1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

alleycatkate | @alleycatkate | Feb 8, 2019
In reply to @anniepie "@pfists @america Yes the research literature on environmental sources of MAC etc show some animals and..." + (show)
@anniepie

@pfists @america Yes the research literature on environmental sources of MAC etc show some animals and birds can be vectors carrying the disease -- but this is UNCOMMON. It is much more likely that we got our MAC, MAI, Abscessus from breathing in steamy water from showers, or from tap water or potting mix, sphagnum moss or other soil -- wet or dry, and occasionally from house dust. But it is a lot less common to get it from animals or birds and the animal often shows signs of sickness.
So love the bird -- it is most likely to be fine -- but with normal hand washing and maybe don't kiss it.
Hugs from Annie

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@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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1 reply
boomerexpert | @boomerexpert | Feb 8, 2019
In reply to @america "I made a lot of changes in my home since I was diagnosed. I love hot..." + (show)
@america

I made a lot of changes in my home since I was diagnosed. I love hot tubs and hot showers! I love the plants in my home! I love to entertain and go out to dinners! I love having all my grandkids and kids over! I love to to go on cruises and vacations! But for the past year I am more of a home buddy. I gave up all my house plants, stop taking hot showers and don’t get in a hot tub. Don’t and can’t entertain or going out to dinners. I can’t go on a cruise or take much of a vacation. I can’t have my family over because the kids are always carrying something like a cold or virus. But I’m happy to have some really good day! Some may not be good but I try to make the best of what I can do. I think getting Pseudomonas was a horrible experience because it fast growing and it made me so sick. I am doing much better and I think the the Tobramycin has knocked that out. I will know better next month. I hope and pray that I will be tested negative. But hope is good. About my bird I will let everyone know what my doctor knows about it. But for now one day at a time. Hugs Rita.

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

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2 replies
america | @america | Feb 8, 2019
In reply to @boomerexpert "With a whole house 0.2 micron water filter, you can take as many hot showers/baths as..." + (show)
@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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I would love to know more about that water filter!

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boomerexpert | @boomerexpert | Feb 8, 2019

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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1 reply
heathert | @heathert | Feb 8, 2019
In reply to @alleycatkate "@anniepie ..I am so happy it is not suggested that cats are carriers....I just couldn't go..." + (show)
@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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alleycatkate | @alleycatkate | Feb 8, 2019

@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 8, 2019
In reply to @boomerexpert "I've written about it a few times here...wish the search algorithm worked more precisely but try..." + (show)
@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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tdrell | @tdrell | Feb 8, 2019
In reply to @alleycatkate "@heathert...haha...dogs can be gross. We have one that eats Everything... And likes to roll in dead..." + (show)
@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
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2 replies
heathert | @heathert | Feb 8, 2019
In reply to @alleycatkate "@heathert...haha...dogs can be gross. We have one that eats Everything... And likes to roll in dead..." + (show)
@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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boomerexpert | @boomerexpert | Feb 9, 2019
In reply to @colleenyoung "Terri, I know how frustrating the search function is currently on Connect. We're working on improving..." + (show)
@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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