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

Did they say why 3 years? I was told 18 months. Did they tell you what type you have? In a way I think I am afraid to go off the meds

@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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I read that potting soil can be a problem. I think that was my source.

@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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@gardenernj Hi Kris. Nice to 'meet' you; wish it were on a gardening site or something instead of MAC. (sigh) Have you been able to navigate this site alrigjt? Please feel free to ask questions, if I don't know the answer; I can try to find it.

@jkiemen I have MAI and from looking at my CT scan, my lungs are in bad shape. If I just had scaring, my ID Dr would have recommended every other day but I need to take the Big 3 every day. From what I understand, these meds take time to work. I think 3 years sounds like such a long time but it's inspiring to read when people in this group get to come off their meds.

I do wonder about that but I hate to think that my beloved garden harmed me! My doctors think I've had this for a long time. I've traveled a lot around the world and lived in Asia too which is where I first was diagnosed with asthma. The air quality is horrible and I did drink the water. No regrets though, it was an amazing experience to work there. I have never smoked, exercise and eat healthy food. I considered myself healthy until my recent diagnosis. One of my doctors said I easily could have picked it up right here at home from the water and another said I probably picked it up overseas. I know it doesn't matter but like you, I do wonder.

@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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@marilyns It's very possible. Did you use potting soil with peat in it?

@pinktower

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.

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@pinktower Hi. What script are you referring to for brand? The saline? If so, I never asked for a specific brand. I think different pharmacies carry diff brands. Just make sure it is 7%. My insurance doesn't cover the saline. CVS charged me $50.00 yesterday, wheras Walgreen's used to charge me $35.00. I am going to check with Walmart and Sam's Club for my next batch.

@gardenernj

I do wonder about that but I hate to think that my beloved garden harmed me! My doctors think I've had this for a long time. I've traveled a lot around the world and lived in Asia too which is where I first was diagnosed with asthma. The air quality is horrible and I did drink the water. No regrets though, it was an amazing experience to work there. I have never smoked, exercise and eat healthy food. I considered myself healthy until my recent diagnosis. One of my doctors said I easily could have picked it up right here at home from the water and another said I probably picked it up overseas. I know it doesn't matter but like you, I do wonder.

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@gardenernj Hello. I have noticed that many of us with MAC have also traveled overseas, and to Asian countries. I lived in Japan for three years as a kid and returned there in 2007. I feel pretty confident that I got mine from our outdoor hot tub. I was in it every night, up to my neck, breathing in the effervescense. Hot tub is gone, and I will never get in another one.

@pinktower

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.

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@windwalker
I am referring to the actual nebulizer.
I ended up not needing to know. I took the script to Walgreens and it was denied. However, they researched and it is covered under medical, not pharmacy. They faxed the script to the proper place. I had a zero copay and the company called me and advised me it will arrive today or tomorrow. If you can, look for a Walgreens specialty pharmacy. They have information online that explains what they are. They are so helpful and they are not busy. I wouldn’t have gotten my nebulizer free at another Walgreens. I would have just been told
It wasn’t covered and I would have paid for it. The same May be true with the saline. I will let you know if it goes through.

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