(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.

@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar .... we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

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keep it coming@justjanet its making me hungry which is a good thing! Ice cream definitly works, my hubby was addicted to it , a large plate a night,and when he stopped he lost 6 kilos!

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@katemn

Hello 3451, no my skin did not turn bronze .. that might have been an advantage to this boring pale faced person .. BUT I was warned that my urine would have a golden cast .. which it certainly did!
In terms of the antibiotics .. keep in mind that each of us have INDIVIDUAL diagnosis! My diagnosis INCLUDED in addition to the MAI/MAC a SECOND mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES which is difficult to treat!

I started 10/11: Ethambutol 800mg/ Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week(5xwk until 10/12) I was taken off Ethambutol 800mg 02/12 when I began to lose color and distance vision. It took about a year but I got back nearly 100% of the vision back because I had a wonderful Ophthalmologist who caught it early! How I realized the loss was that we were on a road trip .. I realized I could not read the green street or overhead freeway signs as quickly as my husband when we “tested” my vision. I immediately made an appointment. She took me off the Ethambutol 800mg as a probable cause and as I said .. it took about a year .. but my color and distance vision did return .. for which I was very grateful.

KEEP IN MIND .. because it happened to me .. DOES NOT mean it will happen to you! Each of our bodies are different and we will react differently .. like beautiful snowflakes .. we are uniquely different .. that is the beauty of our lives! Go in serenity!

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Hey heathert! With those darn critters in us .. we need to find some fun in this process! Whatever it takes .. we will do it .. with a chuckle along the way! Sending you a hug! Katherine

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@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar .... we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

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Love ya Janet! We are indeed partners in crime! Katherine

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@cacallahan

Hi. This is only my 2nd time writing on this site. I have been diagnosed with MAC about a month ago, and now see a pulmonologist & a infectious disease Dr. I start my cocktail of meds on 5-2-16. Actually, I should have started them this week, but I am having such panic attacks that I am waiting until Monday, I am sooo scared. I am a caregiver to my elderly parents who are sick and an adult (34) yr old son who is handicap. I am afraid I will be too sick to take care of them. I have never been this scared in my life. I have decided if the meds, all 4 to start with make me to ill, I am going to stop taking them. I can't imagine being so sick for the next 18 months. I think I would rather die. I am just a mess and cry constantly. Ok, I won't bring my problems to this anymore. I just needed to get this off my chest. SCARED!!!!!

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Janet. Very generous of you. I will check out the list.

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@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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@tdrell, just an update ...
The two days (Thursday & Friday, September 15th & 16th, 2016) before your conference on Sept 17th, there is a conference at the same location for health care professionals who diagnose and treat patients with Nontuberculous Mycobacteria (NTM). Here's the link
https://www.nationaljewish.org/Calendar/2016/2016-NTM-Providers
So lots of information going around!
Paula

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Terri, thank you for this very good advice. Flib<br><br> <br><br> <br><br> <br> <br><br>

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@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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Boomerexpert...are there specific questions you would like me to ask at the conference if time and format allow?

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@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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Yes, Terri. What can we patients do to help persuade funders to do the<br>research needed to find better treatments than the decades old one's<br>currently in use.<br><br>Thanks!<br><br>Terri

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@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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@tdrell and @boomerexpert - I'd like to see new drug(s) for NTM that can be inhaled right into the lungs!

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Re the conference.

Perhaps we need some statistical data gathered to try to help understand why some people get MAC and most don't. There must be more commonalities to all of this that is being missed. If we knew the cause, perhaps a better cure would become more apparent. Perhaps reoccurance could be stopped.

We are getting the same drugs they've been using to treat NTMs for years with no advances. There is no critical mass to our numbers, and so no money in trying to figure this out.
I think a better look at the possibity of "hidden" MAC, all the folks walking around with a cough, tired, not yet diagnosed. Also, they talk 8% growth rate. As our population ages with the boomers, is this growth rate perhaps much higher?

What about surgery. It's seems to be a pretty sure cure. Why isn't more done? Maybe too expensive or only allowed if drugs fail? There are some people on here MAC free for a few years, but let's face it, with drugs only it frequently comes back. Surgery seems to be an endgame for the disease. I'd like to get rid of this for my future years, not live on drugs that have many side effects long and short term.

It seems someone must be asking these questions and gathering info for the conference, but perhaps not. I cannot go due to a previous trip plan.

I'm sure someone going to the conference with MAC can better formulate these ideas.

Thanks. Comments and additions welcome.

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