Your precautions: boiling water; keeping or tossing my potted plants?

Thanks for the advice and information. It is a very confusing condition as you say, and not enough research is being done. From what I’m reading, far too few doctors or physicians recognize the symptoms and don’t order CT scans and other tests early on, even when a patient asks. Perhaps physician ego is part of the problem or lack of curiosity. Too many patients? Who knows?
I’ve read about the international Bronchiectasis Conference happening in 2024 in Scotland. It would be good to see more funding for research in future years.
Thanks for the info! @sueinmn

When it comes to rare diseases, I don't think we can blame our providers, " far too few doctors or physicians recognize the symptoms and don’t order CT scans and other tests early on..."

Only 1-2 people out of every thousand in this country has bronchiectasis, and many of those are silent or undiagnosed, so the typical provider seldom sees a case. Even my first pulmonologist, in practice for over 25 years, said he only sees a handful of cases a year, and even fewer cases of MAC. My current pulmonologist oversees a large practice in a metro area and with my ID doc, sees roughly 25 cases a year.

Also, since neither MAC nor Bronchiectasis is contagious, is typically not fatal, and mainly affects older women, it is never going to be a draw for research dollars - we just need to keep prodding, and doing our own bit to donate to the organizations where research is ongoing.

And here on Mayo Connect, this support group will keep supporting one another, answering questions and providing links to emerging research and treatments. We are already light years ahead of where we were even 5 years ago in knowledge, emerging medications, and strategies (like 7% saline nebs) for managing our health.

Sue

I love to work in the yard and do often. I admit that I don’t wear a mask most of those times. We also have a lot of indoor plants that I take care of. I guess I don’t think to wear a mask then. My pulmonologist has not suggested that I do. We do have a whole house water filter system and our shower does have a shower head that has a filter. I still take showers because my knees don’t work all that well, and getting out of the tub is very difficult. You can take the shower head off once a week and soak it in disinfectant. My MAC was diagnosed about 9 years ago. I took a number of antibiotics for 9 months, but they weren’t making much difference. I have not taken any meds for MAC since. I cough at times, but otherwise, I think I am doing pretty well. Good luck to all.

Hi @sueinmn, I have an excellent specialist and I’m always grateful. Symptoms being dismissed by a family doctor for a lengthy period of time is incredibly disappointing, but it happens.
Yes, there is more research now from what I can see online. Thanks for moderating this forum.

Instead of boiling I use a lifestraw pitcher to filter spring water. Research shows spring water has less MAC and the 0.2 micron filters in a lifestraw pitcher will filter out Mac and other bacteria. It's easier than boiling for me.

Hi Nancy, good luck with your treatment. I've had MAC three times at five year intervals, with and without cavities, and recovered fully each time. I resumed a fully normal illness-free lifestyle in between each infection as I have been led to understand that it's impossible to prevent exposure to mycobacteria unless you live in a bubble. The only exception to that was I would don a mask when driving through a construction site or when the wind picked up dust (in the desert).

In addition to what you wrote about staying well, I would reiterate living and enjoying life as much as possible. Regarding drinking water, I use an undercabinet, reverse osmosis filtration system and bottled. I think RO systems are the best regarding removal of all types of contaminants. I shower mostly and don't use a filter. I never wore a mask in nature to prevent MAC, I do now in crowded spaces to prevent Covid.

Regarding other questions pjas972j, I have houseplants, I don't wear a mask while cleaning, don't know if the big 3 are considered old school. After I was first diagnosed, I declined treatment in favor of alternative therapies (there weren't any really, I just didn't want to take three antibiotics per day for two years. I thought it was nuts!). I only had a little hacky cough at the time. I changed my tune six months later when I was admitted with community-acquired pneumonia secondary to MAC with a cavity. Then I cut myself a lot of slack and rested, in bed, I don't remember how long. So my recommendation is take good care of how you feel, physically and emotionally, checking in multiple times a day, "how am I doing now? what do I need to do now? what would I like to do now? what's possible right now?" I wish you both the smoothest recovery. Roisin

Hi Sue,

Could you share with me the research groups that you would consider donating to? This is the time of the year to do so. The rationale behind each of your tips is exceptional!
I am no longer in the dark and learned so many new strategies to make life with BE/MAC manageable. Even my doctors have commented how well informed I am with BE/MAC!

Many thanks to you, Sue and Mayo Clinic Connect

I'm sorry, Frankie, I have my own curated list of organizations to whom I donate, and have not researched any others, so I would not feel comfortable making a recommendation.

Maybe someone else has a suggestion for you?
Sue

I know there is good research being done for MAC on phage therapy; don't know if they accept donations.
In the midst of a changing world, we continue to be human-centered, wanting OUR health problems solved (understandable!) Regardless of my health, I believe coming to terms with the other-than-human
dilemnas we have caused to other species must take precendence; I give everything I can to cat and dog shelters, support informing the public about how ignoring the ancient ways of respecting and understanding all species has brought us to our knees now. Consider supporting the spread of indigenous knowledge, read and give books, join a group, study, read David Abrams and so many others. It will change you, and you will know what to do and where to put money and prayers and effort and love.