1. < MAC & Bronchiectasis

(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.

Flib | @flib | Sep 19, 2018
In reply to @alleycatkate "@flib I am sorry to hear of your troubles and that your lungs are filling.. Have..." + (show)
@alleycatkate

@flib I am sorry to hear of your troubles and that your lungs are filling.. Have you tried the clear lung herbal remedy? I wonder if that would help. ?? I do think that you will like the Garden of Eden Vanilla with a banana...that used to be my breakfast for over a year. Very nourishing. Kate

Jump to this post

@alleycatkate. Thank you. It really does help to have understanding. It's very scare in my life. I've got the bananas and GoE and will try it tomorrow. flib

REPLY
Flib | @flib | Sep 19, 2018
In reply to @526laura "My heart goes out to you. Wish I had some answers" + (show)
@526laura

My heart goes out to you.
Wish I had some answers

Jump to this post

Thank you for your sweet message.

REPLY
Flib | @flib | Sep 19, 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

Flib and America...hahaha yes cast a spell! I am 5"11' and weigh 124, can't stop losing. Tomorrow I will try smoothies, anything. People always try to get me to eat but it goes right through. My cheeckbones are way too prominant.
azithromyacin for 2 years wiped out bowels, and tinnitus is so extreme, evil stuff. not alone! xo

Jump to this post

@a@unicorn. Well, you're at least as thin as I am. I'm 5"7, Just bought some new clothes because I'm disappearing in what I have. Kind of fun, and might as well if you have to be runway thin. Next thing you know I'll be into piercings. Azithromyacin did me in. I felt better on it but losing some hearing was not worth it. Fortunately, my lung doctor knew what she was doing and got me off it before I lost it all.
So tomorrow is Thursday smoothies.

REPLY
1 reply
Flib | @flib | Sep 19, 2018
In reply to @windwalker "@flib and @america, I had the same issue. Nothing tasted good and had zero appetite. I..." + (show)
@windwalker

@flib and @america, I had the same issue. Nothing tasted good and had zero appetite. I thought I'd never like food again. Once the infection was knocked out, all of that changed. Food tastes good again, and have my appetite back. (Putting on some fat too). I hope that you two can get back to enjoying food again too before long. Hugs!

Jump to this post

I still hope to get well but since there are no meds I can take it's a rather small hope. I don't miss food very much. Never was a big part of my life. Thanks for the hugs.

REPLY
unicorn | @unicorn | Sep 20, 2018
In reply to @flib "@A@unicorn. Well, you're at least as thin as I am. I'm 5"7, Just bought some new..." + (show)
@flib

@a@unicorn. Well, you're at least as thin as I am. I'm 5"7, Just bought some new clothes because I'm disappearing in what I have. Kind of fun, and might as well if you have to be runway thin. Next thing you know I'll be into piercings. Azithromyacin did me in. I felt better on it but losing some hearing was not worth it. Fortunately, my lung doctor knew what she was doing and got me off it before I lost it all.
So tomorrow is Thursday smoothies.

Jump to this post

piercings hahaha...we'll look like meth heads, good grief. For sure kind of fun. All my friends hate me. Jeans look great, really I could wear anything now, but so thin it scares me. Got on scale last night and was 124, so ate cottage cheese and toast, just anything I could find. I didn't eat dinner for most of my life, never thought healthy, but now large dinners are required!! It can get expensive and a lot of time I just don't have the energy to do it. when I do go out, i shock people at how much I eat. I dont go to bathroom afterwards because they think i go throw up!! My gorgeous friend died a few months ago, I thought she was anorexic but she said she had IBS. I didnt believe her and didnt see her for last 2 years because we looked freaky together, both rail thin and 5"11. Feel badly now because I understand more, but too late. So now I eat a lot and work out as much as I can for strong muscles. Just got over the flu, so, dangerous for us, ran 101. fought it off and almost 71 now so still hanging in there, No coughing up blood in few years, enjoying what I've got and looking great in those jeans! Keep eating, working out, have more fun..... xo

f

REPLY
2 replies
irene5 Irene Estes | @irene5 | Sep 20, 2018
In reply to @unicorn "piercings hahaha...we'll look like meth heads, good grief. For sure kind of fun. All my friends..." + (show)
@unicorn

piercings hahaha...we'll look like meth heads, good grief. For sure kind of fun. All my friends hate me. Jeans look great, really I could wear anything now, but so thin it scares me. Got on scale last night and was 124, so ate cottage cheese and toast, just anything I could find. I didn't eat dinner for most of my life, never thought healthy, but now large dinners are required!! It can get expensive and a lot of time I just don't have the energy to do it. when I do go out, i shock people at how much I eat. I dont go to bathroom afterwards because they think i go throw up!! My gorgeous friend died a few months ago, I thought she was anorexic but she said she had IBS. I didnt believe her and didnt see her for last 2 years because we looked freaky together, both rail thin and 5"11. Feel badly now because I understand more, but too late. So now I eat a lot and work out as much as I can for strong muscles. Just got over the flu, so, dangerous for us, ran 101. fought it off and almost 71 now so still hanging in there, No coughing up blood in few years, enjoying what I've got and looking great in those jeans! Keep eating, working out, have more fun..... xo

f

Jump to this post

@unicorn you should probably get the high dose flu shot so you don’t get sick again!

REPLY
onana | @onana | Sep 20, 2018
In reply to @unicorn "piercings hahaha...we'll look like meth heads, good grief. For sure kind of fun. All my friends..." + (show)
@unicorn

piercings hahaha...we'll look like meth heads, good grief. For sure kind of fun. All my friends hate me. Jeans look great, really I could wear anything now, but so thin it scares me. Got on scale last night and was 124, so ate cottage cheese and toast, just anything I could find. I didn't eat dinner for most of my life, never thought healthy, but now large dinners are required!! It can get expensive and a lot of time I just don't have the energy to do it. when I do go out, i shock people at how much I eat. I dont go to bathroom afterwards because they think i go throw up!! My gorgeous friend died a few months ago, I thought she was anorexic but she said she had IBS. I didnt believe her and didnt see her for last 2 years because we looked freaky together, both rail thin and 5"11. Feel badly now because I understand more, but too late. So now I eat a lot and work out as much as I can for strong muscles. Just got over the flu, so, dangerous for us, ran 101. fought it off and almost 71 now so still hanging in there, No coughing up blood in few years, enjoying what I've got and looking great in those jeans! Keep eating, working out, have more fun..... xo

f

Jump to this post

@onana Unicorn, I love your attitude. It encourages me to find what's good in my life and enjoy it.

REPLY
1 reply
america | @america | Sep 20, 2018

Hey can anyone tell me which one is better? The Aerobika or the Acapella? Thanks

REPLY
unicorn | @unicorn | Sep 20, 2018
In reply to @onana "@onana Unicorn, I love your attitude. It encourages me to find what's good in my life..." + (show)
@onana

@onana Unicorn, I love your attitude. It encourages me to find what's good in my life and enjoy it.

Jump to this post

onana oh for sure flu and pneumonia, flu every year!! Doing everything I can to increase my odds, xo

REPLY
heathert | @heathert | Sep 20, 2018

Hi all there is a message https://www.ntminfo.org/ about writing to the FDA to approve Inhaled Amikacin, this is a very important drug, I was immune to the big 3 but Amikacin got me a clear MAC result when I was in the trial. Please write to the FDA.

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