(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@alleycatkate

@anniepie ..I am so happy it is not suggested that cats are carriers….I just couldn't go a day without kissing mine. Haha. Thanks for your thoughtful reply on the birds.

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@alleycatkate I know how you feel, our wee dog rolls in bird poop and eats it, so I am concerned that when I pat him I get it on my hands then put them in my mouth. Also birds used to sit above our spa as we had a bigoda and probably poop in the water.

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@heathert…haha…dogs can be gross. We have one that eats Everything… And likes to roll in dead animals. Just another reason that I am a germa-phobe and I have finally mastered keeping my hands completely clear of my face. I think it is a must for all of us. Don't let that wee dog kiss you on the lips. 🙂

Liked by heathert

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@boomerexpert

I've written about it a few times here…wish the search algorithm worked more precisely but try doing a search for "whole house water filters" and see if all the info I've shared pops up…

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Terri, I know how frustrating the search function is currently on Connect. We're working on improving it. That's a flimsy excuse, I realize. But I want you to know we hear you and it will be better (not soon enough), but it will come. Stick with us. I saw some preliminary prototyping today and I'm hopeful.

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@alleycatkate

@heathert…haha…dogs can be gross. We have one that eats Everything… And likes to roll in dead animals. Just another reason that I am a germa-phobe and I have finally mastered keeping my hands completely clear of my face. I think it is a must for all of us. Don't let that wee dog kiss you on the lips. 🙂

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@alleycatkate…..I love dogs….still Mourn the passing of our daughter’s pug 2 years ago. But am grossed out when George the pug mixture who was rescued from humane society licks and kisses daughter right on lips. The Milwaukee newspaper had articles about people loosing limbs after acquiring this rare but vicious bacteria transmitted Thru kissing their dogs. The new amputees were not immunocompromised. I shared the articles with daughter….to no avail.tdrell

5E41F146-D36C-48B8-A63E-42604DB0B627

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@alleycatkate

@heathert…haha…dogs can be gross. We have one that eats Everything… And likes to roll in dead animals. Just another reason that I am a germa-phobe and I have finally mastered keeping my hands completely clear of my face. I think it is a must for all of us. Don't let that wee dog kiss you on the lips. 🙂

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@alleycatkate they are just so gross! when ours has some poop on him he is washed with dettol which he hates but it doesnt stop him rolling in it.. No I do not let him lick my face, share our plates or ice creams etc. Love him to bits tho.

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@colleenyoung

Terri, I know how frustrating the search function is currently on Connect. We're working on improving it. That's a flimsy excuse, I realize. But I want you to know we hear you and it will be better (not soon enough), but it will come. Stick with us. I saw some preliminary prototyping today and I'm hopeful.

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Thanks, Colleen…the good news, when I tried that search useful posts came up!

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@boomerexpert

Thanks, Colleen…the good news, when I tried that search useful posts came up!

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Hi. Just read your post. Are you on the “delightful meds”for MAC”

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@boomerexpert

With a whole house 0.2 micron water filter, you can take as many hot showers/baths as you wish!

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@boomerexpert Please send more details about whole house 0.2 micron water . Where are they sold. what is best brand, etc. Thanks so much!

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@tdrell

@alleycatkate…..I love dogs….still Mourn the passing of our daughter’s pug 2 years ago. But am grossed out when George the pug mixture who was rescued from humane society licks and kisses daughter right on lips. The Milwaukee newspaper had articles about people loosing limbs after acquiring this rare but vicious bacteria transmitted Thru kissing their dogs. The new amputees were not immunocompromised. I shared the articles with daughter….to no avail.tdrell

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@tdrell Cute photo! You are right…Lots of bacteria there!

Liked by tdrell

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@londonritt

@boomerexpert Please send more details about whole house 0.2 micron water . Where are they sold. what is best brand, etc. Thanks so much!

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@havah do a site search here for "whole house water filter" and my previous posts with that information will hopefully come up!

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@boomerexpert many thanks!!!!

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@boomerexpert

@havah do a site search here for "whole house water filter" and my previous posts with that information will hopefully come up!

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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.

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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…

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@boomerexpert

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…

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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…..

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@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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