilized eliminating 99.9% of most household bacteria and germs Five sterilizer bags come to a pack and each bag is reusable up to 20 times This offers 100 uses per retail pack)

Liked by chinasmom

@katemn

@128128terry11t, Terry, it was easy to grab from my Filing Cabinet the below .. hope it helps you make your own decision. Hugs to all! Katherine

FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A

(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom…maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09

@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo’s note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT’S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

FILTERED RERIGERATOR WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.

Terry, in regards to ” distilled water for those of us who wish to rinse aerobika/nebulizer in distilled water after it soaks in sudsy regular water?” .. since I steralize my Aerobika using the below method .. I have not used distilled water .. but that is just me .. from my File Cabinet:

I can ONLY speak for myself .. I follow the cleaning method on the Aerobika website: https://www.monaghanmed.com/patients-education .. the same one that came with the Aerobika.
1. I use very warm water .. I use a 4 cup plastic measuring cup to wash the various parts .. I like the cup handle as I agitate the parts I am cleaning!

Norpro 4-Cup Plastic Measuring Cup https://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1493589199&sr=8-1&keywords=4+CUP+measure+plastic

I USE THE: The First Years Power of Steam Electric Steam Sterilizer (I remove ONE shelve & make the bottom shelf TALLER to accommodate the tall nebulizer with two other more narrow shelves) https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water.
2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap.
3. I then toss them into the large round center baby sterilizer with the drainage holes at the bottom for storage (that I have removed from the unit) until I am ready to sterilize them all at one time. (This may sound dumb but I store all this equipment in my unused bathtub since I only use my shower!)
4. When I sterilize .. I make SURE I place the AEROBICA on THE TOP SHELF!! After I do sterilize them .. I let the sterilizer cool down. Re assemble and I am good to go! I use distilled water .. I feel it is a good cautionary detail to keep the unit in good condition. If you are unsure you could confirm by calling 800) 833-9653 .. or better yet .. ask your Pulmonologist or respiratory therapist .

I called Aerobika Customer Service directly and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!!

IF you are using inhaled saline (Sodium Chloride Inhalation Solution) with your Aerobika .. I found a good price at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package. I use the same cleaning method.

From Member @jenblalock, Every few days I sterilize by putting in Dr. Browns bags (can get at Amazon) with a few ounces of distilled water and microwaving on high for 2 minutes. https://www.amazon.com/Dr-Browns-Microwave-Steam-Sterilizer/dp/B0035LQNNE?th=1 ($5.99 About the product: Sterilized eliminating 99.9% of most household bacteria and germs Five sterilizer bags come to a pack and each bag is reusable up to 20 times This offers 100 uses per retail pack)

Jump to this post

Katherine: You are so good, so kind, and so thoughtful. You are a treasure of important information and tips. That said, please make sure that you are getting the rest necessary so that your journey back to health is smooth and as short as possible. As always, thank you. Terry

@128128terry11t, we all love and miss Katherine @katemn. She is our angel. I saw you requested information about water alternatives. I belived that the refrigerated water and ice was filtered therefore it was good water but the information from the experts has opened my eyes.There is a place where water is stored in the refridgerator, our humidifiers, and hot water heaters and hottubs that is breeding ground for NTM. Also the airaters on our showerheads and on our faucets is another place they like to hang out. My water here is really bad. I have a shower head filter that only i use. For my drinking water I run my tap for a little while to get alot of water that may be sitting in my pipes overnight out. Then i run it cold only into a britta filtered pitcher, then into a pot on the stove and boil it for 10 minutes. Now it is ready for most people to drink. But my water here still looks like it has a lot of stuff in it. So i filter it again with 2 paper coffee filters into a disinfected air dried bottle with a lid and store them in the refrigerator. I use it for everthing instead of buying water. I do have a back up of distilled and spring water in case i run out. Over the memorial day weekend we had a boil order thursday through tuesday. I went to dollar tree and got bleach and water and containers to wash dishes and rinse them . I refrained from using my dishwasher and washing any clothes, or making coffee. That brought a new awareness about how contaminated things can become. If you use any filters during a boil order you have to replace all of them after the order is lifted. I still have to drain the water heater and get to the store for filters. My husband is not helpful and thinks i am just over reacting. I cant get him change the furnace filter and he does heating and cooling. Our home is so dusty and i ask him to please change the filer and he says it doesnt look dirty. I have to get the filters myself and change them without him knowing. You dont realize how lucky we are to have some cleanwater when other’s do not. Some People have to disinfect their bath water just to give their children a bath no one should have to do that. Oh sorry, I may have gotten off track a little. I hope this can help in addition to Kathrine’ s wonderful advice. I hope you have a great day and stay strong, healthy, and happy!!!
Becky

@128128terry11t, and chinasmom, Becky .. what excellent advice .. BUT I STILL LOVE this note from my File Cabinet .. I feel we MUST do all we can to avoid infection .. and reinfection .. NOT just from mycobacterium .. but as I found out .. BACTERIA in my lungs!!

