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!

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

alleycatkate | @alleycatkate | Sep 2, 2019
In reply to @windwalker "@anniepie, Heather, Jennifer, Ling, Terri, and everyone else, thank you for the well wishes and prayers...." + (show)
@windwalker

@anniepie, Heather, Jennifer, Ling, Terri, and everyone else, thank you for the well wishes and prayers. Will keep you updated on how things go. Praying like crazy that monster stays off-shore. We are evacuating two hrs inland. (To start) if that thing makes landfall here; that may not be far enough. It's the tornados that spin off of the hurricanes that scare me the most.

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@windwalker
Somewhere i read that there are no tornadoes associated with this storm. ??? Our house experienced the destructive accompanying tornadoes with hurricane Francis and Jeanne. Yikes!
I’m glad to hear you have gotten out of it’s immediate path. Stay safe!! Fingers crossed for everyone.

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1 reply
chinasmom | @chinasmom | Sep 2, 2019
In reply to @windwalker "Becky, thank you for this prayer. Please keep them coming." + (show)
@windwalker

Becky, thank you for this prayer. Please keep them coming.

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@windwalker and others in this storms path. I can't even imagine what you all are going through. With a threat like this and the uncertainty of it all. It is so hard get around with chronic illness on a good day. May the coming days be easier as each day passes. With your community, family and pets being safe, calm and comfortable. Finding shelter from the storms looking out for one another as you help others and receive help for yourself . May God send blessings your way. All of you are loved and appreciated for all you do ♡♡♡

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2 replies
janovr | @janovr | Sep 2, 2019
In reply to @chinasmom "@windwalker and others in this storms path. I can't even imagine what you all are going..." + (show)
@chinasmom

@windwalker and others in this storms path. I can't even imagine what you all are going through. With a threat like this and the uncertainty of it all. It is so hard get around with chronic illness on a good day. May the coming days be easier as each day passes. With your community, family and pets being safe, calm and comfortable. Finding shelter from the storms looking out for one another as you help others and receive help for yourself . May God send blessings your way. All of you are loved and appreciated for all you do ♡♡♡

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Thank you.
I am scheduled for surgery but on stand by!🤪
Just waiting! 😀

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @janovr "Thank you. I am scheduled for surgery but on stand by!🤪 Just waiting! 😀" + (show)
@janovr

Thank you.
I am scheduled for surgery but on stand by!🤪
Just waiting! 😀

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I hope your surgery goes well when it goes down. Hugs to you!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @chinasmom "@windwalker and others in this storms path. I can't even imagine what you all are going..." + (show)
@chinasmom

@windwalker and others in this storms path. I can't even imagine what you all are going through. With a threat like this and the uncertainty of it all. It is so hard get around with chronic illness on a good day. May the coming days be easier as each day passes. With your community, family and pets being safe, calm and comfortable. Finding shelter from the storms looking out for one another as you help others and receive help for yourself . May God send blessings your way. All of you are loved and appreciated for all you do ♡♡♡

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Thank you. I rested up a lot yesterday to gear up for evacuating, etc.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @alleycatkate "@windwalker Somewhere i read that there are no tornadoes associated with this storm. ??? Our house..." + (show)
@alleycatkate

@windwalker
Somewhere i read that there are no tornadoes associated with this storm. ??? Our house experienced the destructive accompanying tornadoes with hurricane Francis and Jeanne. Yikes!
I’m glad to hear you have gotten out of it’s immediate path. Stay safe!! Fingers crossed for everyone.

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I haven't left yet. Leaving tomorrow a.m.

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boomerexpert | @boomerexpert | Sep 2, 2019
In reply to @alleycatkate "@windwalker Terri. So sweet of you to think of me. The storm was heading right at..." + (show)
@alleycatkate

@windwalker Terri. So sweet of you to think of me. The storm was heading right at us and we live on a barrier island. Yikes! 220 wind gusts are not for me!! We left with our critters for the west coast today. Kitties Were definitely not happy about the travel.
I hope you and your family and pets stay out of harms way. This looks like one storm to take seriously. Stay safe, Terri and everyone else in Dorian’s path...
Good luck and prayers!!
Kate

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Thanks. But recommend prep over luck and prayers.

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1 reply
tdrell | @tdrell | Sep 2, 2019
In reply to @boomerexpert "Thanks. But recommend prep over luck and prayers." + (show)
@boomerexpert

Thanks. But recommend prep over luck and prayers.

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I think prep and prayers are warranted for this hurricane

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janovr | @janovr | Sep 2, 2019
In reply to @windwalker "I hope your surgery goes well when it goes down. Hugs to you!" + (show)
@windwalker

I hope your surgery goes well when it goes down. Hugs to you!

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BLESS YOU!
Thanks!

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alleycatkate | @alleycatkate | Sep 7, 2019
In reply to @windwalker "Thank you. I rested up a lot yesterday to gear up for evacuating, etc." + (show)
@windwalker

Thank you. I rested up a lot yesterday to gear up for evacuating, etc.

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@windwalker Hi Terri, Did you evacuate? Hope you are Safe and your home was spared damage. Let us know how you are doing, please. We evacuated to the west coast but Dorian had little impact on Vero.
Kate

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