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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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 | Jul 6, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert @flib ..I think if anyone watched a video like meet your meat, or any video on utube about factory farming....they would keel over and faint....but they will not look and pretend they are not part of the intense cruelty done to these animals. They should own up to paying to have these animals tortured.!! Oh God! Don't start me. Pardon the rant.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@auntnanny, Arthritis is a drag, I get occassional flares in my knees, hips, and hands. The knees are the worst. I do a 10 round of prednisone and that clears it up for a long period of time. Have you ever done a 10 day taper of prednisone for it?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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O

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @alleycatkate "Anyone...Question on Clear Lung by Ridgecrest. Do most using this preparation use it continually or do..." + (show)
@alleycatkate

Anyone...Question on Clear Lung by Ridgecrest. Do most using this preparation use it continually or do you just use as needed for breathing difficulties, colds, excess phlegm... etc? Thanks for thoughts on this.

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@alleycatkate I believe Nick has said in the past that she uses Clear Lung as needed.

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Flib | @flib | Jul 7, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Alleycat, I'm with you. Perhaps a hundred years from now, people will look back at the horrific way we treated animals and wonder what kind of species we were.

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nick52 | @nick52 | Jul 7, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@allaycatkate that is why we need more farmers like in the old days to raise and treat good the animal.  I was raised on a farm and the animal were our friends and my father would never let us know when one was needed for food. They were kill right on the spot

no suffering but today money talks! Not only animals are badly treated but children are now separated from their parents! What a shame a for a develop country. What century are we going back? My ancestors were deported the same way in 1755.? Unbelievable!

Cruelty is beyond my believe. All the crualty to animals, women, childrens  in this world

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alleycatkate | @alleycatkate | Jul 7, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@nick52 It seems we have lost some of our humanity...My heart aches thinking of the suffering...and especially to the innocents. Nick...What a fun childhood, growing up with baby piglets and lambs as your friends.

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tdrell | @tdrell | Jul 7, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@windwalker...have you ever seen the documentary "Food Inc" that shows more of what you described??? terri from tdrell

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tdrell | @tdrell | Jul 7, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@nick52...a brief neutral comment.....l do donate some time and money to support my political beliefs....but l am careful not to watch too many news shows ..even .those that agree with my political beliefs...l either watch old time movies...especially the Fred Astaire/Ginger Rogers type or the Food Network. I feel to do otherwise gets me too agitated/stressed and this affects my physical self.onlI only spend time with like thinking friends....family and spouse all think like l do. I feel very lucky/blessed.tdrell

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boomerexpert | @boomerexpert | Jul 7, 2018

@alleycatkate before we end this none MAC discussion as it's not germane to the site's purpose, here's my take on how we must learn to treat all species https://adviceforboomers.com/2017/07/03/so-whos-the-animal/ share if you like it.

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