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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda
Replies to "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..."
Teresa, I think that unless chlorine is very diluted, that it is
just not good for anybody.
Latest out of NJ indicates the following: soaking shower head in chlorine for 30 minutes kills NTM bacteria but no indication for how long and how often to repeat (sigh...); newest guidelines for water heater temp now back to 120-125 as research has shown higher temps create heat resistant bacteria (sigh #2...).
Frustrating but better than nothin!
@boomerexpert, please watch the recording of the NTM conference last week at Georgetown Univ when it becomes available online. There was SO much information that I couldn't keep up with everything, my notes are quite incomplete and I wouldn't want to give the wrong information. But a few things mentioned there
1) chlorine and it's limited ability to kill all the NTM infection and thus leaving the remaining bacteria stronger.
2) the temp of hot water, which I think one doctor who spoke recommended above 120 degrees. My husband spoke with the doctor after the conference because we have a tankless water heater.
3) that the doctors at this conference do not all agree on treatment or prevention of this disease! (a BIG sigh from me)
There is simply too little research being conducted on this growing epidemic...and I believe that dearth of attention will continue until someone in Congress or a celebrity get it and go public. Big sigh...
PLEASE PLEASE PLEASE PLEASE.....take me off your discussion email list. I have tried everything to block the emails...divert them etc. and they still fill up my inbox daily. I DO NOT WANT TO READ ABOUT THIS.
Ruth Van Dyne
@ruhbesb. I think you have to unsubscribe. You should contact Mayo Clinic Connect on how to do it.
@ruhdesb; at the bottom any email you receive, click unsubscribe, go to the tab 'account settings', click edit, you will find unsubscribe from all email notifications (I hope this is useful).
Hello. Per the experts at the conference indicated that we need to soak our
showerheads every six months. I forgot what they said about duration. They
recommended vinegar over chlorine.
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Also, I have read that it would take a higher dose of chlorine than what is
used in pools and hot tubs to kill MAC. That the MAC has developed a resistance
to chlorine by being exposed to repeated lower doses. It has also built up a
higher resistance to water temperature. It now takes 120 degrees and higher to
kill it.