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!

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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 | Jun 3, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@alleycatkate Ha! I am enjoying the mental picture of your cats trying to frantically climb the walls aroumd your tub, and your shower curtain hanging in ribbons! I live 2 1/2 hrs north of the Mayo. It is an easy drive down there. BTW, salt air is great for the lungs. It's salt, just lile the nebulized saline some of us do. What is the name of the beach you walk at?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 3, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 Suzie, if the misinex is working, just stay with it. He might also enjoy Breath Easy tea. It gets rid of the tight feeling around the chest. It gets the elephant off your chest. I am referencing that commercial on t.v. that shows an elephant sitting on someone. It is an add for asthma medication.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 3, 2018
In reply to @hallann "Would appreciate any information on this mac lung disease was just told I have it scared..." + (show)
@hallann

Would appreciate any information on this mac lung disease was just told I have it scared of what I have read

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Hi @nick52 I can edit your post for you if you like. Here it is https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=407#comment-105267

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Suzie2017 | @suzie2017 | Jun 3, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

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It is very possible that he has a hernia. He was x-rayed several months ago and only arthritis showed up. The doctors are mystified about the pain and that it goes around to his back. The pain comes and goes and it only comes at night. He has not had the pain for about 4 nights now. It is very strange.

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Flib | @flib | Jun 4, 2018
In reply to @jspremich "I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not..." + (show)
@jspremich

I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not good enough. Out of the ten antibiotics that were capable of working wonders on my bacteria, only 2 would be effective and only 50% of the time. Lucky me. Fortunately, my infectious disease (one retired and another took over) specialists, both discouraged me with starting the cocktail of drugs. They advised me to stay clear, because of obvious side effects, of the medicine as long as I was feeling o.k. Over the years the symptoms would come and go. For the last 6-7 months, I have (knock on wood or maybe gold) had minor flare-ups. For whatever it's worth (And I'm not claiming anything here), I'm a vegetarian and have been for 45years. (I'm 81)
MAC periodically reminds me that its still there, waiting to strike at any moment.

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I also am 81 and a vegetarian for 55 years. Only on med worked with my bacteria. I took it for abut 6 months then had to get off it as the side effect was loss of hearing in my left ear. I've been diagnosed with Mac and bronc for 8 years, likely had it for some time prior to the diagnoses. I'd say I had good quality of life for the first 5 of the 8 years. Now, I have extreme fatigue many days, can't do much. But even on the bad days I am functioning. I've picked up a lot of info about boosting my energy on this site, especially from Terri who is some kind of saint. . .

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 2018
In reply to @jspremich "I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not..." + (show)
@jspremich

I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not good enough. Out of the ten antibiotics that were capable of working wonders on my bacteria, only 2 would be effective and only 50% of the time. Lucky me. Fortunately, my infectious disease (one retired and another took over) specialists, both discouraged me with starting the cocktail of drugs. They advised me to stay clear, because of obvious side effects, of the medicine as long as I was feeling o.k. Over the years the symptoms would come and go. For the last 6-7 months, I have (knock on wood or maybe gold) had minor flare-ups. For whatever it's worth (And I'm not claiming anything here), I'm a vegetarian and have been for 45years. (I'm 81)
MAC periodically reminds me that its still there, waiting to strike at any moment.

Jump to this post

@flib You give me way too much credit! By the way, I went vegetarian last week. I am trying to avoid acid producing foods. I have litmus testing strips and my ph is off the charts acidic. My tongue always burns. Since I quit the meat and alcohol, my tongue stopped burning. I had coffee this a.m. (acid producer) and the burning returned. I love my caffien in the a.m. and it is a tough one to give up. Will try weining off. I am having tofu stir fry tonight. Do you have any tips for vegetarian diet? What do you eat for breakfast?

REPLY
Flib | @flib | Jun 4, 2018
In reply to @jspremich "I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not..." + (show)
@jspremich

I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not good enough. Out of the ten antibiotics that were capable of working wonders on my bacteria, only 2 would be effective and only 50% of the time. Lucky me. Fortunately, my infectious disease (one retired and another took over) specialists, both discouraged me with starting the cocktail of drugs. They advised me to stay clear, because of obvious side effects, of the medicine as long as I was feeling o.k. Over the years the symptoms would come and go. For the last 6-7 months, I have (knock on wood or maybe gold) had minor flare-ups. For whatever it's worth (And I'm not claiming anything here), I'm a vegetarian and have been for 45years. (I'm 81)
MAC periodically reminds me that its still there, waiting to strike at any moment.

Jump to this post

I'm not vegan so I eat eggs in the morning. Unfortunately, I'm also not much of a cook. Last night for dinner I had a chopped salad, avocado dip and taco chips and a cup of soup. I'm always on the look out for good soups as it is the easiest thing for me to eat and digest. I gave up coffee a year ago and only have one cup of tea in the morning. Rather boring. There are loads of good recipes out there if you're into cooking bu I've always been the cook who throws away dirty pots...no talent in the kitchen. I do make smoothies and get lots of fruit that way. I like flaxseed millk. Sounds awful but I think it taste more like milk than almond milk. Great on oatmeal etc. Besides my lousy lungs I have no other serious health problems; joints are good, mind is sharp heart is fine. I gave up meat long ago because I love animals and hate cruelty. I think it's a healthy decision...not easy so I'm wishing you the best of luck. I had acid reflux but eliminated acid foods...good-by tomatoes and orange juice...and I'm OK., not on meds for it.

REPLY
boomerexpert | @boomerexpert | Jun 4, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

@suzie2017 no wonder if they're going by only an xray...he needs a CAT scan or MRI

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 2018
In reply to @jspremich "I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not..." + (show)
@jspremich

I was diagnosed with MAC and another bacteria over two years ago. Apparently, one is not good enough. Out of the ten antibiotics that were capable of working wonders on my bacteria, only 2 would be effective and only 50% of the time. Lucky me. Fortunately, my infectious disease (one retired and another took over) specialists, both discouraged me with starting the cocktail of drugs. They advised me to stay clear, because of obvious side effects, of the medicine as long as I was feeling o.k. Over the years the symptoms would come and go. For the last 6-7 months, I have (knock on wood or maybe gold) had minor flare-ups. For whatever it's worth (And I'm not claiming anything here), I'm a vegetarian and have been for 45years. (I'm 81)
MAC periodically reminds me that its still there, waiting to strike at any moment.

Jump to this post

@flib The rest of you is probably in great shape because you have been a vegetarian for so long. I am not doing a vegetarian diet as much as an acid free diet. Eggs are supposedly acid producing so I can't eat those. I don't know if my change in diet will help or not. I am just tired of my tongue burning so bad. It is very annoying.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jump to this post

@lindam272 Thank you for posting this Linda!

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