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!

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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.

pamelasc | @pamelasc1 | May 12, 2017
In reply to @lindam272 "Katherine, We will all be praying for your quick recovery. I just recently began yoga and..." + (show)
@lindam272

Katherine, We will all be praying for your quick recovery. I just recently began yoga and have been working out (weight training) since March. I was working out last summer but became so sick with MAC that I couldn't breathe well enough to continue until this past March. I can really tell the difference in my breathing since being at the gym. I hope that you find the same healing in your workouts.

I know that this couldn't have been an easy decision for you, and am grateful that you trust us to take care of the new people who join our group. We know the drill and will help the others that come along as well.

Be well and remember you are loved!!

Linda

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Hello - this is Pamela. I did not receive an update yesterday and today find that the "system" for getting the daily updates has changed in a major way. When I go to "Last", there is not the usual long list of emails from members. Are they still working out the glitches for this new system? Pamela

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 12, 2017
In reply to @lindam272 "Katherine, We will all be praying for your quick recovery. I just recently began yoga and..." + (show)
@lindam272

Katherine, We will all be praying for your quick recovery. I just recently began yoga and have been working out (weight training) since March. I was working out last summer but became so sick with MAC that I couldn't breathe well enough to continue until this past March. I can really tell the difference in my breathing since being at the gym. I hope that you find the same healing in your workouts.

I know that this couldn't have been an easy decision for you, and am grateful that you trust us to take care of the new people who join our group. We know the drill and will help the others that come along as well.

Be well and remember you are loved!!

Linda

Jump to this post

Hi Pamela,
Indeed we have made some exciting improvements to the Member Profiles, Notifications and the Digest. You can read more about them and send us your feedback here: http://mayocl.in/2r9CRht

Pamela, Can you tell me where you click "Last"? Do you mean the button on the website in this discussion thread that takes you to the last page of the discussion?

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swrtwdml | @swrtwdml | May 12, 2017

I seem to b having the same problem, When I click on " last" or any of the number pages I come up with the same post. Even when I click on "previous." I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

REPLY
9 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 12, 2017
In reply to @swrtwdml "I seem to b having the same problem, When I click on " last" or any..." + (show)
@swrtwdml

I seem to b having the same problem, When I click on " last" or any of the number pages I come up with the same post. Even when I click on "previous." I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

Jump to this post

I cannot figure it out either. I just reply straight from my own e-mail in
box.
 

REPLY
Linda | @llwortman | May 12, 2017
In reply to @lindam272 "Katherine, We will all be praying for your quick recovery. I just recently began yoga and..." + (show)
@lindam272

Katherine, We will all be praying for your quick recovery. I just recently began yoga and have been working out (weight training) since March. I was working out last summer but became so sick with MAC that I couldn't breathe well enough to continue until this past March. I can really tell the difference in my breathing since being at the gym. I hope that you find the same healing in your workouts.

I know that this couldn't have been an easy decision for you, and am grateful that you trust us to take care of the new people who join our group. We know the drill and will help the others that come along as well.

Be well and remember you are loved!!

Linda

Jump to this post

May I say! Amen...I thought it was just me! Ha. Thank youlinda 

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 12, 2017
In reply to @swrtwdml "I seem to b having the same problem, When I click on " last" or any..." + (show)
@swrtwdml

I seem to b having the same problem, When I click on " last" or any of the number pages I come up with the same post. Even when I click on "previous." I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

Jump to this post

Hi @swrtwdml,
The original message appears at the top of each page. This has always been this way even before yesterday's changes. This means that whether you're on page 1, 27 or 189, Katherine's original post appears at the top. So when you click on "Last", simply scroll down to see the latest messages. Hope this helps.

When do you get your test results? Fingers crossed for you.

REPLY
mac47 | @mac47 | May 12, 2017
In reply to @swrtwdml "I seem to b having the same problem, When I click on " last" or any..." + (show)
@swrtwdml

I seem to b having the same problem, When I click on " last" or any of the number pages I come up with the same post. Even when I click on "previous." I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

Jump to this post

Yes, this is confusing. Perhaps clearer directions will follow.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 12, 2017
In reply to @swrtwdml "I seem to b having the same problem, When I click on " last" or any..." + (show)
@swrtwdml

I seem to b having the same problem, When I click on " last" or any of the number pages I come up with the same post. Even when I click on "previous." I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

Jump to this post

@windwalker, that is a good method. When you reply directly from your inbox, your reply gets posted to the thread directly below the person to whom you're replying. However, I like to click View & Reply to see the stream of comments and read them like a conversation. That's why I'm glad we have both options.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 12, 2017

Hi all,
If anyone is having difficulties with the new digest, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/
I should be able to help you out or you may have uncovered a technical bug that we need to fix. Thanks for your patience and help.

REPLY
swrtwdml | @swrtwdml | May 12, 2017
In reply to @swrtwdml "I seem to b having the same problem, When I click on " last" or any..." + (show)
@swrtwdml

I seem to b having the same problem, When I click on " last" or any of the number pages I come up with the same post. Even when I click on "previous." I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

Jump to this post

Thanks for the info, will try that.  Hopefully, will have tests results in another 3 weeks.  

REPLY
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