(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

Thanks for the link. It is very good information to have.

REPLY
@anniepie

Thanks Kate @alleycatkate — the fires came about 3 miles from me but were very close for my niece. I have used a mask on some days for the smoke but keep all the windows closed, and use my asthma puffer a bit more. I will be careful. How are you going? I hope all is well for you. Hugs, Annie

Jump to this post

@anniepie Hi. Am wondering if you are ok? I hope the fires are out that came so close to you.

REPLY
@windwalker

@anniepie Hi. Am wondering if you are ok? I hope the fires are out that came so close to you.

Jump to this post

Thanks Terry @windwalker for asking, yes I'm okay and the fires near me and my niece are out at the moment. (At one stage in the last few weeks, there was a fire front about 6,000 kilometers long in total — around 3,700 miles long). But people around Australia are worried because it's still only spring here — summer could be even worse. I hope not.
I'm still coughing a lot, but today it's not caused by smokey air — just the MAC/MAI.

REPLY
@tdrell

@boomerexpert….thanks for the link to vit D level and its involvement with respiratory issues…..3 years ago at my first appt at NJH with Dr Huitt she brought up the subject….now l see why….terri @tdrell

Jump to this post

@tdrell and @boomerexpert The Mayo doctors agree that Vitamin D makes a big difference in lung health. I keep forgetting to take it though.

REPLY

@tdrell thanks! I'll start taking more.

REPLY
@windwalker

@tdrell and @boomerexpert The Mayo doctors agree that Vitamin D makes a big difference in lung health. I keep forgetting to take it though.

Jump to this post

Teri are you at a latitude at which you’re able to catch some mid-day “rays?

REPLY
@thumperguy

Teri are you at a latitude at which you’re able to catch some mid-day “rays?

Jump to this post

@thumperguy….no …..wisconsin ….does not allow for Vit D naturally…@tdrell

REPLY
@windwalker

@tdrell and @boomerexpert The Mayo doctors agree that Vitamin D makes a big difference in lung health. I keep forgetting to take it though.

Jump to this post

Hi to both Terris @windwalker and @tdrell. Recently I read that high dose vitamin D can also boost the 'natural antibiotic' — cathelicidin — that the lung's macrophages produce. This helps to kill off mycobacteria.
(Mycobacteria often live inside the macrophages in our lungs. Cathelicidin is produced in macrophages to kill off bacteria — it's an important part of the immune system. People who succumb to MAC MAI don't produce enough natural antibiotic inside their macrophages).
High dose Vitamin D once every 2 or 3 months is something I want to try. Thanks for reminding me, Annie

REPLY

@anniepie is the high dose D given as an infusion?

REPLY

What would a high dose be if one was taking vitamin D orally instead of a periodic IV?

REPLY
Please sign in or register to post a reply.