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.

auntnanny | @auntnanny | May 10, 2019
In reply to @auntnanny "yayaaz..…… I would recommend calling the Mayo Pharmacies --- I'm sure they can do it. And,..." + (show)
@auntnanny

yayaaz..…… I would recommend calling the Mayo Pharmacies --- I'm sure they can do it. And, they will mail to your address.

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You can most likely get the pho numbers of the Mayo websites -- for all three locations. One is in Arizona. I use the one in Rochester

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1 reply
Ethan McConkey, Moderator | @ethanmcconkey | May 10, 2019
In reply to @yayaaz "Were you able to get Arikayce from your pharmacy? My aunt is having difficulty getting the..." + (show)
@yayaaz

Were you able to get Arikayce from your pharmacy? My aunt is having difficulty getting the drug. The 2 pharmacies close to don’t have it and can’t get it. She is 89, and can’t travel far to get the medication. Is it possible to order the drug through the pharmacy?
Thank you

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Hi @yayaaz, per @auntnanny's suggestion, here is a link to the Mayo Clinic Pharmacies page where you can find the contact information she was referencing: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/pharmacies

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1 reply
yayaaz | @yayaaz | May 10, 2019
In reply to @ethanmcconkey "Hi @yayaaz, per @auntnanny's suggestion, here is a link to the Mayo Clinic Pharmacies page where..." + (show)
@ethanmcconkey

Hi @yayaaz, per @auntnanny's suggestion, here is a link to the Mayo Clinic Pharmacies page where you can find the contact information she was referencing: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/pharmacies

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Thank you very much! As always, I can count on this forum to help me help my aunt!

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yayaaz | @yayaaz | May 10, 2019
In reply to @auntnanny "You can most likely get the pho numbers of the Mayo websites -- for all three..." + (show)
@auntnanny

You can most likely get the pho numbers of the Mayo websites -- for all three locations. One is in Arizona. I use the one in Rochester

Jump to this post

Thank you,
I feel foolish because it was so obvious and I didn’t think of it.

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sounder27 | @sounder27 | May 10, 2019
In reply to @yayaaz "Were you able to get Arikayce from your pharmacy? My aunt is having difficulty getting the..." + (show)
@yayaaz

Were you able to get Arikayce from your pharmacy? My aunt is having difficulty getting the drug. The 2 pharmacies close to don’t have it and can’t get it. She is 89, and can’t travel far to get the medication. Is it possible to order the drug through the pharmacy?
Thank you

Jump to this post

Yayazz. I just received a full pamphlet from my pulmonologist about Arikayce. It is used with a nebulizer system called Lamira Nebulizer System. At the start of treatment they send 2 shipments of a 28 day supply of Arikayce and the nebulizer. Going forward they send monthly shipments of the 28 day supply of the Aricayce. It has to come from a specialty pharmacy and you can go to ARICAYCE. com/ instructions to watch a step by step video on how to use the nebulizer. The drug is a liposomal suspension. It does have some noteworthy side effects and I would imagine that you have to be monitored quite closely while you are taking it. I hope this helped.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 12, 2019
In reply to @chinasmom "It has been a awhile since I posted anything but still reading all the emails from..." + (show)
@chinasmom

It has been a awhile since I posted anything but still reading all the emails from the sidelines. Wondering if anyone has used the mayo clinics genetic testing and was it helpful. I am thinking about getting one.
But Money is tight.

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@chinasmom Hello. I had a full panel of genetic testing done at Mayo in 2016 when they feared I may need a double lung transplant. They had to be sure I was totally healthy enough to go through with it. I was CF negative and cancer negative. l am not sure of all that I was tested for, but the tests did show every single thing I have been exposed to in my life due to the antibodies they found. I was surprised at some of the findings. For example, it showed I had been exposed to Hep C, yet I do not actually have it. I know who exposed it to me; my fiancée when I was 21. I also had Epstein Barr, which I never knew I had had mono. And a few other minor things. It was amazing to me that your entire health history can be traced with testing. Why are you interested in having a genetic work-up? Are you suspecting anything in particular?

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1 reply
chinasmom | @chinasmom | May 13, 2019
In reply to @windwalker "@chinasmom Hello. I had a full panel of genetic testing done at Mayo in 2016 when..." + (show)
@windwalker

@chinasmom Hello. I had a full panel of genetic testing done at Mayo in 2016 when they feared I may need a double lung transplant. They had to be sure I was totally healthy enough to go through with it. I was CF negative and cancer negative. l am not sure of all that I was tested for, but the tests did show every single thing I have been exposed to in my life due to the antibodies they found. I was surprised at some of the findings. For example, it showed I had been exposed to Hep C, yet I do not actually have it. I know who exposed it to me; my fiancée when I was 21. I also had Epstein Barr, which I never knew I had had mono. And a few other minor things. It was amazing to me that your entire health history can be traced with testing. Why are you interested in having a genetic work-up? Are you suspecting anything in particular?

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@windwalker , Thank you for getting back to me so quickly. The DNA Test is an at home one that is from mayo clinic and then sourced out. It was heavily advertised around last Christmas and again at Mother's Day. It was sent directly to my e-mail hence my resent curiosity of the test. It is not something the doctor would order you just buy it at the mayo clinic website for 149.00. I would do it if anyone else had good information from it. I have so many diseases that I'm surprised I don't syndrome after my name. I would welcome any new information thru reliable testing. So I am asking the group if anyone has used this and had received helpful information from it. Thank you so much for your tireless devotion to our group. You really stepped up after we lost our group leader. You are loved and appreciated ♡♡♡
Becky

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 13, 2019

@chinasmom, Awe...thank you Becky. I have to say, I love my members right back. Although not funny, I did giggle when you stated you should have the word 'syndrome' following your full name. LOL. It is good to have a sense of humor through all of this. Unfortunately, our disease can come with a number of comorbid diseases;sister diseases that go hand-in-hand with bronchiectasis, or gerd, or mac. Oftentimes it is autoimmune diseases like rheumatic arthritis, lupus, etc. I'd be curious to hear what you learn from your genetic testing. I hope you will share your results.

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chinasmom | @chinasmom | May 13, 2019

I can't tell if pictures came through of my email or not

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 13, 2019
In reply to @chinasmom "I can't tell if pictures came through of my email or not" + (show)
@chinasmom

I can't tell if pictures came through of my email or not

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@chinasmom I don't see them, unless you are talking about your profile picture. Is that new?

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