(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!

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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:

  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

@heathert

wow everything has gone so quiet, how is everybody doing?

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@nick52 Nicole that is wonderful news! Seems like all of your diligence in taking care of yourself is paying off. How long will you be in Florida?

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@heathert

wow everything has gone so quiet, how is everybody doing?

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thanks colleen I have no idea how I became a non member.

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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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@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.

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@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.

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@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

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

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@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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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/

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

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@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.

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

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@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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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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We gotta hope they keep looking for treatments.

Liked by pfists

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@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 Linda, I’ve received several linked-in invitations. These don’t seem to work.

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@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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Hi Joan, The LinkedIn messages from Linda were sent in error. Please ignore.

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