(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.

Merry, Alumni Mentor | @merpreb | Apr 4, 2019

soflo- Good afternoon- I live in southern New England. What part of the country do you live in? And, nebulizers are safe.

sounder27 | @sounder27 | Apr 4, 2019

In reply to @merpreb "soflo- Good afternoon- I live in southern New England. What part of the country do you..." + (show)

Merpreb. I also live in Southern New England. I’ve had bronchiectisis and Mac for about 5 years.

Merry, Alumni Mentor | @merpreb | Apr 5, 2019

@sounder27- Good morning. I see Dr. Donat in East Geenwich, RI. You will need a referral though. Do you live close enough?

sounder27 | @sounder27 | Apr 5, 2019

Yes. I live very close to East Greenwich. ..a 15 minute drive. My general practitioner is in East Greenwich. Is your doctor a specialist in MAC?

irene5 Irene Estes | @irene5 | Apr 5, 2019

Hi. This is irene5. I live in Killingly, Ct.( small world)

Merry, Alumni Mentor | @merpreb | Apr 6, 2019

In reply to @sounder27 "Yes. I live very close to East Greenwich. ..a 15 minute drive. My general practitioner is..." + (show)

@sounder27- Morning- Wow! Another Rhody, hello. I have no idea but call the office and ask. Meanwhile check him out on line.

Terri Martin, Volunteer Mentor | @windwalker | Apr 9, 2019

@glendamoseley do you see this post started by @katemn? Scroll up from here into the blue area where you will see @katemn and her picture icon. You can read that post, plus click on her picture and everything she has ever posted should come up.

Terri Martin, Volunteer Mentor | @windwalker | Apr 9, 2019

In reply to @katemn "Boomer, I don't mean to frighten her .. but when @pfists Shari said "I have been..." + (show)

For all considering natural alternatives.....

anniepie | @anniepie | Apr 16, 2019

In reply to @windwalker "For all considering natural alternatives....." + (show)

I wish all of you have a safe and well Easter