1. < MAC & Bronchiectasis

Travel advice

Posted by Toni D. @tcd518, Jun 2, 2023

Hello, all. I am going on a two-week trip with no access to a kitchen or such and am bringing along my bronchiectasis, MAC, and restrictive ventilatory defect (I never leave home without them). Currently, I nebulize twice a day with levalbuterol 0.31 mg followed by 7% sodium chloride with my Aerobika hooked up to the nebulizer and am doing okay. I bought a travel-size Pari Trek S nebulizer and a collapsible bowl for washing the Aerobika and neb parts but don't know how I can sanitize them. At home, they go in the dishwasher every two-three days on the "sanitize" cycle. Do you think a soak in vinegar would do the trick? Any other ideas?

I'm also bringing along decongestant pills, a box of 12-hour Mucinex, and a large bottle of Delsym, just in case. Any other recommendations?

Thank you all so much for your help!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

pacathy | @pacathy | Feb 9 6:23am
In reply to @sueinmn "Cathy - When I travel I use an aerosol product called Simply Saline to irrigate my..." + (show)
@sueinmn

Cathy - When I travel I use an aerosol product called Simply Saline to irrigate my sinuses. No boiling water, toting stuff, etc. One "canister" costs about $5 and lasts me 2 days. Too pricy for everyday, but it's a great solution for me for travel.
Like @scoop suggests, maybe try it at home?
Sue

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I add a medication to the saline twice daily. I’m glad to know these work though.

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scoop | @scoop | Feb 9 9:25am
In reply to @pacathy "Thanks, Scoop for the info. I think I’ll try the pot. Btw, I checked REI for..." + (show)
@pacathy

Thanks, Scoop for the info. I think I’ll try the pot.
Btw, I checked REI for purifiers. MSR’s is fast now and includes viruses, but is about 380 (and might build biofilm?). Cheaper ones are filters.

I’m still debating signing up. With the frequent moving, I’ll need a faster morning routine. As you said, this is a PITA.

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@pacathy I'm stumped by your comment: "Btw, I checked REI for purifiers. MSR’s is fast now and includes viruses, but is about 380 (and might build biofilm?). Cheaper ones are filters."

Maybe it's related to an earlier comment I made?

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pacathy | @pacathy | Feb 9 5:57pm

I’m sorry to confuse you. I’d read your info from contacting Life Straw, a company that makes water filters. It made me wonder if REI (a very reputable outdoor company) carried better and faster purifiers these days. Paddlers and back paddlers have used filters or purifiers to get clean water for a while, but they were a bit tedious to use. They carry the one from MSR (reputable brand) that’s quick now, but pricy. For a long trip, it might be worth it. I was just sharing that.

I just looked at the REI site again tonight and noticed a Grayl bottle that is a purifier (filters viruses too).. It’s just 99 and it’s fast. I’m going to do some research, but it might work to get clean enough water to rinse sinuses. I hope that makes sense.

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annagh | @annagh | Feb 10 11:09am

I carry a Steripen Ultra in my purse, purchased at REI for $129.00. In restaurants I stir it in the water (no ice) and when traveling use it to sterilize a liter at a time. Very convenient and easy.

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1 reply
scoop | @scoop | Feb 10 11:13am
In reply to @annagh "I carry a Steripen Ultra in my purse, purchased at REI for $129.00. In restaurants I..." + (show)
@annagh

I carry a Steripen Ultra in my purse, purchased at REI for $129.00. In restaurants I stir it in the water (no ice) and when traveling use it to sterilize a liter at a time. Very convenient and easy.

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@annagh Have you used the Steripen water for rinsing sinuses?

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1 reply
annagh | @annagh | Feb 10 11:48am
In reply to @scoop "@annagh Have you used the Steripen water for rinsing sinuses?" + (show)
@scoop

@annagh Have you used the Steripen water for rinsing sinuses?

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No, I don't rinse my sinuses, so I have not, but my understanding was the Dr. Falkingham tested and concluded that using the Steripen did result in sterile water. I don't have time now, but I'll see if I can check my source on that.

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1 reply
annagh | @annagh | Feb 10 1:37pm
In reply to @annagh "No, I don't rinse my sinuses, so I have not, but my understanding was the Dr...." + (show)
@annagh

No, I don't rinse my sinuses, so I have not, but my understanding was the Dr. Falkingham tested and concluded that using the Steripen did result in sterile water. I don't have time now, but I'll see if I can check my source on that.

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I found these postings by Dr. Falkinham on the Global Form connect.ntminfo.org website.

