1. < MAC & Bronchiectasis
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(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2017

@lindam272, Thank you for posting that, I will sign onto that. I went to the conference they hosted last spring, and it was very informative.

REPLY
1 reply
Profile picture for nick52
nick52 | @nick52 | Nov 29, 2017
In reply to @lindam272 "This just came across my email from the COPDFoundation.org for anyone who is interested: Dear BronchandNTM360social..." + (show)
Profile picture for lindam272 @lindam272

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!

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Dear Lindham,

Can you tell me where the conference will be held?  I am very interested.

REPLY
Profile picture for lindam272
lindam272 | @lindam272 | Nov 29, 2017
In reply to @lindam272 "This just came across my email from the COPDFoundation.org for anyone who is interested: Dear BronchandNTM360social..." + (show)
Profile picture for lindam272 @lindam272

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!

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@nick52 It's a teleconference so you just call in. Once you register, they send you a phone number and code to put in. I will forward the email to you. Linda

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 2, 2017
In reply to @lindam272 "This just came across my email from the COPDFoundation.org for anyone who is interested: Dear BronchandNTM360social..." + (show)
Profile picture for lindam272 @lindam272

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!

Jump to this post

@lindam272 , This would be a great benefit to our members, especially those that are newly diagnosed.

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 2, 2017
In reply to @lindam272 "This just came across my email from the COPDFoundation.org for anyone who is interested: Dear BronchandNTM360social..." + (show)
Profile picture for lindam272 @lindam272

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!

Jump to this post

Hi @nick52 and everyone,
Just a reminder that Mayo Clinic Connect is a public site. We recommend that you use the Private Message function to share personal contact information, such as emails. See item #7 in the Community Guidelines on how to protect yourself and others when using an open online community https://connect.mayoclinic.org/community-guidelines/

See instructions here on how to send a private message: https://connect.mayoclinic.org/get-started-on-connect/

REPLY
Profile picture for nick52
nick52 | @nick52 | Dec 2, 2017
In reply to @lindam272 "This just came across my email from the COPDFoundation.org for anyone who is interested: Dear BronchandNTM360social..." + (show)
Profile picture for lindam272 @lindam272

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!

Jump to this post

Sorry Colleenyoung!  All i know is click reply!  I thought it was replying as a private message! Thanks!

REPLY
Profile picture for nick52
nick52 | @nick52 | Dec 2, 2017
In reply to @windwalker "@lindam272, Thank you for posting that, I will sign onto that. I went to the conference..." + (show)
Profile picture for Terri Martin, Volunteer Mentor @windwalker

@lindam272, Thank you for posting that, I will sign onto that. I went to the conference they hosted last spring, and it was very informative.

Jump to this post

I found out the conference is a Telephone conference! Sorry for the bother anyone!

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 3, 2017
In reply to @lindam272 "This just came across my email from the COPDFoundation.org for anyone who is interested: Dear BronchandNTM360social..." + (show)
Profile picture for lindam272 @lindam272

This just came across my email from the COPDFoundation.org for anyone who is interested:

Dear BronchandNTM360social Member,

We are excited for the upcoming Town Hall teleconference on December 7, 2017 from 1-2pm EST, with expert speaker Dr. Kevin Winthrop from Oregon Health and Science University. If you have not yet registered, please click here to do so. This is a unique opportunity for community members to learn the basics about NTM and Bronchiectasis, as well as to ask an expert questions surrounding these chronic lung conditions. Please find the Agenda here to see all topics that will be discussed. The 2nd Town Hall will take place in early 2018. We will update you on the specifics when they become available.

Our focus this Autumn has been around transitioning from Summer to Fall and tips to help respiratory patients. There have been numerous blog posts and important questions added that we hope will be useful to you. We encourage you to log on and see what has been posted. If you have comments or information to share with your fellow patients, or if you are a healthcare provider or caretaker, please share your knowledge or experience.

Through the Winter months, we will discuss sleep and self-care, preparing for the holidays and how to tackle family gatherings while not pushing yourself too far. Do you have any tips to share with the community? Start the conversation!

If you have any questions about the upcoming events or anything else on BronchandNTM360social, please email us at Info@bronchiectasisandntminitiative.org.

Thank you all-we look forward to seeing around BronchandNTM360social!

Jump to this post

Posts made on Mayo Clinic Connect are public. When you reply by email, your messages are posted on the public forum. Click VIEW & REPLY at the bottom of the email notification to see the discussion on the site.

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Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Dec 18, 2017

We gotta hope they keep looking for treatments.

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