(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.

irene5 Irene Estes | @irene5 | Jan 7, 2018

In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)

Milk thistle is a very good one for the liver. I have taken it for years.

pkayh | @pkayh | Jan 7, 2018

In reply to @dcoburn "Anyone know how I can get one email a day, with the posts of that day?..." + (show)

I just joined connect. I can't possibly respond to all the messages. How can I just respond to those that deal specifically with a subject?
Also, I would like to say thanks to all who did respond to my first efforts.
Pat

Colleen Young, Connect Director | @colleenyoung | Jan 7, 2018

In reply to @cathyxyz "I have been part of the chat group for about 5 months, and I would like..." + (show)

Hi @suenfl, you'll notice that I removed your personal email address from your message above. Connect is a public website, so we recommend using the private message to exchange personal contact info. To private message another member, simply click their @username or profile image. This will take you to their profile page where you will see the option to Send Private Message.

Colleen Young, Connect Director | @colleenyoung | Jan 7, 2018

In reply to @jkiemen "If we have this information maybe we can compile it in a letter to the companies..." + (show)

@nick52, en anglais on dit Infectious Disease Specialist ou ID physician. En effet, je préfère la phrase "infectiologist". 🙂

Colleen Young, Connect Director | @colleenyoung | Jan 7, 2018

In reply to @franthony "How do I post in this forum? I just joined today, and was just diagnosed with..." + (show)

Welcome to the MAC group on Mayo Clinic Connect, @franthony
You posted perfectly to the forum. Here are step-by-step instructions about how to use the site https://connect.mayoclinic.org/get-started-on-connect/
If you have any problems getting started, you can send me an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

We look forward to getting to know about you? Do you see a pulmonologist or an infectious disease specialist?

Colleen Young, Connect Director | @colleenyoung | Jan 7, 2018

In reply to @dcoburn "Anyone know how I can get one email a day, with the posts of that day?..." + (show)

Hi @pkayh and @dcoburn,
I understand that the number of emails from Connect can be overwhelming. You can tailor which notifications you receive:
1. Every time a new post is made
2. In your digest only (one email per day or per week)
3. Onsite notifications only (no emails)
4. unfollow. No notifications onsite or by email

Learn how to set your notification preferences here: https://connect.mayoclinic.org/get-started-on-connect/#notification-preferences

pkayh | @pkayh | Jan 7, 2018

In reply to @franthony "How do I post in this forum? I just joined today, and was just diagnosed with..." + (show)

I see a pulmonologist in AZ in winter and a different pulmonologist in summer in Michigan. I would like very much to know if there is a specialist in bronchiectasis at the Mayo Clinic in Scottsdale. I was diagnosed in 2002 and in the last 2 or 3 years have developed much more shortness of breath and loss of energy and would like to know if I am doing as much as I should be doing.