New to group... hello!

@woot Regarding aerobic exercise... I've always been active and thankfully, am still able to be. My main activities are riding my bike and walking. I'm totally committed to getting out there because it makes me feel good, mentally and physically! I live in Arizona where the weather cooperates with being outside year round. Yes, begin slowly, and then you get addicted. 🙂

@thumperguy LOL!

@aerogirl Hi there! Welcome to our mac group. I see you live in Arizona. I used to live in Tucson as well as another member in our group. How long have you lived there? I am glad to see you are getting exercise; it is key to improving your health as you know. After being diagnosed w/mac in 2011, have you ever had a negative sputem test since then?

@windwalker We've been in Tucson for 30 years now. Interesting that you used to live here! I have not had a negative sputum since being diagnosed, although the count decreased during treatment quite a bit. I have had a variety of organisms culture out, kind of a mystery, and results change from test to test. "Simiae" is my most recent (& most concerning), and doc following closely to see what happens with next culture. I'm fortunate in that I feel good and really have only minor symptoms. Thanks for reaching out - I am learning a ton, and I already thought I knew a lot!

@aerogirl, I stayed sick for most of the yrs I lived in Tucson. Don't know if you are aware or not, but it is one of the 'hotbeds' for mac. Meaning a higher incidence than some other places. I was dianosed with mac while living in Tucson in 2005, along with Valley Fever. I moved to coastal S.C. in 2012 and started treatment at the Mayo in Jacksonville. I finally regained my health and tested neg for mac since 2014.

Interesting! No, I didn't know Tucson is a MAC hotbed. Is there a theory as to why? Wondering if Phoenix has a high rate as well. Did you test negative without the terrible 3?? Glad you have regained your health!!

They are still studying as to why some areas tend to be hotbeds for mac. I have a feeling it has to do with the municipal water source. I had the water company test my water at my home here in Bluffton and it was negative for mac. I have not had mac since I moved here in 2012. The water here does have another bacteria in it that is not usually harmful to health that does not let mac live. I have the name written down somewhere. I know we had a discussion about that on this site. Will see if I can find it for you. Yes, I tested negative without the Big 3. Click on my photo icon and read how my Mayo doc treated it.

Dear Connect Members, @aerogirl

Remember the poll I started about who has the ‘pink slime’ AKA Methylobacterium in their bathrooms? I have been in contact with Joseph Falkinham, a NTM reseacher and professor at Virginia Tech. He is very interested in starting a data base for where this particular bacterium is located throughout the U.S. and Canada. I have noted the locales from those of you who have already responded. Am encouraging any others with the pinkish/orange bacteria to report it back here to me. I don’t know about you, but I am excited to be a part of important research.
Please include your state and county name when submitting. Thank you in advance for helping with this poll. See e-mail below from Dr. Falkinham – Terri M.

“Dear Terri:

The source of mycobacteria in homes and buildings is the municipal water from a utility. It enters the treatment plant from the source water, usually adhering to soil particulates. The mycobacteria are disinfectant-resistant and are the few survivors of disinfection (e.g., chlorine) and have no competitors that have been killed off.

When that water reaches our homes, the mycobacteria grow in the water heaters and then are circulated throughout the house. We are currently finishing up work showing the impact of the water heater on mycobacterial numbers. Thus, the critical control point for mycobacteria might be the water heater.

I would certainly appreaciate knowing where the “Connect” group has found pink slime. You have given me an idea….I can use the NTM Foundation data base to get an idea of pink slime across the US and Canada.

Best,
Joe”

What a unique story you have! I love that you had success with a different treatment entirely. I'm wondering if you just got lucky, or if others have had success with that treatment? Anything you can share on these topics is much appreciated, and I will also search the site for prior discussions as well. I'm actually sending away a home water sample for testing - decided I needed to do that when my doc suggested I might want to boil all of my water. Uggg! In the meantime, we purchase treated, bulk water for drinking, and I suppose that needs to be tested too. Joining this group and talking with people like yourself has certainly gotten my wheels turning - thanks!

aerogirl, You can scroll to the top of this thread and go click on the magnifying glass icon; type in 'pink slime' and you will see all kinds of comments about that and mac in plumbing pipes. That kind of search works for other topics too.