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.

Jennifer | @megan123 | Sep 1, 2019
In reply to @windwalker "Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like..." + (show)
@windwalker

Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like we could be a direct hit for hurricane Dorian. So far, the model has all of the same patterns as hurricane Mathew that freakishly turned and devastated Hilton Head Island several yrs ago. I live on the other side of the bridge that goes onto Hilton Head. At this point, it is hard to tell which direction to drive out of here to.

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Oh no....u might have to get out of there...might not hit Florida now, but aiming for Carolin’s...❤️🙏🏻

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ling123 | @ling123 | Sep 1, 2019

@windwalker888 Hope everything turns out OK with you and your family.

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tdrell | @tdrell | Sep 1, 2019
In reply to @windwalker "Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like..." + (show)
@windwalker

Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like we could be a direct hit for hurricane Dorian. So far, the model has all of the same patterns as hurricane Mathew that freakishly turned and devastated Hilton Head Island several yrs ago. I live on the other side of the bridge that goes onto Hilton Head. At this point, it is hard to tell which direction to drive out of here to.

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@windwalker and all others in path of Dorian....sending white light....keep your health up in spite of the ...you don't need flare ups!!!@tdrell ...will await word of your safety..

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sounder27 | @sounder27 | Sep 1, 2019
In reply to @windwalker "Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like..." + (show)
@windwalker

Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like we could be a direct hit for hurricane Dorian. So far, the model has all of the same patterns as hurricane Mathew that freakishly turned and devastated Hilton Head Island several yrs ago. I live on the other side of the bridge that goes onto Hilton Head. At this point, it is hard to tell which direction to drive out of here to.

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Windwalker. My thoughts and prayers are with you during the hurricane. My brother and sister in law left this afternoon. Hopefully it will stay off shore a bit as predicted.

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anniepie | @anniepie | Sep 2, 2019
In reply to @windwalker "@anniepie Hi Annie! I noticed this site got quite too. It sometimes does that. It has..." + (show)
@windwalker

@anniepie Hi Annie! I noticed this site got quite too. It sometimes does that. It has a pattern like waves. Crests and troughs. How have you been doing?

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@windwalker Please keep safe -- thinking about you often Terri and hope you're okay

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @windwalker "Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like..." + (show)
@windwalker

Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like we could be a direct hit for hurricane Dorian. So far, the model has all of the same patterns as hurricane Mathew that freakishly turned and devastated Hilton Head Island several yrs ago. I live on the other side of the bridge that goes onto Hilton Head. At this point, it is hard to tell which direction to drive out of here to.

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@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @chinasmom "@windwalker , I'm praying for you and all affected by the hurricane. Praying for safe travels..." + (show)
@chinasmom

@windwalker , I'm praying for you and all affected by the hurricane. Praying for safe travels by those needing to get out of the way of this storm and for those unable to leave. Spare them all from the devistation of this hurricane. Show all of them the power of your love and shelter them in your arms. Amen
Becky Lyons

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

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @anniepie "@windwalker Please keep safe -- thinking about you often Terri and hope you're okay" + (show)
@anniepie

@windwalker Please keep safe -- thinking about you often Terri and hope you're okay

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I am praying for our Floridian neighbors. We have many group members down there. @alleycatkate, I hope you are in a safe place with all of your kitty cats. Good luck tomorrow. Hugs!

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1 reply
alleycatkate | @alleycatkate | Sep 2, 2019
In reply to @windwalker "I am praying for our Floridian neighbors. We have many group members down there. @alleycatkate, I..." + (show)
@windwalker

I am praying for our Floridian neighbors. We have many group members down there. @alleycatkate, I hope you are in a safe place with all of your kitty cats. Good luck tomorrow. Hugs!

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@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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