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.

nick52 | @nick52 | Oct 28, 2017
In reply to @maggiew "Good Day, my name is Maggie and 10 days ago I was admitted to the hospital..." + (show)
@maggiew

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

Jump to this post

Throat clearing info

https://www.fauquierent.net/throatclearing.htm
REPLY
nick52 | @nick52 | Oct 28, 2017
In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)
@jazzmindavis

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

Jump to this post

Video of déglutition

https://www.youtube.com/watch?v=wqMCzuIiPaM&sns=em
REPLY
nick52 | @nick52 | Oct 28, 2017
In reply to @maggiew "Good Day, my name is Maggie and 10 days ago I was admitted to the hospital..." + (show)
@maggiew

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

Jump to this post

Check video déglutition

https://www.google.ca/search?q=video+deglutition+video&ie=UTF-8&oe=UTF-8&hl=en-ca&client=safari
REPLY
nick52 | @nick52 | Oct 28, 2017
In reply to @maggiew "Apparently I was tested a few years ago, and that was OK. We talked through what..." + (show)
@maggiew

Apparently I was tested a few years ago, and that was OK. We talked through what some of my symptons should be if this was a problem, and I opted not to do it. (sadly, tired of tests..) He has no issue ordering the test, and after reading Nick's words, I might call and ask for it. This was my GP, who originally sent me to the hospital. I'm his first patient with MAI... I feel like I have a team though, so I'll also talk to my IFD & my pulmonary Dr about the test. Pneumonia is gone, I'm feeling better and exercising again. Was taking cefpodoxime and am glad to be off of that!

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Check the video exercises swallowing difficulties 

https://m.youtube.com/watch?v=ERQarqgyfOA
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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2017
In reply to @maggiew "Apparently I was tested a few years ago, and that was OK. We talked through what..." + (show)
@maggiew

Apparently I was tested a few years ago, and that was OK. We talked through what some of my symptons should be if this was a problem, and I opted not to do it. (sadly, tired of tests..) He has no issue ordering the test, and after reading Nick's words, I might call and ask for it. This was my GP, who originally sent me to the hospital. I'm his first patient with MAI... I feel like I have a team though, so I'll also talk to my IFD & my pulmonary Dr about the test. Pneumonia is gone, I'm feeling better and exercising again. Was taking cefpodoxime and am glad to be off of that!

Jump to this post

@maggiew, Hi Maggie. So glad that you are continuing to improve.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2017
In reply to @maggiew "Apparently I was tested a few years ago, and that was OK. We talked through what..." + (show)
@maggiew

Apparently I was tested a few years ago, and that was OK. We talked through what some of my symptons should be if this was a problem, and I opted not to do it. (sadly, tired of tests..) He has no issue ordering the test, and after reading Nick's words, I might call and ask for it. This was my GP, who originally sent me to the hospital. I'm his first patient with MAI... I feel like I have a team though, so I'll also talk to my IFD & my pulmonary Dr about the test. Pneumonia is gone, I'm feeling better and exercising again. Was taking cefpodoxime and am glad to be off of that!

Jump to this post

@nick52, Thank you Nicole. I will practice these exercises for swallowing. Good to know also, in case we need to help any of our family members with swallowing issues.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2017
In reply to @maggiew "Apparently I was tested a few years ago, and that was OK. We talked through what..." + (show)
@maggiew

Apparently I was tested a few years ago, and that was OK. We talked through what some of my symptons should be if this was a problem, and I opted not to do it. (sadly, tired of tests..) He has no issue ordering the test, and after reading Nick's words, I might call and ask for it. This was my GP, who originally sent me to the hospital. I'm his first patient with MAI... I feel like I have a team though, so I'll also talk to my IFD & my pulmonary Dr about the test. Pneumonia is gone, I'm feeling better and exercising again. Was taking cefpodoxime and am glad to be off of that!

Jump to this post

@nick52 Nicole, can you please explain the issue you have with radiation? Thanks!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2017
In reply to @maggiew "Good Day, my name is Maggie and 10 days ago I was admitted to the hospital..." + (show)
@maggiew

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

Jump to this post

@jkiemen, I agree with @boomerexpert . Find another doctor. Aspiration of food, drink, stomach acid, and saliva is a suspected cause of bronchiectasis and mycobacterium infections, especially MAC. Can also cause pneumonias. The Mayo did all kinds of diagnostic tests on me for swallowing. Discovered a hietal hernia and GERD.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2017
In reply to @maggiew "Good Day, my name is Maggie and 10 days ago I was admitted to the hospital..." + (show)
@maggiew

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

Jump to this post

@maggiew I looked up 'moraxella'. It is not so rare, what would be rare about it is if a totally healthy adult caught an infection from it. It is fairly common for people with COPD and bronchiectasis to contract this. It is the germ that causes pink eye in children and respiratory infection (pneumonia) in adults with illness and the elderly. It is commonly picked up in nursery schools and hospitals and is easily treated with just about any antibiotic. It is suseptible to most of them. The ones you are on; should take care of it. I am confused as to why you were put on the BIG 3 antibiotics if your bronchioscope came back negative for it. YOU MAY WANT TO SEEK A SECOND OPINION. From what I have read, you only need one antibiotic such as ciprofloxacin to get rid of the moraxella. The BIG 3 antibiotics are harsh and should only be used, according to many doctors from cutting edge institutions, if you have a full blown, colonizing case of MAC. About Katherine...... I wish you could have conversed with her here. She was an amazing person, I miss her so much. That is not a time that I get on this site and don't think of her. She not only inspired me to get well and stay well; but she also unintentionally helped me to be a better person. Stay with us, and we can walk this journey together. You posted this eight days ago, so I am hoping that each of those eight days found you feeling a little bit better with each one. Please keep us posted on how you are doing. Hugs!

REPLY
boomerexpert | @boomerexpert | Oct 30, 2017
In reply to @maggiew "Good Day, my name is Maggie and 10 days ago I was admitted to the hospital..." + (show)
@maggiew

Good Day, my name is Maggie and 10 days ago I was admitted to the hospital with pneumonia and discharged later with pneumonia, bronchiectasis and MAI. They have started me on the 'big 3'. So far I seem to be tolerating these OK as far as appetite, nausea and diarrhea. I see my GP this week. I am overwhelmed, but grateful to have found this group. I have only had one positive sputum test. I had a bronchoscopy, came up with a different rare bacteria (moraxella?), but again negative for MAI. This was my second case of pneumonia this year, so maybe that is why they opted to start the antibiotics. Sad to hear Katherine, someone I never knew or interacted with, passed away.

I am 59, about 15 pounds overweight (though losing weight this year) and was very active. This has kicked my butt. I have no idea where it came from. I live in upstate NY and work as a bookkeeper, with some public interaction. I want to get back to exercising, but need to recover from the pneumonia first. I also see a cardiologist later this month and will clear exercise with him.

Thanks for reading.

Jump to this post

@maggiew I agree w/Terri...get a second and even third opinion...being on any antibiotics let alone those associated with MAC when not necessary is dangerous.

REPLY
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