Posted 05-02-2023 12:10
The SteriPen was tested at National Jewish by Jenn Honda, one of the great, young mycobacteriologists. She and her students showed it killed NTM. I don't know about the different models and will assume they all have the same ultraviolet light dosage, so will kill NTM.
Joe Falkinham

November 28, 2022
Dear NTM Global Forum Members and Readers:
I have just reviewed the data from my lab reporting the killing of Mycobacterium avium and Mycobacterium abscessus in the ultraviolet light bottles made by Crazy Cap. First, the method and second the results.
Method
1. Crazy Cap I and Crazy Cap Pro bottles were filled with Blacksburg tap water and their UV-cycle run following the manufacturer's directions to sterilize the water.
2. After the sterilization, the Crazy Cap I bottle was inoculated with lots of cells of a strain of Mycobacterium abscessus and the Crazy Cap Pro bottle inoculated with lots of cells of a strain of Mycobacterium abscessus.
3. Samples were collected from the two bottles and the total number of viable cells before UV-irradiation measured.
4. The sterilization cycles for the two bottles were initiated following the manufacturer's directions.
5. After completion of the bottles' UV disinfection cycles, the contents were again sampled for mycobacterial cells.
6. Samples of the UV-irradiated and inoculated water were collected from the bottles and exposed to visible light for 30 minute to determine whether the cells could be revived by photoreactivation. Visible light can reverse UV-killing as it triggers an enzyme in mycobacterial cells that repairs the damage to DNA due to UV.
Results
1. The Crazy Cap I bottle killed 99.9985 % of M. abscessus cells and the Crazy Cap Pro bottle killed 99.993 % of M. avium cells.
2. We did not observe any photoreactivation of UV-irradiated cells.
Conclusion
The Crazy Cap bottles are capable of substantial killing (greater than 4-logs) of Mycobacterium spp. and there is no worry that leaving the UV-irradiated cells in visible light will restore viability to the UV-irradiated cells. There is no need to keep the UV-irradiated water in the dark.

He also posted this paper in the library:

Shared files

SteriPEN Testing Paper (SteriPEN-Testing-Paper.pdf)

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1 reply
cwal | @cwal | Feb 11 3:57pm
In reply to @annagh "I found these postings by Dr. Falkinham on the Global Form connect.ntminfo.org website. Posted 05-02-2023 12:10..." + (show)
@annagh

I found these postings by Dr. Falkinham on the Global Form connect.ntminfo.org website.

Posted 05-02-2023 12:10
The SteriPen was tested at National Jewish by Jenn Honda, one of the great, young mycobacteriologists. She and her students showed it killed NTM. I don't know about the different models and will assume they all have the same ultraviolet light dosage, so will kill NTM.
Joe Falkinham

November 28, 2022
Dear NTM Global Forum Members and Readers:
I have just reviewed the data from my lab reporting the killing of Mycobacterium avium and Mycobacterium abscessus in the ultraviolet light bottles made by Crazy Cap. First, the method and second the results.
Method
1. Crazy Cap I and Crazy Cap Pro bottles were filled with Blacksburg tap water and their UV-cycle run following the manufacturer's directions to sterilize the water.
2. After the sterilization, the Crazy Cap I bottle was inoculated with lots of cells of a strain of Mycobacterium abscessus and the Crazy Cap Pro bottle inoculated with lots of cells of a strain of Mycobacterium abscessus.
3. Samples were collected from the two bottles and the total number of viable cells before UV-irradiation measured.
4. The sterilization cycles for the two bottles were initiated following the manufacturer's directions.
5. After completion of the bottles' UV disinfection cycles, the contents were again sampled for mycobacterial cells.
6. Samples of the UV-irradiated and inoculated water were collected from the bottles and exposed to visible light for 30 minute to determine whether the cells could be revived by photoreactivation. Visible light can reverse UV-killing as it triggers an enzyme in mycobacterial cells that repairs the damage to DNA due to UV.
Results
1. The Crazy Cap I bottle killed 99.9985 % of M. abscessus cells and the Crazy Cap Pro bottle killed 99.993 % of M. avium cells.
2. We did not observe any photoreactivation of UV-irradiated cells.
Conclusion
The Crazy Cap bottles are capable of substantial killing (greater than 4-logs) of Mycobacterium spp. and there is no worry that leaving the UV-irradiated cells in visible light will restore viability to the UV-irradiated cells. There is no need to keep the UV-irradiated water in the dark.

He also posted this paper in the library:

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I searched the website (and I may not be looking in the right place or just didn't word my search correctly) but I was unable to find these postings that you refer to. Could you possibly provide a link or point me to the right place to find this?

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1 reply
annagh | @annagh | Feb 11 4:48pm
In reply to @cwal "I searched the website (and I may not be looking in the right place or just..." + (show)
@cwal

I searched the website (and I may not be looking in the right place or just didn't word my search correctly) but I was unable to find these postings that you refer to. Could you possibly provide a link or point me to the right place to find this?

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Searching the website and coming up with the same thing is a bit of a challenge! I originally searched "Steripen Falkingham" to find those items. When I tried that again just now, the Paper was again near the top of the list, and when I tried "Steripen Jenn Honda" I was able to retrieve Dr. Falkingham's comment from 05-02-2023 in a thread titled, "SterPen" started on 04-29-2023 12:13.
Searching "Crazy Cap Falkingham" brought up his post from November 2022, titled "Crazy Cap and Crazy Cap Pro Ultraviolet Bottles."
That's as much help as I can offer. Perhaps you have to be a member to access these posts. In any case, I assure that I copied and pasted exactly what was posted.
All best,
Anna

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