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

@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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@windwalker When I applied for disability I had to wait until I was no longer working. If still working, she will be denied because she can still work. Just an FYI.

@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.

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Another Wisconsin Resident on board. I would be interested in knowing if we are in certain regions. I see South Carolina and the east coast and Wisconsin. Do we have some West Coast? I understand that Oregon is high also

@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.

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@jkiemen , The hot-spot regions for mac are: Arizona, California, Hawaii, Florida, New Hampshire, and Wisconsin. These states have the highest incidence of reported mac infections.

@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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@jenblalock , Good point, I forgot to include that tidbit. Thank you for catching that.

Liked by Jen_b

@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.

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and in Wisconsin, we have allot of people that spend half the year in Arizona and Florida
Also I am wondering about the larger area in Wisconsin were this is being detected. South East Wisconsin seems to be a big area but there are also many larger medical centers in that area. So is the diagnosis the key and other area underdiagnosed or is it just the area.

Liked by Jen_b, ling123

@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.

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Good question. People living in rural areas or small towns could easily be under or misdiagnosed. Or simply never even seek medical treatment due to lack of insurance coverage or access to major medical centers.

@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.

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@jkiemen, South East Wisconsin seems to be a hotbed for mac. I know that some of the counties there are supplied by water that is open reservoirs; which means that lots of natural organisms live there in it.

@128128terry11t

@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

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@loveblue, It sounds like you are doing a good job of cleaning.

I thought that this article would be helpful for learning that the greatest potential for contracting mac is most likely from our water. https://pubs.acs.org/doi/abs/10.1021/acs.est.5b00496

@windwalker

I thought that this article would be helpful for learning that the greatest potential for contracting mac is most likely from our water. https://pubs.acs.org/doi/abs/10.1021/acs.est.5b00496

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@windwalker, Thank you for posting the article. I am new to this forum and am finding it incredibly helpful. I was just recently diagnosed with Bronchietasis and MAC and have so many questions. When brushing my teeth, should I be using sterilized water?

@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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Hang in there, you are in the right place. I am getting much help from this group and I’m encouraged.:)

@gardenernj Hello, and welcome to Connect. Do you have a first name that I can address you by? I am very glad that you are finding this site helpful. I am sorry about your diagnosis. Myself and others are here to help you navigate your way through it. About brushing teeth with sterilized water….. I do not do it, but others on this site might. I probably would if I had a high colony count and multiple kinds of bacteria infecting me. It would also depend on what KIND of MAC I had. If I had M. Abscessus or MAI, then I might consider sterilizing. I have Avium Mycobacterium, it is a slow grower & I am on monthly doses of alternating antibiotics for life. I am not on the BIG 3, I do 10 days every other month on one that is totally tolerable, and then 28 days on Tobramycin for pseudomonas. Do you want to tell me more about what is going on with you?

I saw my infectious disease doctors and my pulmonary doctor at Mayo yesterday. My colony count is down from 14 to 5. I am on the big three, and my pulmonologist seemed to think it will help to add a nebulizer. He gave me the prescription for that and the saline and for combivent. I do not know if my insurance will pay for this or not. Before I check, how did others go about filling the script, and what brand do you recommend. Thank you.

@windwalker

@gardenernj Hello, and welcome to Connect. Do you have a first name that I can address you by? I am very glad that you are finding this site helpful. I am sorry about your diagnosis. Myself and others are here to help you navigate your way through it. About brushing teeth with sterilized water….. I do not do it, but others on this site might. I probably would if I had a high colony count and multiple kinds of bacteria infecting me. It would also depend on what KIND of MAC I had. If I had M. Abscessus or MAI, then I might consider sterilizing. I have Avium Mycobacterium, it is a slow grower & I am on monthly doses of alternating antibiotics for life. I am not on the BIG 3, I do 10 days every other month on one that is totally tolerable, and then 28 days on Tobramycin for pseudomonas. Do you want to tell me more about what is going on with you?

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@windwalker My name is Kris, thanks for your reply. I am just wrapping my head around being diagnosed with this disease. There is so much to learn plus it is very abrupt to change my entire routine. I started on the Big 3 last week and am looking at 3 years on the meds so I am definitely new to this all. I'm certainly glad to have found this group.

@windwalker

@gardenernj Hello, and welcome to Connect. Do you have a first name that I can address you by? I am very glad that you are finding this site helpful. I am sorry about your diagnosis. Myself and others are here to help you navigate your way through it. About brushing teeth with sterilized water….. I do not do it, but others on this site might. I probably would if I had a high colony count and multiple kinds of bacteria infecting me. It would also depend on what KIND of MAC I had. If I had M. Abscessus or MAI, then I might consider sterilizing. I have Avium Mycobacterium, it is a slow grower & I am on monthly doses of alternating antibiotics for life. I am not on the BIG 3, I do 10 days every other month on one that is totally tolerable, and then 28 days on Tobramycin for pseudomonas. Do you want to tell me more about what is going on with you?

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Kris…..by your posting it sounds like you are a gardener…do you think you picked upMAC in the garden? I too have MAc and believe that’s where I got mine.

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