I was told to move out of State or expect to be on Oxygen

Hi and welcome to this wonderful support site. I hope you'll receive more opinions/advice in addition to mine as the group is filled with experience and good ideas.

It sounds like the ID doctor scared the bejeezus out of you. Regarding the ID doctor, is this someone who works with the BE/NTM population in particular? There are around 33+ BE NTM sites around the US. It's important to seek care from one of those sites as they work with the latest treatment guidelines. Pulmonologists on this list usually have ID doctors to whom they refer. In other words, ID doctors who treat NTM day in and out. It's possible your ID doc is not that familiar with the latest in treating NTM thus the scare tactics as he might not know better? Link below.
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center
NTM is everywhere. There are a number of ways you can co-exist with NTM in the environment (including water). I'm attaching information which address how to co-exist or reduce your exposure to NTM in the environment. It can be done! It takes some getting used to but it is manageable.

https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf (a little dated but still contains good info)

@scoop Thank you very much !! I have checked and found a Doctor ( not the one I saw) from the link you forwarded and I will contact his office today. I will also check into the other 2 links you sent me this morning. Very much appreciated. Hilary

@hilarys26 Well for sure you were jolted with the statements from your doctor. If nothing else, to start with, due to my experience...most important while you gather your thoughts after learning about the diagnosis....I would consider starting the nebulizing and all the air way clearance methods that are available to be viewed and seen on the internet. That would be a good start while you read through some of the threads here on this site and are able to fully comprehend everything. It can be overwhelming at first but with time, reflection and doing what one needs to do it will all come together.
I was told to start the antibiotics due to having a low load of MAI but with doing all I mentioned above I still feel well, good appetite, sleep well, and not fatigued. I am 83 diagnosed in 2022.
The important thing now is to figure out and find the best and most knowledgeable pulmonologist....The threads on this Mayo will help you with that. You might read the thread labeled 'Should I keep my NJH appointment?.
Barbara

Well I’ve lived in NC my entire life and have a condo on the Outer Banks. My entire family lives here, and I will never move away. I also go to the FL keys every winter and spend a lot of time boating in both NC and FL. No doctor has ever advised me to move away or stop going to FL. (Not that I would.) I would definitely get more opinions on this from BE EXPERTS, then make your decision based what they say, and most importantly your feelings on what things you can emotionally deal with regarding all of it. You can’t totally avoid NTM’s since they’re everywhere, so these are highly personal decisions.

@blm1007blm1007 Thank you Barbara for your advice . It really helps and I will certainly look into everything you mentioned . Much appreciated. Hilary

PS: I’m 66

It would be shocking to hear that information from an ID doctor. I have BE, not NTM, however I’m curious as to where the ID specialist had gathered that information. From research or observations from other ID specialists? The information has come from somewhere and likely not just anecdotal from his practice.

It leaves you wondering about the quality of an area’s water supply but how could three states be identified in this manner?

If some locations put people who have BE more at risk, you’d hope pulmonologists and ID doctors would let patients know. Would people who have more evidence of Bronchiectasis throughout their lungs or more mucus be more at risk?

We’ve heard about Florida and Hawaii and other areas that are a concern for MAC, but wasn’t soil composition the issue?

NTM is everywhere and that’s why we use airway clearance techniques. I’d still like to hear from some other specialists on that observation. Are there areas of more NTM disease in every country? Good luck with your pulmonologist @hilarys26

@blm1007blm1007 how long after BE diagnosis were you diagnosed with MAC? Curious , do you have any other lung conditions , ex asthma , COPD…?

@cholash
Diagnosed Aug. 2022 with BE via PCP ordering a C Scan.
MAC/MAI October 2023 via NJH testing of sputum in the lab and Bronchoscope. I allowed a Bronchoscope.
No Acid Reflux per testing at NJH.
No Asthma or a COPD diagnosis now or ever before.
Barbara

Hi Hilary,
I lived in SC for nine years and loved it there. We moved back north only because of my illness and family who wanted us to live closer to them. I am also 69 and exercise everyday. I was diagnosed three years ago with both too. Water is an issue for us no matter where we live due to the mycobacteria avium complex in it. I boil my drinking water or use a Lifestraw water picture and water bottle. I also boil distilled water to use for my saline nasal rinses as distilled water can also carry the bacteria. If you live in the Charleston area, UMSC has bronchiestesis and MAC specialists. If not, be sure you go to a pulmonologist and ID doctors who know the disease well. It’s also important your other doctors know especially when you have changes or other diagnosis with your health (ie acid reflux is an issue). There are a lot of resources for us to utilize. Ive attended many seminars. Scoop, above reply, provided an excellent source where you can learn a lot. You can look there to see if there is a local support group. I would not move but I would make all the necessary changes in my life (boiling water, airway clearance etc.). Keep exercising as it’s a great airway clearance. I hope all goes well for you.