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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 27, 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

@nick52 , Thank you, I will look into getting this test as I have trouble swallowing. I had my throat widened year before last and was told I may need it done annually. I can tell that it is time for that again because my food collects at the bottom of my throat and hurts. It is that same feeling that you get when you've swallowed a pill without enough water, and it sticks there and is painful.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 27, 2017
In reply to @suenfl "I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery..." + (show)
@suenfl

I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital... same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.

Jump to this post

@nick52, Hi Nicole! That is excellent advice. I have been trying to adhere to an alkaline diet myself. It is hard because my husband loves his meats and ice-cream; therefore those are always in the house. I can tell that my body's ph is too acidic; my tongue burns most of the time, along with other indicators. I use the acid test strips also. For those of you who do not know much about this, you can Google the subject and learn more. Some diseases are caused by, or become worse due a high acid diet. Some high acid ph in the body can be caused by the disease and also by medications.

REPLY
Jo Ann K | @jkiemen | Oct 27, 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

 

I agree with the swallowing issue. Everytime I bring it up at my appointments, I am brushed off.

Jo Ann K

 

REPLY
nick52 | @nick52 | Oct 27, 2017
In reply to @windwalker "@nick52 , Hi there! I did check out the video, thank you for posting that, it..." + (show)
@windwalker

@nick52 , Hi there! I did check out the video, thank you for posting that, it is good information. My daughter is 30 yrs old and has trouble swallowing. I want her tested before her lungs get ruined. By the way, how are you doing these days?

Jump to this post

Dear Maggie and Windwalker

I was so privilege to be able to talk to the radiologist. He said to me nick52 that Dr Ubla radiologist that aspiration of the liquid is the cause of my bronchiestasis. Video déglutition X-ray is not recommended by doctor and wonder if they know it exist

lol. After viewing the video déglutition watch the video ASPHAGIA you will get a lot of information you won’t believe. I found my mucus problem. Related to aspiration and in my case it is the SILENT type. So that means you are not aware you have an aspiration

problem.  I am telling you, you might find a lot of info about the symptoms  you have. The problem is the bronchiestasis who is responsable for catching bacteria. I am meeting the specialist on Monday for my aspiration problem.

REPLY
nick52 | @nick52 | Oct 27, 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

Jo Ann I know the feeling ! You got to I insist to have it done. Give him the guilt trip by asking him how he would feel if you get a bad pneumonia or have lung cancer .  If you are aware of the cause you can be more more careful to protect your lungs.  

REPLY
nick52 | @nick52 | Oct 27, 2017
In reply to @suenfl "I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery..." + (show)
@suenfl

I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital... same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.

Jump to this post

Windwalker 

You too have a burning tongue.  Every time I eat ice cream or readmeat my tongue burns also. If you have an acid stomach it is dangerous to aspiration the acid reflux on your lung and have a lung disease.  I also read that you can also have reflux on a

non acid stomach.  Google Dysphagia .  You will find all kind of info also exercises to do if you do aspiration.  Only one more month and i will be in Florida.

REPLY
nick52 | @nick52 | Oct 27, 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

Dear Windwalker

The pill feeling affect is call globus throat check this on google

REPLY
maggiew | @maggiew | Oct 28, 2017

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!

REPLY
5 replies
boomerexpert | @boomerexpert | 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

Then you need to find another doctor...

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!

Jump to this post

Dear Maggie,

It is a very simple test.  Not complicated at all.  Ask the orthophoniste when she will talk to you with a questionnaire before the test.  Ask her if the radiologist will assist during the test if she says no insist to have him there. There is radiation

in the X-ray but it is worth the test. I had an NAET treatment this Friday and radiation was an issue that I had treated.  I had real good result with it since July so I now believe in it.  I wish we could all meet together.  We all have our experience and

we could help each other. Write video déglutition video on google. I will check if I can post it on this group conversation.

REPLY
View MoreView Less
Please sign in or register to post a reply.