Hi Norma,

There is also a lot of NTM found along the West coast, and there are many clusters throughout the country. The fact is, because it's an environmental pathogen, it's impossible to avoid it geographically, and the specific strain depends in part on location - different areas have different concentrations of different strains. There has been some basic research on this that is just now being presented.

The link that Delia posted above will provide helpful tips to help avoid exposure.

Hi Norma,

Welcome to the community! Thanks for sharing your experience. I hope that other community members will share their experiences as well. As I understand it, NTMs are commonly found in the environment, but there are things you can do to lessen exposure and prevent infections. Below is a link to a page on NTM Info & Research's website which explains some measures to help reduce exposure to NTM.

http://www.ntminfo.org/faq/other-questions/prevention

Hope this helps!

-Delia

@Delia thanks, I printed out the insight info not only for myself but for family members. This is something else that needs to be addressed as many people may hear you cough or know you have something but do not want to acknowledge the scope of your illness. The ever popular expression "You don't look sick" can really hurt.....Thanks for letting me vent - Norma

@bunnyhop NTM Info also distributes copies of the Insight pamphlet - for free. Here's more info: http://www.ntminfo.org/patients/insight-patient-brochure

Hi Norma! Welcome to this most resourceful and supportive of communities! I hope you find what you are looking for-we are happy you found it!

@bunnyhop Great! The Insight brochure is definitely a valuable resource! Have you checked out the blog post linked below? I think it would be of interest to you.

https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/14/Key-points-from-NYU-NTM-Patient-Education-Seminar-QOL-Segment-presented-by-Bets

Best,
Delia

@Delia I am watching the seminars - great info - thank you for the link - norma

@Gretchen - Thanks

Hi Bunnyhop,

I know you asked this question long ago, but others probably have the same question. I was first diagnosed in 2012. At that time, doctors were big on the geographic issues with NTM. They kept telling me humid locations, like coastal areas: Florida, California, and Hawaii were hotbeds of NTM. I lived in Hawaii at the time I was diagnosed. So, to get away from the threat, I moved to Nevada, the dryest place in the entire country.... and proceeded to catch another NTM. But not just any NTM, this is a little known strain called Simiae, harder to treat than most any other. I spent two years on drugs and did not fully clear it. Doctors told me "Simiae is rampant in the desert Southwest". Now I am about to get treated for it again! I have come to the conclusion that I am going to get NTM no matter where I am at. My advice is no not move specifically to avoid NTM, but do reasonable things to minimize your risk of getting it.

John,

I agree! Preventative measures are of upmost importance. Some patients get recurring infections, regardless of the location.

My pulmonologist said "High and Dry" is theoretically best for all the reasons noted above, but also said that he doesn't specifically advise persons to turn their lives upside down b/c of all the stories of persons changing EVERYTHING to decrease risk, then end up getting another strain anyway. Very frustrating. I asked about the high prevalence of NTM in Arizona which seemed puzzling since it's so dry. He said a patient moved there for the dry air, but moved away after a year b/c she hated having to dust her house so often. Good for her b/c turns out that the dust/dirt blowing around is a source of NTM. Also, "you can't live in Arizona without living around water". He said that the misters used outside of restaurants etc to keep people cool are a terrible source of NTM. I asked my pulmonologist about the Pacific Northwest since my husband's family is from there -- he said it was better for NTM, but way worse for mold. And finally, the High and Dry City of Denver is not coincidentally a "relatively" safer place to live -- there used to be many tuberculosis sanitoriums there b/c people found out that TB doesn't thrive in that climate, much like NTM. I'm happily living in Northwest Arkansas, but can't get rid of the MAC for which I've taken Azith/Rif/Etham x 10 months -- just started Arikayce 3 weeks ago and about to add the vest twice daily.

KatP,

Hello! Unfortunately, there is no perfect place to avoid NTM , other respiratory issues such as mold. I did a lot of research when I was first diagnosed years ago- the docs said the same thing as you recently heard. Additionally, uprooting and less social support can add additional stressors for some patients.
I hope that the arikayce begins to assist you in the very near future. I understand how frustrating, stressful this experience can be. Try to stay positive somehow despite the current challenges. We are here to support you on the journey. Katie