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 5, 2019

sounder27 …… I understand. I'm 78 and have an in-home office. There are times I just hate to go to town because of the coughing. Then..... it may get better for a while. But I think it's important you see a Mayo doctor. They kind of work in small groups and confer about all of us. So we really have a consensus of opinion versus just one person. I just think you will be happy you went.

REPLY
2 replies
Helen L/Orlando | @hsletter | May 6, 2019
In reply to @sounder27 "To auntnanny. Yes I did sputum testing 3 years ago and was positive for Mac. I..." + (show)
@sounder27

To auntnanny. Yes I did sputum testing 3 years ago and was positive for Mac. I have not had any recent testing but am due for a cat scan in June. My last scan showed that the Mac was progressing. At first my cough was very non productive, but after this last bout of bronchitis in November it became more severe and I do cough up mucus. It is difficult at work. I have to tell all my customers that I’m not contagious. I design kitchens and usually sit with them for a couple of hours at a time. I have recently gone to part time hours due to how tired I am and how much I cough. I do have to work though, even at my age of 71. I will check with your doc’s office tomorrow to see if I can get an appointment.

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@sounder27. 72 and still an active realtor, albeit MAC slowing me down. Before meeting with clients, I take the Broncolin cough syrup recommended here. And have their cough drops on hand. Work splendidly!
Pulmonologist ordered tiny little perles of Tessalon which are helpful too.
Where do you live? I’m in Longwood just no of Orlando.

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1 reply
janovr | @janovr | May 6, 2019
In reply to @hsletter "@sounder27. 72 and still an active realtor, albeit MAC slowing me down. Before meeting with clients,..." + (show)
@hsletter

@sounder27. 72 and still an active realtor, albeit MAC slowing me down. Before meeting with clients, I take the Broncolin cough syrup recommended here. And have their cough drops on hand. Work splendidly!
Pulmonologist ordered tiny little perles of Tessalon which are helpful too.
Where do you live? I’m in Longwood just no of Orlando.

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Great products!
So glad I have them too!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2019
In reply to @auntnanny "sounder27 …… I understand. I'm 78 and have an in-home office. There are times I just..." + (show)
@auntnanny

sounder27 …… I understand. I'm 78 and have an in-home office. There are times I just hate to go to town because of the coughing. Then..... it may get better for a while. But I think it's important you see a Mayo doctor. They kind of work in small groups and confer about all of us. So we really have a consensus of opinion versus just one person. I just think you will be happy you went.

Jump to this post

@auntnanny ans @sounder27

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2019
In reply to @auntnanny "sounder27 …… I understand. I'm 78 and have an in-home office. There are times I just..." + (show)
@auntnanny

sounder27 …… I understand. I'm 78 and have an in-home office. There are times I just hate to go to town because of the coughing. Then..... it may get better for a while. But I think it's important you see a Mayo doctor. They kind of work in small groups and confer about all of us. So we really have a consensus of opinion versus just one person. I just think you will be happy you went.

Jump to this post

@auntnanny and @sounder27 Seeing Mayo team of drs is an excellent idea. That was great advise Jan.

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2019
In reply to @sounder27 "To auntnanny. Yes I did sputum testing 3 years ago and was positive for Mac. I..." + (show)
@sounder27

To auntnanny. Yes I did sputum testing 3 years ago and was positive for Mac. I have not had any recent testing but am due for a cat scan in June. My last scan showed that the Mac was progressing. At first my cough was very non productive, but after this last bout of bronchitis in November it became more severe and I do cough up mucus. It is difficult at work. I have to tell all my customers that I’m not contagious. I design kitchens and usually sit with them for a couple of hours at a time. I have recently gone to part time hours due to how tired I am and how much I cough. I do have to work though, even at my age of 71. I will check with your doc’s office tomorrow to see if I can get an appointment.

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@sounder27 That must be tough to still try to confer with clients while coughing and losing energy. You have my dream job by the way. I am a degreed interior designer but got too ill to keep working. I am doing much better now and consider going back into it part time. My brother has a remodel business and just did a spectacular kitchen in an old 1875 home in Richmond, Va. I hope you can get a grip on yoir cough and resume your work with more ease. If you lived near me, I'd help you with your business!

