1. < MAC & Bronchiectasis
Profile picture for Katherine, Alumni Mentor

(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.

Profile picture for gbooth54
gbooth54 | @gbooth54 | Nov 21, 2024
In reply to @douglasr "My sister-in-law has just received the diagnosis of MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS..." + (show)
Profile picture for patricia @douglasr

My sister-in-law has just received the diagnosis of MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS so I am referring her to this forum to learn more about the disease and treatment. But why do I not see any comments later than 2016? Is it no longer active?

Jump to this post

We are definitely here!

REPLY
Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 21, 2024
In reply to @douglasr "My sister-in-law has just received the diagnosis of MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS..." + (show)
Profile picture for patricia @douglasr

My sister-in-law has just received the diagnosis of MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS so I am referring her to this forum to learn more about the disease and treatment. But why do I not see any comments later than 2016? Is it no longer active?

Jump to this post

@patricia, please refer her to this current discussion, then tell her to select to see the posts ordered "Newest to Oldest" Once she introduces herself she will be welcomed.
To get a good list of basic resources she can read here:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
I hope she joins us!

REPLY
1 reply
Profile picture for patricia
patricia | @douglasr | Nov 21, 2024
In reply to @sueinmn "@patricia, please refer her to this current discussion, then tell her to select to see the..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@patricia, please refer her to this current discussion, then tell her to select to see the posts ordered "Newest to Oldest" Once she introduces herself she will be welcomed.
To get a good list of basic resources she can read here:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
I hope she joins us!

Jump to this post

Thanks so much! Will forward this note to her.
Pat

Get Outlook for iOS< https://aka.ms/o0ukef&gt;

REPLY
Profile picture for vegita182
vegita182 | @vegita182 | Jan 19 10:15pm
In reply to @unicorn "Hmmm, I always had a little shortness of breath, but I actually went to the first..." + (show)
Profile picture for unicorn @unicorn

Hmmm, I always had a little shortness of breath, but I actually went to the first lung doctor when I had little bit of blood in sputum. I probably had this disease for many years without any symptoms, and was ok other than shortness of breath. It is very slow growing. But I know someone young that actually took medication for 2 years and got rid of MAC. Now he may not have had bronchiectasis, and he was young. He is the only one know of that got well, everyone else, including myself keeps reinfecting because of enlarged airways disease. My doc said I won't get rid of this, but can live a long life if I maintain sputum clearance and aerobics. Of course, when I cough up blood, that is a danger because of clotting an airway, so there is always some fear. See there is no hard set in stone way to handle this disease. Just gather info, educate, try everything doc and people on this site suggest, and hang on, there may be a cure coming some day. xo

Jump to this post

How old was he?

REPLY
Profile picture for six5532one
six5532one | @six5532one | Sep 22 8:35pm
In reply to @irene5 "@alleycatkate Hi Kate. I was getting them every six months in the beginning. Because I am..." + (show)
Profile picture for irene5 Irene Estes @irene5

@alleycatkate Hi Kate. I was getting them every six months in the beginning. Because I am not a spitting kind of gal -( dry as a bone) I have to have a yearly CT scan. Since being on the Arikayce, however, I have lots of the P and M words! Irene

Jump to this post

@irene5 I assume you have a hard time producing sputum samples. In order to get insurance coverage and/or financial assistance for Arikayce, did you need to have a bronchoscopy with a positive result six months after starting the big 3?

REPLY
1 reply
Profile picture for irene5 Irene Estes
irene5 Irene Estes | @irene5 | Sep 23 2:35am
In reply to @six5532one "@irene5 I assume you have a hard time producing sputum samples. In order to get insurance..." + (show)
Profile picture for six5532one @six5532one

@irene5 I assume you have a hard time producing sputum samples. In order to get insurance coverage and/or financial assistance for Arikayce, did you need to have a bronchoscopy with a positive result six months after starting the big 3?

Jump to this post

For insurance coverage for Arikayce which was a combination of the Arikayce assistance fund and Medicare I needed to be unable to tolerate the Big 3 or at least two of the Big 3 for I believe 6 months. I do not believe a bronch was necessary. I had had a bronch indicative of MAC after a sample had been sent out and plenty of CT’s that indicated it. I had had yearly bronchs done the last one I believe after the Arikayce treatment where the MAC was gone at that time but had been substituted with Aspergillosis. And yes - dry as a bone!! ( Classic Lady Windermere). I am unable to have further bronchs due to a complication that happened afterwords. No spit from this old lady ever! At UMASS they say my case is “complicated.” Ah, the joy of it all! Irene5

REPLY
Profile picture for reneemc
reneemc | @reneemc | Sep 23 5:25pm
In reply to @laborday24 "What is nac" + (show)
Profile picture for laborday24 @laborday24

What is nac

Jump to this post

N acetylcysteine

REPLY
View MoreView Less
Please sign in or register to post a reply.