(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.

irene5 Irene Estes | @irene5 | Sep 20, 2018

In reply to @windwalker "@irene5 Hi Irene! Good hearing from you!" + (show)

@windwalker I tried to send you a private message Terri, but it would not work for some reason.

pattriciaann | @pattriciaann | Sep 20, 2018

@irene5 I cannot get private messages to work either. It did a couple times now I get error. Also tried sending through email to @windwalker

irene5 Irene Estes | @irene5 | Sep 20, 2018

In reply to @pattriciaann "@irene5 I cannot get private messages to work either. It did a couple times now I..." + (show)

@pattriciaann Oh thank you!!! Not that I’m glad you couldn’t get it through either. Yes, that’s what happens to me - “error.” Thank you!

Colleen Young, Connect Director | @colleenyoung | Sep 20, 2018

In reply to @pattriciaann "@irene5 I cannot get private messages to work either. It did a couple times now I..." + (show)

Hi @pattriciaann and @irene5
I just sent each of you a private message. I didn't get an error. Can you please see if you received the PM that I sent you?
If you didn't receive it, please send me a message using this form so that I can help get to the bottom of the issue. https://connect.mayoclinic.org/contact-a-community-moderator/
Thanks, Colleen

heathert | @heathert | Sep 20, 2018

@windwakler and Hi all please look at this new NTM treatment called Molgradex by Savara Pharm Inc. They are in Phase III trials!!!!!!!!! Fingers crossed. http://www.marketwired.com/press-release/savara-initiates-phase-2a-clinical-study-molgradex-treatment-ntm-lung-infection-nasdaq-svra-2246289.htm

pattriciaann | @pattriciaann | Sep 21, 2018

In reply to @colleenyoung "Hi @pattriciaann and @irene5 I just sent each of you a private message. I didn't get..." + (show)

@colleenyoung it worked!

Terri Martin, Volunteer Mentor | @windwalker | Sep 21, 2018

In reply to @unicorn "Flib and America...hahaha yes cast a spell! I am 5"11' and weigh 124, can't stop losing...." + (show)

@unicorn Good morning Christa. Just curious, why did they choose azithromycin to treat your MAC?

unicorn | @unicorn | Sep 21, 2018

Hi Terri, I know they ran the sensitives and that may have been the one most potent for me. From what I have read that seems to b one of the standard big 3? Big pink pill?

Flib | @flib | Sep 21, 2018

In reply to @unicorn "Hi Terri, I know they ran the sensitives and that may have been the one most..." + (show)

@unicorn and Terri Azithromycin was the only one I responded to after the testing also. But it was the one that damaged my hearing. I recall it as a small pink pill, easy to take. I had no other side effects than the hearing loss. That is mentioned in the list of rare side effects. I wish I had been able to stay on it because I had no problems with it other than that big one and I felt a lot better on it. The scary part was that it was not a slow loss.it seemed to happen in a day...and that was my doctor's clue to get me off it immediately.

alleycatkate | @alleycatkate | Sep 21, 2018

In reply to @heathert "@windwakler and Hi all please look at this new NTM treatment called Molgradex by Savara Pharm..." + (show)

@hearthealth Thank you for posting the info on Molgradex. Very interesting and hope for those that cannot take the big 3.

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