Why is boiling drinking water essential in MAC?

Can you recommend any online exercises for swallowing?

What a great question! I was at NJH and one day I had a barium test where I ate graham crackers dipped in barium goo and quite a few drinks of barium liquid. While I was swallowing, they took their x-rays. What they are looking for is if the epiglottis was open or close while swallowing. The epiglottis is a flap of cartilage that prevents food or water from entering the trachea during swallowing. The flap is to open during breathing and closed during swallowing. In my case, there was very minimal seepage at the muscles that connect flap. They gave me swallowing exercises that I was to do for 6-8 weeks to strengthen the muscles, which I did. My case was minor, so I didn't need much as for exercises. Also, I don't boil my drinking water. I installed an ultrafiltration system that filters anything above .01 microns. I have to change out the 4 cannisters every 9-12 months. I also drink bottled Icelandic Glacier mineral water, which supposedly doesn't contain mycobacterium-not sure if that's true. There's also the chance of aspirating food or drink by breathing and drinking at the same time, hence it "goes down the wrong way".

Could you please describe the ultrafiltration system and canisters? Where are they installed, and what is the brand name? For example, is the first system installed in the garage, and then you have additional filters in the home faucet(s)?

As to changing the canisters, do you pay a plumber to do this? How often do you change the .1 micron filter(s)?

I am just also thinking about the quantity of water needed to rinse vegetables and fruits and to wash dishes. When people have these faucet filters in the kitchen and have hard water, it does not seem that the filters would last long.

What a great question! I was at NJH and one day I had a barium test where I ate graham crackers dipped in barium goo and quite a few drinks of barium liquid. While I was swallowing, they took their x-rays. What they are looking for is if the epiglottis was open or close while swallowing. The epiglottis is a flap of cartilage that prevents food or water from entering the trachea during swallowing. The flap is to open during breathing and closed during swallowing. In my case, there was very minimal seepage at the muscles that connect flap. They gave me swallowing exercises that I was to do for 6-8 weeks to strengthen the muscles, which I did. My case was minor, so I didn't need much as for exercises. Also, I don't boil my drinking water. I installed an ultrafiltration system that filters anything above .01 microns. I have to change out the 4 cannisters every 9-12 months. I also drink bottled Icelandic Glacier mineral water, which supposedly doesn't contain mycobacterium-not sure if that's true. There's also the chance of aspirating food or drink by breathing and drinking at the same time, hence it "goes down the wrong way".

Anyone else able to comment on if MAC is in Icelandic Glacier mineral water posted by kathyjjb , I'd like to know please. Also, Is it in glass or plastic bottle please

Yes, it's called the "Raintree Undersink UF Water System", installed under the sink-not a whole house water system in the garage. The cost is $189. Their web site is: wholehousewatercooler.com. UF filter filters to 0.01 micron. I had a plumber install, but the filters, I will most likely change myself. I have hard water and so far so good, but I haven't had it for years and years. I use the UF filter tap, for washing fruits and vegetables, cooking, and drinking.
I also purchased a "Showerclear" shower head. You may want to google that. Hot water vapor from showers (or anywhere) is also a potential source for MAC.

@kathyjjb , I cannot thank you enough!!!

We also have very hard water. I cannot even use it to boil equipment because it leaves such a residue on even the pots.

We have been ordering 5 gallon bottles of spring water. We order five per month for one time delivery. We do not use a stand, but we place it in the corner and have been boiling a large pot at a time. I use it for drinking.

Then we have the Lifestraw pitchers, which I have been using for rinsing fruits and vegetables. I usually use tap water for cooking because the temperature and time will kill the MAC. If I am unsure, I use the Lifestraw water.

It all gets expensive. I did not want to do the PALL filters because they are expensive and will not last long with our hard water. I did not want to deal with a multi stage, cumbersome primary filter, probably in the garage.

This ultrafiltration filter under the sink is a great idea. So, it has a separate place on the faucet set-up for attaching the UF filter tap, right?

Is there a way to judge when the filter needs changing? People use the filter for different amounts of filtering. The hard water might also reduce the amount of time for the filter effectiveness. I use the Lifestraw for rinsing the fruits and veggies, and it takes a lot, especially for greens. I use the filters for only half the time that they say they will last, so it adds up.

Are you free of MAC (if you don’t mind- don’t need to respond to that)? I ask because I cleared it and do not want to repeat meds.

Thank you also for the Showerclear recommendation. I have read others mention it. It does not produce as a fine a mist, but more like droplets, correct? This is the one that you can open up (flaps)? Do you find that it produces less steam? Does it need to be periodically removed and soaked in bleach?

I have resigned my self to baths over showers, but it sure be nice to shower!

I don't boil my spring water, it has little to no mycobacterium-at least according to what I've read on the internet, I usually but the Icelandic Glacial. Also, I don't get water into my lungs when I drink. When I was tested at NJH, I was told I only had minor seepage around the muscle that connects to the epiglottis flap but only when I guzzled water, no seepage when taking normal sips. They gave me exercises to strengthen those muscles. Have you had the barium tests while swallowing? That may alleviate your concerns or help you address the problem, if you have one. All part of prevention.
I was diagnosed with M. Abscesses last year. NJH doctor has suggested "watchful wait".
I take cool showers as a precaution. The holes are larger, so not as much mist as other shower heads. I think the biggest advantage is that you can open the shower head, so that water drains. Molds and bacteria grow in shower heads due to the water that collects and stays in the head. I spoke with the developer, and he told me that he designed it for his mother who had MAC and other lung conditions. You might want to give him a call; his number should be on the website.
As for the UF filter: First-sorry, I got the website wrong in earlier post, it's: wholesalewatercooler.com. Or, just google "Raintree Undersink UF Water System. If you go to the website, there should be a picture of the faucet. I hired a plumber to install. When the UF filter reaches the end of it's life, you will see the water flow will reduce substantially. This is due to the filter clogging. Also, the customer service person that I spoke with is extremely knowledgeable and goes above and beyond to assist.
Good luck! Sounds like you are diligent.

Thank you so much again. I did have the barium swallow test as well as an upper endoscopy, and they saw no sign of issues. However, it is my understanding that, after a certain age, most of us microaspirate dozens of times daily without even realizing it. This is why I take precautions, including using a wedge pillow with another on top of it to keep me from sliding down when I sleep.

Yes, it may be overkill on boiling the spring water, but I just do it in a large pot, let it cool, and store it in two large containers in the fridge. The under sink filter sounds much more practical! I will definitely check it out, and it is good to know that they also have great customer support.

I am sorry that you have been diagnosed with abscessus, but with your routine and diligence, as well as with watching it, I believe that you will do all that is necessary to overcome it.

Thank you again so much for the very helpful information.

Yes, it's called the "Raintree Undersink UF Water System", installed under the sink-not a whole house water system in the garage. The cost is $189. Their web site is: wholehousewatercooler.com. UF filter filters to 0.01 micron. I had a plumber install, but the filters, I will most likely change myself. I have hard water and so far so good, but I haven't had it for years and years. I use the UF filter tap, for washing fruits and vegetables, cooking, and drinking.
I also purchased a "Showerclear" shower head. You may want to google that. Hot water vapor from showers (or anywhere) is also a potential source for MAC.