(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.

nick52 | @nick52 | Aug 31, 2017

In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)

Hi Gina and Windwalker,

I am a new chatter. I have been diagnosed with MAC also. Things are just great for me no antibiotic but taking an herbal mix called Clear Lungs.

tdrell | @tdrell | Aug 31, 2017

In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)

Hi. Nick52...welcome to our great group...Windwalker is visiting her daughter out of town so she asked several of us "oldies" to fill in. You are not taking the antibiotics for NTM ...are you doing anything to bring up mucus daily? Tdrell

nick52 | @nick52 | Sep 1, 2017

In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)

Yes i taking clear lungs

Jo Ann K | @jkiemen | Sep 1, 2017

In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)

I wonder if any of the ingredients in that would interact with any of the BIG 3 especially the Azithromycin

Jo Ann K

nick52 | @nick52 | Sep 1, 2017

In reply to @colleenyoung "@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every..." + (show)

Did Katherine pass away because of that MAC?

nick52 | @nick52 | Sep 1, 2017

In reply to @ling123 "@colleenyoung Colleen, it is showing Following now. Thanks." + (show)

Hi,

I am new to this so I don 't know if it it is still active.

Colleen Young, Connect Director | @colleenyoung | Sep 1, 2017

In reply to @ling123 "@colleenyoung Colleen, it is showing Following now. Thanks." + (show)

Hi @nick52,
Welcome to the MAC group on Connect. The group is certainly still active. We're glad you're here.

To ensure that you get notifications about activity happening in the group, please follow the group. Here's how:
1. Go to the MAC group https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Click +Follow under the group description.

Here are more tips for setting yourself up:
- [Tip] How to Update Your Notification Settings https://connect.mayoclinic.org/discussion/tip-how-to-update-your-notification-settings/
- [Tip] Complete or Update Your Profile https://connect.mayoclinic.org/discussion/tip-complete-or-update-your-profile/

Do you see a pulmonologist or infectious disease doctor or other specialist? I'm sure you'll find a great deal of helpful information reading through the past posts. Feel free to ask questions.

Colleen Young, Connect Director | @colleenyoung | Sep 1, 2017

In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)

@nick52, was Clear Lungs recommended to you by a MAC specialist?

Like @jkiemen said, it is important to inquire about drug interactions. Just because something is herbal doesn't mean it is harmless. Jo Ann, it would be good to check with your specialists or pharmacist.

tdrell | @tdrell | Sep 1, 2017

In reply to @colleenyoung "@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every..." + (show)

Nick52...when our mentor Windwalker returns she will double check my answer but I don't believe the MAC was direct cause of Katherines death....but rather other virulent bacterias she acquired that would not respond to medication...that and a very immunocompromised body.tdrell

tdrell | @tdrell | Sep 2, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

Windwalker....now both adult kids have been told re my being an Alpha 1 anti trypsin carrier...both refuse being tested....convinced that even thru private foundation, somehow insurance companies will find out....sad. Tdrell

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