Hello! I realize that this is a very anxiety producing point. There are over 140 questions on this site for you to review to give you a better understanding of what other patients deal with- you are not alone.

Treatment varies from individual to individual; some can tolerate the meds, some cannot. You must be your own advocate and report to your doctor how the drugs make you feel on a regular basis.

Below is a link regarding household and prevention measures:https://www.ntminfo.org/reducing-exposure/

We are here for you on your journey. Katie

Glad you have found this community, Tracer. I hope you will find support and answers here!

ive been reading a massive amount of case studies and it seems very evident that the shower is the biggest culprit. if you have ntm, there is a very good chance its in your water supply. there is a strong connection between the exact pathogens found in peoples bathrooms as the ones that are found in their lungs. it can be in the water or the ntm that is coming thru the pipes can create biofilm in the actual pipes, or in the shower head, or other places where it is the end of a water supply, like a faucet. ntm prefers to be in steam because its more active than water, so when you start your shower the ntm is freely active in the steam from the shower and can get deep into your respiratory system. in a practical sense it would be advantageous to abandon showers altogether, as well as sprayers on the sink and stuff like that. turning the heat up on the water heater will lessen the chance that ntm will develop, as there are far less cases of ntm in hotter water. 130 or higher is best. but i dont think temperature would eliminate ntm, especially if you have biofilm in your pipes

based on the fact that biofilm can be present in pipes and seems almost impossible to remove, im unsure whether or not replacing an entire plumbing system would be the right move or not. especially if finances were not a problem. moving into a new place might be a solution also. one tip ive read says to empty and refill the water heater every two weeks - based on the fact that ntm takes two weeks or so to develop, but i have to research this more. you would think there would be a way to filter it out at the point of entry into the home... one thing im fairly certain about, though, is that most infections are coming from the shower. they had a case study in japan that showed ntm was only found in the bathrooms of homes where patients had ntm, which would indicate that the source of infection was always coming from the bathrooms in these cases.

i think the most practical application for preventing ntm would be to lay down as many layers of defense, which would be done with obtaining the best filtration systems on teh home and changing the water with regularity (every two weeks), while at the same time completly abandoning showering. they say to get a shower head that has a better stream, but why mess with the actual source of most of these infections? if ntm is coming from the shower, most likely, then why shower in the first place? seems illogical

as far as drinking water, i have a berkey and i bought it because it was widely reviewed as one of the best filters on the market. with that being said, i cant verify whether or not mycobacteria is filtered through the water. so if anyone has info on this id appreciate it.

as far as gardening, i would say dont do it..

the more i read about ntm the more i think theres a way to eradicate it from any home. it seems like people put up some forms of defense but don't take every preventative measure possible. if a person wanted to take a radical approach, they could abandon the piping system in a home entirely and make the problem farrrr easier. if you can find a water filter that GUARANTEES clearing out ntm, you could just run all the water you use in the home through it. tons and tons of off grid homes have showers and stuff that are operated without piping systems. anyone could rig a home with the same overall idea and circumvent the entire problem. honestly, it seems far easier to go that route and focus on minimization. if ntm can't be fully eradicated from the actual plumbing system, maybe its best to abandon the plumbing system

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

One other question......I have a "tankless" water heater. Is that any safer?

https://www.huffpost.com/entry/shower-sickness-showerhead-mold_n_58867477e4b0e3a7356b38d2

Found this what do u think?

From what I have learned in my NTM support group and from watching the yearly NTM conference from Denver online, water filters do not filter out NTM, and in fact NTM can colonate on the filter itself. For that reason if you choose to use a filtration system, you need to change the filter at least every 3 weeks. Other bad sources of NTM are on the water filters and ice makers inside refrigerators. We stopped using our filtration system with the expensive filter you change only once a year, and we went back to using ice cube trays.

As for the shower head, I participated in the Showerhead Micobacteria Sudy a few years ago where you sent in samples from swabbing inside your Showerhead and faucets. The results showed that compared to others, our shower was very low in MAC, despite the fact that my wife and I both have MAC lung disease. MAC is everywhere. We just have to be reasonable in choosing how to keep safe without making ourselves crazy over it.

This whole disease is sooo frustrating. Different doctors recommend different things so it is hard to know what to do. I beat MAC after 10 years! I try to be careful but evidently not careful enough, because now I have M. massiliense. Same type of treatment which is a big yuck but what can I do? I will definitely try to be more proactive. I drink only Spring water but do not have any filters on my water supply. I cannot bear the thought of giving up my showers but I may have to. I have not been given much info about the water situation but I will definitely start investigating.

Good luck on your journey. You can do it because you have to! Protecting our lungs must come first.

Bmblebee,

Hello! Yes, it is a very frustrating, challenging disorder. I had my first reoccurrence after a couple of years and had to restart the big 3 once again. MAC grew out positive on the culture several other time but I was not symptomatic, hence did not need the meds. We must take all necessary precautions and hold onto HOPE that things will get better. My lungs have been behaving and they must continue to do so. We are here for you. Kati

Well, it seems that my Abscessus is not showing positive BUT I now am positive for MAC again. So frustrating! I have had so many problems with medicines in the past and now the doctor does not know what to start me on. I worry my lungs are being destroyed while he waits. Too frustrating!!

Susan Bee,

Hello! Yes, I agree with you that this disorder is extremely frustrating. The re- infection is very high, nearly 50% get reinfected within a few years. I was reinfected twice- just when I thought I was getting things back on track....

I assume that your doctor is consulting with others to decide what meds to place you on?

We are here for you. Try to take one day, one hour at a time. A few more days will not make a huge difference in your lungs unless you are experiencing major difficulty breathing. I know that you will seek care if your breathing does become labored.

Try to envision yourself feeling better and getting to the other side of this. Please keep us posted. Katie

This article explains a study of different filters to remove NTM's from water. It seems that the LifeStraw system works well. This filter is available for pitchers, water bottles and some portable devices.

https://www.frontiersin.org/articles/10.3389/fpubh...

Hello! I use the lifestraw water bottle. Pall filters are recommended for shower heads. Have you read about water studies, done by Dr J Falkinham/ Virginia Tech?

https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR

Sal,

Spring water is recommended over distilled or purified water.

Below is a link on reducing exposure re: household items: https://ntminfo.org/reducing-exposure/