BUT see below from my File Cabinet .. Hugs to all! Katherine

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo .. Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. from Katherine .. After I read Mary Jo’s note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT’S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

Liked by chinasmom

@chinasmom

@128128terry11t, we all love and miss Katherine @katemn. She is our angel. I saw you requested information about water alternatives. I belived that the refrigerated water and ice was filtered therefore it was good water but the information from the experts has opened my eyes.There is a place where water is stored in the refridgerator, our humidifiers, and hot water heaters and hottubs that is breeding ground for NTM. Also the airaters on our showerheads and on our faucets is another place they like to hang out. My water here is really bad. I have a shower head filter that only i use. For my drinking water I run my tap for a little while to get alot of water that may be sitting in my pipes overnight out. Then i run it cold only into a britta filtered pitcher, then into a pot on the stove and boil it for 10 minutes. Now it is ready for most people to drink. But my water here still looks like it has a lot of stuff in it. So i filter it again with 2 paper coffee filters into a disinfected air dried bottle with a lid and store them in the refrigerator. I use it for everthing instead of buying water. I do have a back up of distilled and spring water in case i run out. Over the memorial day weekend we had a boil order thursday through tuesday. I went to dollar tree and got bleach and water and containers to wash dishes and rinse them . I refrained from using my dishwasher and washing any clothes, or making coffee. That brought a new awareness about how contaminated things can become. If you use any filters during a boil order you have to replace all of them after the order is lifted. I still have to drain the water heater and get to the store for filters. My husband is not helpful and thinks i am just over reacting. I cant get him change the furnace filter and he does heating and cooling. Our home is so dusty and i ask him to please change the filer and he says it doesnt look dirty. I have to get the filters myself and change them without him knowing. You dont realize how lucky we are to have some cleanwater when other’s do not. Some People have to disinfect their bath water just to give their children a bath no one should have to do that. Oh sorry, I may have gotten off track a little. I hope this can help in addition to Kathrine’ s wonderful advice. I hope you have a great day and stay strong, healthy, and happy!!!
Becky

Jump to this post

I am exhausted just reading what you have to do for cleaner water. I admire your work ethic and creativity and want to wish you better health as well. Never thought about being the only one to use a shower head filter. Thank you. Terry

I have not attended any of the NTM support group meetings in NYC but have gotten the minutes. I will be moving in December and anticipate looking into the following at that time. Another way to acquire the filter which allegedly can block mycobacteria is to contact Chris Connelly Pall Life Sciences National Water Sales Manager at 866-347-3428 (chris.connolly@pall.com). Their website http://www.pall.com If anyone pursues this, please advise the rest of us. One question that I would like answered: if we put the filter on only one shower head that is only used by us, do we need to change monthly or can we change every other month (I believe that is what Katherine did)? Do we need to have a general water filter on all the water as well? Terry

@128128terry11t

I have not attended any of the NTM support group meetings in NYC but have gotten the minutes. I will be moving in December and anticipate looking into the following at that time. Another way to acquire the filter which allegedly can block mycobacteria is to contact Chris Connelly Pall Life Sciences National Water Sales Manager at 866-347-3428 (chris.connolly@pall.com). Their website http://www.pall.com If anyone pursues this, please advise the rest of us. One question that I would like answered: if we put the filter on only one shower head that is only used by us, do we need to change monthly or can we change every other month (I believe that is what Katherine did)? Do we need to have a general water filter on all the water as well? Terry

Jump to this post

Hi @128128terry11t,
I moved your most recent message to the thread about filters that you started a while back. You can read through the previous comments from Katherine’s file cabinet. Thanks for the additional information about a new filter you are researching. Please keep us posted on what you find out.

Hi, I recently purchased a Berkey water filter and just loveing it. It took me hours and hours of research to pick a filter and I’m so pleased with my choice,I came across various websites like goo.gl/b6v8YD to get the loyal reviews about the water filter and it really came out to be true.

The water is delicious and I love that the whole unit is portable so we can take it with us on trips. Thanks

@katemn

@128128terry11t, Terry, it was easy to grab from my Filing Cabinet the below .. hope it helps you make your own decision. Hugs to all! Katherine

FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A

(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom…maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09

@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo’s note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT’S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

FILTERED RERIGERATOR WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.

Terry, in regards to ” distilled water for those of us who wish to rinse aerobika/nebulizer in distilled water after it soaks in sudsy regular water?” .. since I steralize my Aerobika using the below method .. I have not used distilled water .. but that is just me .. from my File Cabinet:

I can ONLY speak for myself .. I follow the cleaning method on the Aerobika website: https://www.monaghanmed.com/patients-education .. the same one that came with the Aerobika.
1. I use very warm water .. I use a 4 cup plastic measuring cup to wash the various parts .. I like the cup handle as I agitate the parts I am cleaning!

