1. < MAC & Bronchiectasis

Are Nebulized saline and Aerobika beneficial?

Posted by lmh7 @lmh7, Feb 28, 2019

I have MAC and a modest case of bronchiectasis. I rarely, if ever, cough yet was started on the nebulized 3% saline and Aerobika 3 months ago at my request, hoping to be able to produce sputum for periodic testing to see if the antibiotics are working. I have not yet coughed up anything. I'm wondering if it's beneficial to continue with this practice anyway? Or is the Aerobika aerating my lungs to dislodge the MAC so the antibiotics can work better, even if I'm not producing sputum?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 3, 2019
In reply to @auntnanny "@windwalker888 Terri, I'm coming on to ask you a question about the toby. I've done three..." + (show)
@auntnanny

@windwalker888 Terri, I'm coming on to ask you a question about the toby. I've done three of the four weeks now and my breathing is not good. I never experienced much trouble with it before toby but I'm only able to do short breaths now...… is this a side effect of the med? Coughing is no better and lots of phlegm. I've done only three weeks. I also had sinus surgery at Mayo's and have been doing rinses with Levaquin because pseudomonas showed in the sinus cultures also. Do you have any advice? Thanks much -- Jan

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Hi @auntnanny, it looks like the wrong person got tagged in your message. I'm tagging @windwalker to make sure she sees your question and concern about having trouble breathing with toby, and your other questions. Terri, your thoughts?

AuntNanny, in the meantime, you might want to post your questions to this discussion:
- Tobramycin https://connect.mayoclinic.org/discussion/tobramycin/

REPLY
yayaaz | @yayaaz | Mar 4, 2019
In reply to @elainet "I sterilize my equipment 1X a week. Wash in soapy water, let soak 15 minutes. Rinse...." + (show)
@elainet

I sterilize my equipment 1X a week. Wash in soapy water, let soak 15 minutes. Rinse. Sterilize in 4:1 ratio of purified water (I just boil mine) and white vinegar. I let the equipment soak for 20 minutes. Rinse in purified water. Let air dry. After every time I use my tubing, I detach any equipment, and let it run for 3-5 minutes to dry it out. And hang it up in airy place to continue drying. Tubing should be replaced every 3 months.

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@yayaaz Thank you very much for this information.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 2019
In reply to @auntnanny "@windwalker888 Terri, I'm coming on to ask you a question about the toby. I've done three..." + (show)
@auntnanny

@windwalker888 Terri, I'm coming on to ask you a question about the toby. I've done three of the four weeks now and my breathing is not good. I never experienced much trouble with it before toby but I'm only able to do short breaths now...… is this a side effect of the med? Coughing is no better and lots of phlegm. I've done only three weeks. I also had sinus surgery at Mayo's and have been doing rinses with Levaquin because pseudomonas showed in the sinus cultures also. Do you have any advice? Thanks much -- Jan

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@auntnanny Hi Jan. I am on the Toby right now. It makes me more congested than usual, but I think it is due to it breaking up steadfast crud deep down in my lungs. I find that I feel fine, no cough, no phlegm before toby treatments, then during toby, I get a little gunky, but then, at the end of 28 days on it; I am clear. Kind of like 'it's always darkest before dawn'. You know what I am saying? That is how it works for me anyway. We all react differently to meds, etc. Toby acts differently for me from month to month. For example, this month, it doesn't seem to be making my lungs feel as wet as it had in other months. And I am not getting the phlegm that it can sometimes cause. All I know is: I have had negative cultures 2016 against pseudomonas, and clear of mac since 2014. This regimen is working for me, so I am staying with it as my dr suggested. If your breathing is really bad, you should call your dr and find out if you should discontinue the toby.

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auntnanny | @auntnanny | Mar 7, 2019

windwalker -- thanks for the response. I did email Mayo's today about the shortness of breath and they still want me to stay on it so..... hoping I don't fall over before I get through. Don't feel well on it but it's the first session. They are going to add an oral antibiotic now. We'll see...… thanks again

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 2019

@auntnanny I have been more short of breath in the last few months myself. I am hoping it passes.

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