What is your Top Question about MAC and Bronchiectasis?

@sisterpulse would like to know:
I am new to it all and trying to find my own pathway through the conferences on You tube and Mayo online which has been so informative.
I am avoiding the big 3 ( have 2 small nodules ) apart from fatigue I feel ok.
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. And ‘ boiling ‘ the AC Devices in the microwave may also be problematic.
Here in the UK we have been advised to reduce the hot water temps to reduce electricity and gas use and global warming.
My question is why subject my old body with horrible lasting side effects from the big 3 unless the PLD is life threatening as the NTM different strains are likely to re colonise the lungs and I’m reluctant to give up hot showers or indulge in cold water washing!
As the number of Be NTM cases are increasing there is an opportunity for engineers/plumbers and lab technicians to work together on viable cost effective solutions.
It worked for legionella but NTM is more difficult to identify and eradicate in the domestic water systems.
Thank you for reading and I look forward to reading your views.

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

I personally believe we cannot control our environment other than minimizing digging in dirt, staying of hot tubs, etc. I more concerned with catching various infections from crowded spaces. As far as the big 3, I did 28 and 12 month stints with no unmanageable consequences, keep a close check on your eyes and hearing.
I do however have a terrible reaction to Amikacin IV and Arikayce inhaled which I have ear nerve damage that effects my balance even after 5 years (I am now age 65). PT keeps me mobile and active

I’m happy to help with research Sue, I think you did a good job answering the shower question.

My question is: what is a reasonable approach for people with MILD bronchiectasis? Do I need to be as careful as most of you?

Sue- Household white vinegar does not state the percentage of acetic acid on the label. Do you know? and would the household variety work? I searched online and found that 10% acetic acid is something that would have to be ordered from a company online.

I have been suffering with pain in the right shoulder blade area for over 2 months. The MAC disease is in my right lung. The pain feels like someone pinching me really tight and it comes and goes. Both my Pulmo and ID Dr's don't think it's coming from MAC. I had a mole removed in that same area back in mid January and I think it might be nerve damage from the needle she put in. Does anyone else suffer from pain with MAC. I have no cough and very little mucus. Thanks so much.

Household vinegar (also known as canning or cleaning vinegar) +where I shop is labelled 5% or 6%. The home improvement stores like Home Depot also carry highly concentrated vinegar, usually 30% - which I dilute to 6% for home use - 4 parts water to one part vinegar.
Sue

I, too, have mild bronchiectasis. I told my doctor that often people ask me why I need to do Airway Clearance since I’ve never had MAC. My doctor answered that I do it to help prevent getting MAC.

I’d like to know if I’m destined to get MAC one day anyway even if I
do what I need to do. Are there people around who have BE and never get MAC?

Because we have Bronchiectasis it is highly likely that we will get some kind of bug that will worsen our condition sooner or later. There are bacteria, fungi, etc everywhere normally in our environment and our own bodies. People with normal lungs, immune systems etc will not usually have problems. We cannot clear these due to our damaged lungs and the varying amounts of mucous that is always there. These bugs etc love to live and multiply in that and there you go. Airway clearance is greatly helpful in keeping the mucous down and the risk of growing something.

There is more than just MAC we are susceptible to