(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.

heathert | @heathert | Aug 23, 2016

In reply to @katemn "Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit ....." + (show)

@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

Jump to this post

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!

Katherine, Alumni Mentor | @katemn | Aug 23, 2016

In reply to @katemn "Hello 3451, no my skin did not turn bronze .. that might have been an advantage..." + (show)

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

Katherine, Alumni Mentor | @katemn | Aug 23, 2016

In reply to @katemn "Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit ....." + (show)

@katemn

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 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.

Sending you Hugs, Katherine

Jump to this post

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

Flib | @flib | Aug 23, 2016

In reply to @cacallahan "Hi. This is only my 2nd time writing on this site. I have been diagnosed with..." + (show)

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

Paula_MAC-2007 | @Paula_MAC2007 | Aug 23, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

@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

Flib | @flib | Aug 23, 2016

Terri, thank you for this very good advice. Flib

tdrell | @tdrell | Aug 23, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

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

boomerexpert | @boomerexpert | Aug 24, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

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

Paula_MAC-2007 | @Paula_MAC2007 | Aug 24, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

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

Kay Strand | @kaystrand | Aug 24, 2016

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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