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2019
In reply to @nick52 "For some of you who has no result in stopping their cough with traditional medicine may..." + (show)
@nick52

For some of you who has no result in stopping their cough with traditional medicine may want to try herbal medicine like clear lungs. One effective therapy is CHINESE ACUPUNCTURE is very effective to help many lung problem. I found this effective CHINESE ACUPUNCTURIST in St Petersburgh Florida. Dr Su Liang Ku on the 2798 66th St. N. 727-541-2666 . This 77 years old man has 50 years in General/Family Practice Acupuncture, Tuina, Herbal Medicine etc. For those of you interested I guarantee you won’t regret it. He really knows what he is doing. His session cost 70$. Just wanted to share this possibility with you. Have a great week! We are going back to Canada Tuesday morning! Nic

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@nick52 Hi Nickcole! Good hearing from you. I'd love to go down to Fl. And visit your accupunturist. Great ones are hard to find. I saw two when I was traveling& one in N.Y. C. & one in Washington state. Both performed miracles. I regret that we did not get down to Fl to see you over the winter. Next winter FOR SURE!

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sounder27 | @sounder27 | May 8, 2019
In reply to @windwalker "@sounder27 That must be tough to still try to confer with clients while coughing and losing..." + (show)
@windwalker

@sounder27 That must be tough to still try to confer with clients while coughing and losing energy. You have my dream job by the way. I am a degreed interior designer but got too ill to keep working. I am doing much better now and consider going back into it part time. My brother has a remodel business and just did a spectacular kitchen in an old 1875 home in Richmond, Va. I hope you can get a grip on yoir cough and resume your work with more ease. If you lived near me, I'd help you with your business!

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Windwalker auntnanny. My doc talked to me today about an inhaled drug/ antibiotic called Arikayce. Have you heard of it? It is a liposomal form of the antibiotic Amikan. It targets MAC specifically and is a liposomal inhalation suspension. Side effects seem daunting however.

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1 reply
auntnanny | @auntnanny | May 8, 2019

sounder27 …… I've heard of it but know nothing about it. Please report back if you give it a try.

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1 reply
sounder27 | @sounder27 | May 8, 2019
In reply to @auntnanny "windwalker -- thank you for asking. I a, trying to do 30 days of toby right..." + (show)
@auntnanny

windwalker -- thank you for asking. I a, trying to do 30 days of toby right now. Just finished my second week. First attempt was not great -- I had trouble breathing and came off in 3 weeks. Waited about a month and want desperately to make it work. So, I'm trying again. There is some MAC in my sputum testing and Mayo doctor says if we can't stop some of the cough and phlegm with toby I may need to do the dreaded course of 3 antibiotics. I'm trying...…. I've lost a little weight and feel weak but at 78 years I assume I won't feel like a teenager. Incidentally, for other's info also, I got my first month's supply of toby at the Mayo pharmacy and they told me they were able to put it through on my Medicare B. It was cost-free to me. This time, I asked doctor to send script to my closer pharmacy -- Walgreens -- and they said they could not get it on Medicare B and they wanted 1100 dollars for a month's supply. I went back to Mayo Pharmacy and they sent it in cost free again. Don't know I this might help anyone but thought I would share the story. I'm happy to answer any questions I can if I can be of help to anyone. I'll be interested in whether your friend is still doing the bronchoscopies (sp).

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Auntnanny. Saw my doc today. Asked him about Toby and he said it was made to target pseudomonas rather than Mac. He gave me a pamphlet about an inhaled antibiotic called Arikayce, a liposomal form of the antibiotic amikacin. He is ordering me a bebulizer with saline and said to continue using the Resprivest morning and evening. This is time consuming when I need to be at work early in the morning. I have also ordered the broncolin/propolis cough syrup which is due to arrive in 2 days. I am to consider the risks of the Arikayce and let my doc know if I want to try it. It can cause allergic inflammation of the lungs and hemoptysis which can be “common” side effects.

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