Norpro 4-Cup Plastic Measuring Cup https://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1493589199&sr=8-1&keywords=4+CUP+measure+plastic

I USE THE: The First Years Power of Steam Electric Steam Sterilizer (I remove ONE shelve & make the bottom shelf TALLER to accommodate the tall nebulizer with two other more narrow shelves) https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water.
2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap.
3. I then toss them into the large round center baby sterilizer with the drainage holes at the bottom for storage (that I have removed from the unit) until I am ready to sterilize them all at one time. (This may sound dumb but I store all this equipment in my unused bathtub since I only use my shower!)
4. When I sterilize .. I make SURE I place the AEROBICA on THE TOP SHELF!! After I do sterilize them .. I let the sterilizer cool down. Re assemble and I am good to go! I use distilled water .. I feel it is a good cautionary detail to keep the unit in good condition. If you are unsure you could confirm by calling 800) 833-9653 .. or better yet .. ask your Pulmonologist or respiratory therapist .

I called Aerobika Customer Service directly and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!!

IF you are using inhaled saline (Sodium Chloride Inhalation Solution) with your Aerobika .. I found a good price at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package. I use the same cleaning method.

From Member @jenblalock, Every few days I sterilize by putting in Dr. Browns bags (can get at Amazon) with a few ounces of distilled water and microwaving on high for 2 minutes. https://www.amazon.com/Dr-Browns-Microwave-Steam-Sterilizer/dp/B0035LQNNE?th=1 ($5.99 About the product: Sterilized eliminating 99.9% of most household bacteria and germs Five sterilizer bags come to a pack and each bag is reusable up to 20 times This offers 100 uses per retail pack)

Jump to this post

@alessandre Here you go.

@katemn

@128128terry11t, Terry, it was easy to grab from my Filing Cabinet the below .. hope it helps you make your own decision. Hugs to all! Katherine

FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A

(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom…maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09

@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don’t think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo’s note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT’S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

FILTERED RERIGERATOR WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.

Terry, in regards to ” distilled water for those of us who wish to rinse aerobika/nebulizer in distilled water after it soaks in sudsy regular water?” .. since I steralize my Aerobika using the below method .. I have not used distilled water .. but that is just me .. from my File Cabinet:

I can ONLY speak for myself .. I follow the cleaning method on the Aerobika website: https://www.monaghanmed.com/patients-education .. the same one that came with the Aerobika.
1. I use very warm water .. I use a 4 cup plastic measuring cup to wash the various parts .. I like the cup handle as I agitate the parts I am cleaning!

Norpro 4-Cup Plastic Measuring Cup https://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1493589199&sr=8-1&keywords=4+CUP+measure+plastic

I USE THE: The First Years Power of Steam Electric Steam Sterilizer (I remove ONE shelve & make the bottom shelf TALLER to accommodate the tall nebulizer with two other more narrow shelves) https://smile.amazon.com/gp/product/B002WN2B6O/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
I use a bit of antibacterial dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water.
2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap.
3. I then toss them into the large round center baby sterilizer with the drainage holes at the bottom for storage (that I have removed from the unit) until I am ready to sterilize them all at one time. (This may sound dumb but I store all this equipment in my unused bathtub since I only use my shower!)
4. When I sterilize .. I make SURE I place the AEROBICA on THE TOP SHELF!! After I do sterilize them .. I let the sterilizer cool down. Re assemble and I am good to go! I use distilled water .. I feel it is a good cautionary detail to keep the unit in good condition. If you are unsure you could confirm by calling 800) 833-9653 .. or better yet .. ask your Pulmonologist or respiratory therapist .

I called Aerobika Customer Service directly and told them my cleaning method .. their only concern was that I rinse well the antibacterial dish soap after soaking. BUT they are NOT experts on MAC or Bronchiectasis. https://www.monaghanmed.com/patients-education. They finally admitted their ONLY cleaning research was based on boiling SO cannot comment on any cleaning method other than boiling .. baby bottle sterilizing? LIABILITY!!

IF you are using inhaled saline (Sodium Chloride Inhalation Solution) with your Aerobika .. I found a good price at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package. I use the same cleaning method.

From Member @jenblalock, Every few days I sterilize by putting in Dr. Browns bags (can get at Amazon) with a few ounces of distilled water and microwaving on high for 2 minutes. https://www.amazon.com/Dr-Browns-Microwave-Steam-Sterilizer/dp/B0035LQNNE?th=1 ($5.99 About the product: Sterilized eliminating 99.9% of most household bacteria and germs Five sterilizer bags come to a pack and each bag is reusable up to 20 times This offers 100 uses per retail pack)

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Katherine, How does the nebulized saline solution help? I know that the salt caves in Eastern Europe are alleged to have kept the miners healthy – whereas miners typically suffer from ill health – and have read that living in a (relatively) clean environment BY THE SEA is beneficial…. Re cleaning my Aerobika: I clean in warm, soapy water to cover for 5' & rinse & every other day after rinsing & shaking out excess water, pour some 70% Isopropyl alcohol on parts & let sit another 5 minutes then rinse, shake & set out to dry.

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