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NTM/MAC/MAI: We must advocate for ourselves

MAC & Bronchiectasis | Last Active: Sep 17, 2022 | Replies (145)

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@kaystrand

Boomer this is just great and I want to help. I have questions!

1- Who should I be sending letters to? I live in Minnesota.
2- I'm not close to as good a writer as you, so do you think if I take the first part of what you wrote above, and added that I am one of those infected with MAC and sick from antibiotics that would be good? Or do you have another suggested letter somewhere?
3- Anything anyone has heard of going on in Minneapolis, MN re NTMs like there are in Cleveland and other places?
4- How DO you think we get the media involved?
5- How DO we make this disease reportable? Does it have to be human to human contagious?

Many Thanks!
Kay Strand

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Replies to "Boomer this is just great and I want to help. I have questions! 1- Who should..."

Hey guys hope everyone is doing alright. I have been racking my brain and im so confused trying to buying a shower filter wand. I have mac and asked my pulmonary dr about filtering water and he said its unnecessary. But my resarch says i need o-
Please help?
Becky

Since the bacteria hang out in the pipes, filtering after the fact won't help...I gotten a whole house 0.2 micron filter that gets'em out at the source... will take a while for the clean water to flush out my pipes, but over a few months I believe I'll be bacteria free! My cost was around $500 for filters/casing and installation (I have a small house; 1500 sf) - filters are expensive and must be changed every 6 months...Those who can afford to do this, I hope you will.

Boomer, I like you .. wanted to be proactive and do anything I could think of in terms of home water filtration. Since we downsized to a condo I was not thinking about whole house filtration but went for 0.2 micron filtration system at my sinks. Frankly I was quite proud of myself and at my November appointment with Dr. Timothy Aksamit at Mayo Clinic I showed him the detailed info on my carefully installed sink filtration system that included a photo as well as specs.

Sorry to say, despite all my research on the subject .. with his much better medical/scientific knowledge .. he took one look at it and in a nice tone of voice essentially told me I had wasted my time and money. WHY? Because of BIOFILM .. no matter how well I filtered the water in the system biofilm (including mycobacterium) was going to end up forming inside the faucet itself and being expelled through the faucet. ANY faucet will end up with biofilm .. a breeding ground for mycobacterium .. even the fancy one I had purchased! I was pretty sad .. but at least this wonderfully filtered water really tastes good!
https://www.ncbi.nlm.nih.gov/pubmed/16611229
@chinasmom, hope this helps you also. Good luck! Katherine

Katherine
I'm confused on all the filter stuff. We don't get MAC from drinking water, but from breathing it in right? Water vapor, as in the shower couod be a source.
So if it is going to our stomach, and we do not have reflux, should we even worry about it?
Thanks
Kay S

Kay,
I've responded at:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182
Hope you don't mind .. I wanted to share this information on that Forum also and found I could not share it on both .. attempt DENIED! Katherine

I know and recall you mentioning his thoughts before. That's why I filter the water at the source, not after it's gone through the pipes...I've found no research on this approach (that it does or doesn't work) so deferring to common sense that after a while the bacteria-free water will stop that proliferation and perhaps even...eventually...cleanse the biofilm of any left-over.

Boomer, the question above is "above my pay grade" as I am not a scientist nor an expert. Thus I have emailed Dr. Aksamit who speaks internationally on MAC/MAI if Biofilm can develop on faucet where ONLY 0.2 filtered water has passed through. That was what my sink filtration system was also .. but perhaps he and I had a misunderstanding that needs to be clarified. He travels internationally to speak but he usually gets back to me within a couple of weeks. You, as I do, want to make sure of any information we give out to our Forum members is totally accurate. Katherine

Thanks for forwarding the question to the Doc, K. I too am always careful to separate opinion from fact. My research skills are relatively well developed and have found none on this particular issue as I mentioned. So much no known....sigh....

I have a question. Is it better to take a bath then, rather than shower to avoid breathing in misted vapor from faucet/shower head?