I live in Milwaukee . at first my doctor thought I had gotten Bronchiectasis in Arizona while on vacation. But I think I got it in an office where I worked in downtown Milwaukee.

@Margo I have since learned that Milwaukee has an elevated risk for NTM. Something to do with our big old puddle to the East do you think? :)

hi rachel - thanks for responding - i am thinking about heading to north west texas, but it is so hard to leave the security blanket of my doctors and family, but i feel like i am putting my life on the line staying in an area with known high rates of ntm - any info from ntm'ers will surely help with my thoughts of a better place to be - norma

so many ways to look at this. we already have it and, if we live in high incidence areas, we have doctors who are familiar with it. on the other hand, can we improve our situation by moving to a different area (which seems to be away from water)? I have dealt with ibs for many years and am now working to improve that. as other have said, our guts are our immune system and I, for one, truly believe that.
to address the question, I was diagnosed in Oregon from a ct done during one of my chemos. my doc at ohsu seems to think I still wouldn't be aware that I have mac/bronchiectasis without that ct (no symptoms). so how many more of us are there out there?!

I suspect there are many, many more of us out there with silent NTM, or symptoms that are being missed.

bunnyhop, there is something called Valley Fever that is endemic in the Southwest. Look up a map of the incidence area. You could be trading one bug for another.

hi lindalee
yes i have a map printed out with all the mycosis and one with ntm - this leaves a very small part of the us that may be free of these bugs, but heaven only knows what else is out there waiting - lol - i had my checkup with my id doctor this week and "i am free of ntm mai at this time, yeah!!! that i must say was a long 2 years of illness and treatments - my id dr reminded me and stressed the importance of lung clearance - in oct. i had pneumonia and nov. bronchitis - i am looking forward to a no ills dec. - did most of my christmas shopping on line to avoid the masses - back to the subject i am still wanting to move but oh it is such a hard decision, i live in one of the worst places for ntm's but have access to a very good group of doctors within minutes from my home - so many decisions to make......thanks for listening to my ramble - norma

OK - a safe place - I got it! Northern North Dakota

What wonderful news that you are doing so much better! Have a great Christmas.

@bunnyhop Norma! Congrats on reaching NTM-free status! Enjoy your antibiotic-free holidays! :)

thanks merry

@LindaLee
thanks LindaLee

Hi Clevegrrl! I keep thinking back 2 years when I spent two days hanging out in an indoor water park with friends. Can't help but wonder if that was my ground zero for exposure, or if it's just my shower head. Like you, I try to be a little more careful.

How are you 'more careful'? I guess what I'm asking is- now that we have it, what are we more careful of-- More of 'it' or the secondary, oportunistic crap like pneumonia, etc. Does everyone get vaccines?

@kate Hi Kate,
I definitely stay away from indoor water parks and hot tubs. I also avoid grocery produce sections that have sprayers to mist the veggies. I should probably stop using my kitchen sprayer and clean the shower hear regularly too. Not that any of that is guaranteed to stop, or even significantly reduce exposure to NTM, but it can't hurt. Even though while on the antibiotics I suppose it's not as important as when I (hopefully) reach the point of being NTM-free.

And, yes, I definitely try to avoid the opportunistic crap! :) Flu shot. Avoid sick people. Don't touch germy door handles and wash, wash, wash my hands. But that's more about preventing my COPD exacerbations, than avoiding NTM.

@kate Hi Kate and everyone reading this....... Things I have done to keep this nightmare at bay (not sure it really helps but I do it anyway) -
some things took a bit of time like convincing my husband to turn the water heater to 130, replacing our shower head with an all metal one, replacing the carbon filter in the kitchen water filter every 30 days - keeping the window open in the shower and the fan running and the door opened, also, which may seem gross to some, but now i do what my family has called bird baths daily and shower every 3 or 4 days - my life has been as a gardener and that has been very hard for me to give up - so we have removed many of my garden plots and when I do rarely go out to piddle it is with a mask and gloves, which is pretty hard here in hot florida - I learned in the beginning of this illness that ntm is abundant in peat moss which I amended my soil with every year and I think that may be where I aquired ntm am but than again I recently found out that living with a bird may have been the cause (the bird has found a new home) or as the Id Dr first told me "if you have ever chocked while singing in the shower, you got it" - What ever the cause it has drasticly changed how I go through life - I stay at home as much as possible to avoid catching what ever is lurking in the outside world, and am excepting that this is my new life - its hard and some days I have a "Pitty poor me party" but than I think, For this day I am free of ntm and that is a wonderful reason to get up each day - I hope everyones journey with this and any chronic disease ends sooner than later and that in leaning to cope we find strength we never new we had - Merry Christmas and Blessings to all

Norma

Hi - so sorry to hear that you now have had to become one of us - i also had ntm mai - have had bronchiectasis diagnosed since 2005 - i am now free of ntm mai after 16 months of treatment -during that time i also had to be treated for pseudomonas with a picc line for 1 month (iv antibiotic) - and from all my research and all my long talks with my 3 drs the ntm will most likely come back or i will be reinfected but for now i am enjoying this time of no ntm.......do you have symptoms , low grade fevers, sweats, flu like symptoms etc if so i cannot imagine not being treated just because it might come back - by the time i found the correct group of drs. and my husband ask what would happen if i do not get treatment the answer from my pumo dr was " she will die and it will not be a pleasant death" not to scare you, i did have very severe symptoms by than.....so if you are not showing signs i have heard from others that many drs.do not treat until than - the bronchiectasis part is just a never ending challenge to keep your lungs as clear as possible so as not to have a breeding ground for every germ inhaled - i do saline nebulizer each day, and a lot of chest clapping and hanging at different angles over a big exercise ball or off the bed which is quite a challenge at 65 years - lol - anyway i hope you are without symptoms at this time. God bless you in this journey and Merry Christmas to you and all........Norma