(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.

Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2018

In reply to @america "Yes I’m hoping to watch it tomorrow!!! But I also has it on my DVR so..." + (show)

@america Hi! I am so glad you are seeing some improvement already with the tobramycin. Stick with it, you should feel a lot better before long. I am pretty stoked about the PBS special tomorrow night. I am having a dinner party with three friends coming over and then we will watch it together. They are excited to see it also.

Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2018

In reply to @beverly1945 "@windwalker thanks I hope I get it here .Do they speak about MAC" + (show)

@beverly1945 Hi Beverly. No, they don't specifically talk about mac. But what they do highlight is the exemplary care that Mayo provides and it being the best medical model worldwide. It talks about the cutting edge science behind it and the compassion that comes along with the science. The history of Mayo's humble beginnings are interesting as well.

Suzie2017 | @suzie2017 | Sep 24, 2018

In reply to @windwalker "@america Hi! I am so glad you are seeing some improvement already with the tobramycin. Stick..." + (show)

What time is the PBS special tomorrow night?

Colleen Young, Connect Director | @colleenyoung | Sep 28, 2018

Check out today's member spotlight. It features the incredible @windwalker. I love the title and think it is so apt for our Terri!

A Breath of Fresh Air: Meet @windwalker https://connect.mayoclinic.org/page/about-connect/newsfeed/a-breath-of-fresh-air-meet-windwalker/

Follow the About Connect page to read all the Member Spotlights: https://connect.mayoclinic.org/page/about-connect/

irene5 Irene Estes | @irene5 | Sep 28, 2018

In reply to @colleenyoung "Check out today's member spotlight. It features the incredible @windwalker. I love the title and think..." + (show)

Delightful- such a delightful read! And a truly great motto to live by!

boomerexpert | @boomerexpert | Sep 28, 2018

In reply to @colleenyoung "Check out today's member spotlight. It features the incredible @windwalker. I love the title and think..." + (show)

So well deserved...congrats, Terri!

heathert | @heathert | Sep 28, 2018

In reply to @colleenyoung "Check out today's member spotlight. It features the incredible @windwalker. I love the title and think..." + (show)

Thanks @colleenyoung and congrats to our wonderful mentor @windwalker, we are very grateful to have you both.

alleycatkate | @alleycatkate | Sep 28, 2018

@colleenyoung ...thank you and thanks for all you do for all of us.

alleycatkate | @alleycatkate | Sep 28, 2018

@windwalker ...Thank you, Terri, for your concern and care.....your devotion and hard work. You are appreciated and loved.

beegee | @beegee | Sep 30, 2018

Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous cough an Hugh amts. Of mucus that I try hard to keep coughing up. Also get SOB an use oxygen. I take 250 mg. Zithromycin daily. Also on Gammagard IV to raise immunity.as.have pneumonia 4 times. I am. 82 an guess lucky lived this.long.Some days really tough. Hope they find a cure for this.Never smoked but exposed to secondary smoke for 18 yes.

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