Have you had your water tested?

Hi Terri thanks for the info, very interesting, great that they showed a interest in Mac, getting the word out is fantastic.

@windwalker What wonderful news! We need more of that right now. I too have evidence of pink slime in my Minnesota home, and have always assumed it was therefore safe. Glad to hear your testing seems to confirm the theory, but I'll continue to be sensible.
Sue

As a newly diagnosed MAC patient, I have learned so much from all of you! After reading this post, my husband did some investigation. He found a Special Pathogens Laboratory in Pittsburgh and spent some time in conversation with them. Even though we have well water which typically does not have avium, we are going to have our water tested to find out. This lab tests for all NTM, not just avium. It will cost approximately $200 and will take 7-8 weeks for results. The lab sent us the testing kit complete with return packaging. For inquiries the address is 1401 Forbes AV Suite 401, Pittsburg, PA 15219 and the phone number is 412-281-5335. He also communicated with Dr. Joseph Falkinham from VA Tech who was mentioned in another post. He is out of the office now, but said he would get back to us with the names of other labs who might test for this. Another question I have is how many exposures to avium does it take to become sick? So much to learn.....Nancy

@n4seth That is a very good question Nancy. Avium is everywhere. Most people have it but are not infected with it. It’s kind of like if your skin were swabbed it would most likely have staph on it. But you are not infected with it. MAC is like that. I think the key is to not keep reinfecting ourselves from the source where we got it: e.g. shower heads, potting soil, hot tubs, household dust etc.. For some reason (genetic, body type, lifestyle etc.) we on this forum have a susceptibility to it. Terri (mentor) has been doing her own research on water testing and similarity in career choices of members on this site. I remember being asked by doctors if I had been around birds or lived on a farm. (No, I had not.) I used to be a tad obsessed with trying to figure out where I got it. Now my obsession is in doing what my ID doctor and pulmonologist recommend to get rid of this unwelcome lung inhabitant. So to answer your question, I don’t believe the number of exposures predispose a person to get MAC. However, I think because of our susceptibility, it is of utmost importance to not continually reinfect ourselves after diagnosis and being put on the Big3. There are many things we can do to hopefully not reinfect ourselves. These are discussed in previous posts and have provided me with tons of new knowledge. irene5

This might be a stupid question, but what do we do if our houses tests positive?

@tinaesims MAC/MAI is not like radon which home radon mit systems for air and water can eliminate. Certain types of whole house water systems have been discussed here, but short of living in a bubble, MAC will be everywhere. Not using ice water/cubes from the fridge, boiling water first, avoiding a hot tub, cleaning your shower head with vinegar or switching to baths, and/or wearing a mask while doing house or yard work are at home measures you can employ to “protect” yourself. MAC is an opportunist pathogen. Twelve people lived in my home ( ten children (what were we thinking) , my husband and myself.) I am the only MAC person! irene5

I live in a high rise in Chicago. Years ago , when I read about flesh eating bacteria destroying a teenager's limbs when she jumped into a warm water spring in , I think, Georgia, I looked up our water filtration plant and what it filters our of the water. I was using tap water in a neti pot at the time. Because our water is taken from far out in cold water Lake Michigan, I had hoped that it would not have many bacteria. Alas, flesh eating bacteria COULD survive in the cold waters and the filters would not remove them. No more tap water in a neti pot for me!

I assume that there is MAC and other bacteria in my tap water and I don't feel a need to prove that it is there. For many years, I have showered at my gym and there isn't much I can do about the water there, which is the same as the water that comes into my condo. I probably will get a water proof mask to wear in the shower there when they reopen and the masks are available again.. Since being forced to shower at home due to the virus closing gyms, I have soaked my shower head in the stronger, cleaning vinegar for several hours a couple of times. I'm not worried about most likely drinking MAC in my tap water. Stomach acid will kill almost everything.

I don't believe in boiling drinking water, so I don't know what else to do and I refuse to worry about it. Irene's report about so many using the same water but only one person, her, getting MAC is so important. It's not what's in the water; it's the state of our lungs.

Just to be clear, no one should ever use tap water in their neti pots. Distilled water only!

Thank you for this! I use a net pot 1-2x per day and am learning so many things at once, haven't even thought about it! I did ask my ID if avium ever shows up in the sinuses.....any thoughts on that?

n4seth: Many MAC patients have chronic sinus issues, and although rare MAC has been found in a few patient’s sinuses. Most times it has to do with using household water for nasal irrigation or after sinus surgery. irene5