(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.

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.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 30, 2018

In reply to @beegee "Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous..." + (show)

Hi @beegee,

You’ve come to the right place to talk, share and get support from members who understand what you are going through – welcome. I'm certain that @windwalker @boomerexpert and others in this incredible group will join in with their insights and experiences.

Terri Martin, Volunteer Mentor | @windwalker | Sep 30, 2018

In reply to @beegee "Diagnosed in 2010. On meds for over 2 yrs. Sputum still shows MAC an have continuous..." + (show)

@beegee Hi there. It is nice hearing from you. I am sorry that you are having such a tough time of it right now. I know that all of that coughing and congestion is miserable. I went through years of it myself. If you don't mind my asking; do you know what kind of mac you have? When was your last sputem test?

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