1. < MAC & Bronchiectasis
Mentor

What is your Top Question about MAC and Bronchiectasis?

Posted by Sue, Volunteer Mentor @sueinmn, Mar 13 8:51am

Earlier this month, a "newish" member, @sisterpulse , posed a list of questions she has as a person recently diagnosed with MAC.

I promised to share the list, but then I thought maybe many of us have that one question we would really like answered, or at least for someone to point us in the direction of the latest treatment protocols or research.

I am hoping those of you who like to do a little research, including @pacathy , @scoop , @windwalker , @becleartoday and @rstel7272 will join me in finding the best answers.

See sisterpulse's questions in the next post.

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

cwal | @cwal | Mar 19 7:25am
In reply to @scoop "One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other..." + (show)
@scoop

One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other that will shorten the time it takes to clear the lungs? I need some shortcuts! Presently, I estimate almost 2 hours/day are spent attending to "maintenance" of my airways. This time includes setting up, nebbing, breathing exercises, huff coughs, clean up and sterilization. And the time spent here - lol.

And a followup to my question - can cardio exercise take some of the place of airway clearance?

Not sure my question helps @sisterpulse or @sueinmn !

Jump to this post

Yes, the time involved with all this is a drag. Any "shortcut" causes a little nag in the back of your mind about whether you should do that or not. The only shortcut I feel safe about so far is using daily use of a baby bottle sterilizer for steam sterilization and then drying after washing all the equipment. To me, boiling on top of the stove daily was just an added drag.

REPLY
muon | @muon | Mar 19 5:40pm
In reply to @scoop "One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other..." + (show)
@scoop

One of my most nagging and practical questions about bronchiectasis, will there ever be any regime/drug/other that will shorten the time it takes to clear the lungs? I need some shortcuts! Presently, I estimate almost 2 hours/day are spent attending to "maintenance" of my airways. This time includes setting up, nebbing, breathing exercises, huff coughs, clean up and sterilization. And the time spent here - lol.

And a followup to my question - can cardio exercise take some of the place of airway clearance?

Not sure my question helps @sisterpulse or @sueinmn !

Jump to this post

I do the same as you. I also walk 3-4 miles several times a week, play pickleball and use my elliptical for 2 miles daily. Usually exhausted at end of day. My pulmonologist says just keep moving and that is what I try to do.

REPLY
sisterpulse | @sisterpulse | Mar 21 1:04pm
In reply to @sueinmn "Let me see if I can address at least one of your concerns today. You said,..." + (show)
@sueinmn

Let me see if I can address at least one of your concerns today. You said, "It is likely that my shower head is probably the main source of NTM and / I live near the coast. The use of regular bleach by soaking the shower head has not been proven and here in the UK labs cannot test for NTM."

According to the National Institutes of Health, a 30 minute vinegar soak will effectively eliminate NTM< (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940030/)
"Effective and economical mycobactericidal disinfectants are needed to kill both Mycobacterium tuberculosis and non-M. tuberculosis mycobacteria. We found that acetic acid (vinegar) efficiently kills M. tuberculosis after 30 min of exposure to a 6% acetic acid solution. The activity is not due to pH alone, and propionic acid also appears to be bactericidal. M. bolletii and M. massiliense nontuberculous mycobacteria were more resistant, although a 30-min exposure to 10% acetic acid resulted in at least a 6-log10 reduction of viable bacteria. Acetic acid (vinegar) is an effective mycobactericidal disinfectant that should also be active against most other bacteria. These findings are consistent with and extend the results of studies performed in the early and mid-20th century on the disinfectant capacity of organic acids."

Some members tie a plastic bag of vinegar over their showerhead every month or two and let the head soak for 30 minutes or longer. Others remove the head and soak it. The purpose is to disrupt the biofilm where the bacteria congregate, which takes some time to grow, so more frequent treatment is not required.
Further, some water experts recommend running the hot tap for a minute or two before stepping into the shower to "flush out" any bacteria congregating in the pipe.

I hope this answers one of your concerns.
Whe else can help our colleague with answers?
Sue

Jump to this post

Thank you Sue for the simple ‘cleaning shower head process’ it may help reduce any Mac re-infection?
At the moment the pseudomonas has reoccurred and I am having IV antibiotics via Hosp @ Home and colymycin via the nebuliser.
The NTM MAC 1 has had to take a ‘back seat’ for the moment.
The annual European Lung Foundation ( ELF ) patient conference on Bronchiectasis will be on Saturday 23 March 10.00 -16.00 ( Central European Time ) speakers on treatment, research etc
Best wishes and thanks for all your information for my new Be and Mac journey.
Sr P.

REPLY
alicescearcy | @alicescearcy | Mar 26 1:05pm

Is the life straw water bottle recommended to filter out mycobacteria avium complex? If not what do you recommend?

REPLY
formergardener | @formergardener | Mar 27 9:23am

The Lifestraw company also makes pitchers in two sizes. They have 2 different filters. They are .2 micron. They are recommended, and changing the filters is easy. I would use the Lifestraw brand, not similar substitute filters.

REPLY
View MoreView Less
Please sign in or register to post a reply.