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 30, 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

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@nick52, Thank you, I will!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 30, 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?

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@nick52, Hey Nicole, how did it go today at the specialist?

REPLY
nick52 | @nick52 | Oct 30, 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

Pfists, i don’t know if you got my message “ how rhe test is done” but the test is call video deglutition and you can see how the test is done on google. The gave you different texture like cookie with barium, pablum with barium , apple sauce with barium, juice with barium, thick liquid with barium and the x ray is on the left side (here) like a video and the radiologist can see how the swallowing is functionning. If you hav aspiration they will see it. It is the only test that can confirm “aspiration”. Is this clear enough for you. If you have a question do not hesitate to make your request.

REPLY
nick52 | @nick52 | Oct 30, 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.

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I forgot to tell you that I ask the radiologist and my infectiologue about aspiring acid reflux to the lung and he said yes. Aspiration is the cause of bronchiectasis. I had read that but no one had confirm it but the radiologist did. If you eat mucus forming food you will have more expose or have more chances to pneumonia my dctor said. If you have a lot of reflux have you ever consider having NAET treatment. Those treatment are amazing Windwalker. I will give you an exemple of one of my treatment. I couldn’t eat butter anymore because I was getting to much mucus reflux and sputum so I switch to coconut oil, when I went for my allergy test I score 10 on butter (at 4 it is considered severe) yes 10! I had the treatment and now butter doesn’t affect me at all. The beauty of the treatment is you don’t need to stop eating it. I am looking forward to meet you when I get to Florida.

REPLY
nick52 | @nick52 | Oct 30, 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.

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I hav never taken antibiotics for the MAC

REPLY
nick52 | @nick52 | Oct 30, 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?

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Dear Windwalker,

Today I met the orthophonist who is the specialist for swallow abnormalities.  On the xrays they could see both tube the one that goes into the stomack and the one into my lungs. She said they were able to see the clear liquid going down a bit in the lung

tube before the swallowing process has done its job.  So to prevent liquid to get into the lungs I will have to thicken my clear liquid because this is the problem (clear liquid not thick) so I have to thicken at the NECTAR LEVEL which mean a bit thick like

a Yop (liquid yogourt). The thickener is called ThickenUp (clear) it work really well and doesn’t change the taste of whatever I drink. I need to be careful eating a balance acid alkaline food to keep the ph balanced.  The weakness is at the back of my tongue

on the right so I can do exercices as seen on the video I have posted on this site on SWALLOWING EXERCICES.  The ThickenUp is a must not to aspirate my liquid. 

I also have to have an MRI of the brain because aspiration can be caused by a neurology problem.  In my case the doctor radiologist think it is due to my TMJ surgery in 1985 in Quebec or 1986 in Portland Maine. In 1986 they had to cut the outside of my throat

to prevent infections. 

 So we need to check if it is neurology or the surgery.   I will keep you posted.  

To me it make a lot of sense because of all the problem I had since that surgery.

REPLY
nick52 | @nick52 | Oct 30, 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

Windwalker, if you email me at nickyves52@hotmail.com I will send you a photo of the ThickenUp because there is 2 kind that I saw at the pharmacy today.

REPLY
nick52 | @nick52 | Oct 30, 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

Sorry it is nicyves52@hotmail.com. (No k)

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 2, 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

@nick52, Wow, Nicole! This is all incredibly interesting. Swallowing issues adds another facet to the causes of lung diseases, especially bronchiectasis. Thank you for sharing this with the group. This may be a topic for some on this thread to ask their doctors about; particularly those with reoccurring lung infections. how often do you do your exercises?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 2, 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 All interesting info. Yes, I look forward to meeting you too some day as well.

REPLY
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