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.

heathert | @heathert | Jul 27, 2019
In reply to @sandykayhud "Hi: I have done 5 treatments with the Arikayce. I have completely lost my voice and..." + (show)
@sandykayhud

Hi: I have done 5 treatments with the Arikayce. I have completely lost my voice and can not speak above a whisper. My dr wants me to do the treatments in the morning. Did you discontinue the Arikayce for a period of time or did you keep taking it even during the time of your voice problems. I have not had any other major effects, some coughing and tinge of blood but nothing I can't deal with. I am not doing any other treatments except Breo inhalation. Thanks for any insight.

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Hi @sandykayhud , I had the same problem, I had a break for about 3 days, until I had a voice, and re started.I arkariced at night before bed and diddnt talk after, I rinsed my mouth out with water after the treatment and sucked on half a Strepfen, it worked wonders. Having no voice was very frustrating, I hope yours comes back soon.

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1 reply
anniepie | @anniepie | Aug 29, 2019
In reply to @heathert "Hi @sandykayhud , I had the same problem, I had a break for about 3 days,..." + (show)
@heathert

Hi @sandykayhud , I had the same problem, I had a break for about 3 days, until I had a voice, and re started.I arkariced at night before bed and diddnt talk after, I rinsed my mouth out with water after the treatment and sucked on half a Strepfen, it worked wonders. Having no voice was very frustrating, I hope yours comes back soon.

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@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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4 replies
fdixon63 | @fdixon63 | Aug 29, 2019
In reply to @anniepie "@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is..." + (show)
@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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I noticed it too. Maybe it is just an odd lull in messages.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 29, 2019
In reply to @anniepie "@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is..." + (show)
@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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Hi @anniepie @fdixon63 and all MAC members. Indeed there has been a lull in messages posted in the MAC group lately. That happens sometimes. I'd like to think that perhaps people are enjoying the waning months of summer outdoors or traveling, etc. Members like @windwalker @boomerexpert and others in Florida are certainly pre-occupied with Hurricane Dorian. We all hope they are taking precautions to stay safe.

Perhaps some of you would like to take a moment to browse through the discussions in the MAC forum and check in on fellow members. Here's the link to see all discussions: https://connect.mayoclinic.org/group/mac-bronchiectasis/

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boomerexpert | @boomerexpert | Aug 29, 2019
In reply to @fdixon63 "I noticed it too. Maybe it is just an odd lull in messages." + (show)
@fdixon63

I noticed it too. Maybe it is just an odd lull in messages.

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Guess we got all our questions answered... 😉 - back atcha @anniepie!

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heathert | @heathert | Aug 29, 2019
In reply to @anniepie "@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is..." + (show)
@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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Thanks @anniepie, it is usually a very busy site, Im sure everyone will return soon.

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1 reply
anniepie | @anniepie | Aug 31, 2019
In reply to @heathert "Thanks @anniepie, it is usually a very busy site, Im sure everyone will return soon." + (show)
@heathert

Thanks @anniepie, it is usually a very busy site, Im sure everyone will return soon.

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@heathert @boomerexpert @fdixon63 Thanks Colleen and everyone -- thinking of you all. And my thoughts are with people in Florida too. Annie

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 1, 2019
In reply to @anniepie "@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is..." + (show)
@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while -- unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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@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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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 1, 2019
In reply to @anniepie "@heathert @boomerexpert @fdixon63 Thanks Colleen and everyone -- thinking of you all. And my thoughts are..." + (show)
@anniepie

@heathert @boomerexpert @fdixon63 Thanks Colleen and everyone -- thinking of you all. And my thoughts are with people in Florida too. Annie

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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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5 replies
chinasmom | @chinasmom | 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 , 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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