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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Hi. Just read your post. Are you on the “delightful meds”for MAC”
@boomerexpert Please send more details about whole house 0.2 micron water . Where are they sold. what is best brand, etc. Thanks so much!
@tdrell Cute photo! You are right...Lots of bacteria there!
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1 Reaction@havah do a site search here for "whole house water filter" and my previous posts with that information will hopefully come up!
@boomerexpert many thanks!!!!
Hi Boomerexpert...I thought I remember reading that it was suggested by dr afalkingham, National Jewish, and Dr Aksmit, Mayo Clinic, that they recommended 0.2 micron filters on taps, as opposed to whole system, because biofilm still forms on the taps, including shower heads. I remember Katherine also looking into her files, pulling up the same information.
I looked into whole house filter via NJ and the 0.2 micron filter was the recommendation...however...seems to me that by ridding my system of the MAC microbes at the source, I'm doing myself a great service...no MAC-laced water going through my taps/showers...
Hi Boomerexpert....when I googled National Jewish, 0.2 micron filters, bacteria and water filter, Mayo Clinic....it clearly states, by Dr Falkinham, and Dr Aksmit, that biofilm will still form on taps....even with a 0.2 micron filter whole house system..there is still Mac forming on taps. Katherine accessed this from her files...I don't believe that any new info has come out since.....
@jennifer I believe I got my info from a 2018 teleconference w/doc from NJ...info on this and other MAC-killing approaches (like temp of hot water heater) seem to be changing yearly...ex: in 2017 the recommendation was to keep the hot water heater at 135-140 to kill MAC there...further study in 2018 showed that wasn't helpful as MAC became immune to the higher temps so the regular 120-130 was recommended... For me, even if some MAC biofilm is forming on taps, none is coming from my water source, so I'm greatly reducing my exposure. Will let you know if it's working when I see my pulmo in Feb...
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1 Reaction@tdrell, @alleycatkate, @heathert, I just saw a program last night where a guy got tapeworms from his puppy that would kiss him on the mouth. The puppy was treated for , but not him right away because he didn't know he had them. One got into his spleen and turned into a cyste. 40 years pass and the cyste became malignant and his liver enlarged 10 times the size it should have been. This caused other serious health issues which cleared up once the spleen was removed. So, yes, kissing dogs on the mouth is gross and can be dangerous.
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