(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

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
@windwalker

@irene5 Hi Irene! Good hearing from you!

Jump to this post

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

Liked by pattriciaann

REPLY

@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

REPLY
@pattriciaann

@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

Jump to this post

@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!

Liked by pattriciaann

REPLY
@pattriciaann

@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

Jump to this post

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

Liked by pattriciaann

REPLY

@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

REPLY
@colleenyoung

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

Jump to this post

@colleenyoung it worked!

REPLY
@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

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

REPLY

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?

REPLY
@unicorn

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?

Jump to this post

@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.

REPLY
@heathert

@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

Jump to this post

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

Liked by heathert

REPLY
@heathert

@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

Jump to this post

Terrific! Unfortunately and as usual, this study is not being conducted in the US… we must advocate more loudly to get our own country off its national ass and take MAC as seriously as to other advanced nations….

Liked by heathert

REPLY
@boomerexpert

Terrific! Unfortunately and as usual, this study is not being conducted in the US… we must advocate more loudly to get our own country off its national ass and take MAC as seriously as to other advanced nations….

Jump to this post

@boomerexpert Absolutely correct! My own doctor is very interested in these studies! When I participated in that study several months ago, that was one thing I tried to make perfectly clear! Maybe I should have said it the way you just did!! 🙂

Liked by heathert

REPLY
@irene5

@boomerexpert Absolutely correct! My own doctor is very interested in these studies! When I participated in that study several months ago, that was one thing I tried to make perfectly clear! Maybe I should have said it the way you just did!! 🙂

Jump to this post

@windwalker hi question do you know while in remission is there anything to take on a daily bases for protection against another brakeout especially bf the flu season that previous set mine off

REPLY
@irene5

@boomerexpert Absolutely correct! My own doctor is very interested in these studies! When I participated in that study several months ago, that was one thing I tried to make perfectly clear! Maybe I should have said it the way you just did!! 🙂

Jump to this post

you'll have more opportunities…and yes, docs are quite competitive and don't like knowing that other countries are ahead of us

REPLY
Please login or register to post a reply.