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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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@boomerexpert

Thanks T, good info! These videos cover info we can't find on the web?

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Replies to "Thanks T, good info! These videos cover info we can't find on the web?"

Boomerexpert....cannot answer your question re what else is out on web...and how do they compare to the NJ videos from 2015 from their workshop....have not even finished all of theirs much less look for others..am also wondering if there will be more updated items from this year's workshop which will be ...the NJ lady said...posted in a few weeks. TerriD

Hi folks...writing this the day after attending workshop for patients with NTM at National Jewish in Denver. They will be posting all the videos in a few weeks...a must see... Does not duplicate the materials in videos from last years...2015 . So best to watch both years.
Some random tid bits..
A patient who shows no signs of NTM after treatment is called "in remission"

I sat at lunch with two spiffy looking ladies who both had lobes removed several years ago not on MDs now...and exercise several times a day...and also do pulmonary therapy so as to be sure no mucus can settle in lungs and be a home for NTM

Dr Joseph Falkinham PH.D. A microbiologist whose whole career has been studying NTM....said there are now 171 species as of July 2016....last years lecture said 150....said to insist knowing exact species you have not just generic MAC or MAI...look at his video to hear all reservoirs NTM found in....ex. Water from refrigerator...as well as ice
Reviewed in detail info on shower heads HVAC air.much much more...invited all to email him with questions at
Jofiii@vt.edu
I asked him after lecture what do health department sanitation workers check for at YMCA. ( or any other) pools....he said certainly not NTM....but e.coli( from poop..my addition) and the Ph. Of the chemical used to be bactericidal) I suspect that is where I acquired my NTM...there is a warm pool and hot tub both of which I used for over 16 years.
Said that his university Virginia Tech as part of their agenda has the goal of making NTM disease reportable.tdrell

Thanks for the very comprehensive review, T! I've gotten a whole-house filter at the 0.2 micron level as recommended by Nat'l Jewish for removal of MAC from system... not terribly costly - approx $500 including install, but I find well worth it to ensure I will not be constantly re-infecting myself...