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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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@windwalker, Terri and @jentaylor .. Knock it off! Who cares where we got these lousy things .. WE "GOT" THEM!! So NOW let's just put our focus and energy into healing .. living well .. happiness .. serenity. In other words .. putting our energy into what we CAN control .. and letting go of what we CANNOT control! How those darn things got into our lungs! SOMEDAY they are probably going to figure out it is a combination of genetics .. environmental .. immune systems . . AND who knows what! As I was told when I was diagnosed .. a couple can shower together .. travel together .. garden together for TWENTY years! One person will get MAC/???? .. the other person in the couple will not. They do NOT know why! So WE must focus on the positive .. WHAT we can control .. our current lives and being as healthy and happy as we possibly can! Are you with me on focusing on what we can control? Hugs to you both! Katherine
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1 ReactionThat's right! This is an OPPORTUNISTIC disease, If the circumstances are right, one can become infected. You can get it anywhere! I could have gotten it from dirty stages, polluted abandoned airport, turkish baths in Turkey!! hot tubs, etc. My sister in law just got diagnosed with it, possibly from gardening. Her doctor said he used to see a case of MAC once every couple months, but now a few cases a week!! It is on the rise. Probably, more people, more crowded conditions, more pollutants in atmosphere... many reasons for this disease. The more people that get it, the better for us because the drug companies will look for a cure if they sense $$$ to be made!
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1 ReactionAI am really learning allot from everyone. If you cannot produce any sputum, and I also was not able to produce sputum with the 10% Saline induction, has anyone
had to have a bronchoscopy to get sputum. I asked my MD and he said well it will just grow more MAC I we already know you have that. Isn’t the sputum also supposed to tell you if there is a subspecies that would be more susceptible to one of the antibiotics
over another? I also was wondering about this concept. If nurses or teachers seem to get this allot, could it be that maybe during our day we did not drink enough liquid making lung secretions thicker and getting MAC stuck down there?
JO Aann
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1 ReactionHere's a thought: as teachers and nurses and other helping professionals, we all tend to be that special caring breed of people. Perhaps we have an invisible "welcome" sign on our chests. We used to live in an area where people randomly dropped off unwanted pets at our house, and lost people came to our home for directions. They never went to other neighbors! Maybe MAC is like that. Katherine is right . Even though it might drive us crazy - the not knowing, it really doesn't matter in the big picture. Anyway I was /am the non sputum gal. My MAC was diagnosed on a CT scan and confirmed via bronchoscopy. I was losing weight just breathing and exhausted for no reason so my OBGYN who is my brother in law ordered the CT scan! My husband with sarcoidosis brings up enough sputum for both of us. After that it was infectious disease, and the pills. I have had to be changed from clarithromycin to the azithromycin due to side effects from the first one. Apparently that happens sometimes. Most of us have had eye tests, hearing tests, and monthly blood work as our livers can become unhappy.
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2 ReactionsWow didnt think of that!
@jkiemen Jo Ann, part of doing your "Due Diligence" and gaining knowledge about our shared disease is educating yourself .. see the below .. hope you find it helpful. re: the bronchoscopy. Jo Ann, I question just how well your doctor is answering your questions!
ie " I asked my MD and he said well it will just grow more MAC I we already know you have that. Isn’t the sputum also supposed to tell you if there is a subspecies that would be more susceptible to one of the antibiotics." Jo Ann, "It" does NOT GROW MORE MAC! The "wash" will merely show the MAC! BUT it will NOT SHOW the susceptibility to antibiotics .. THAT requires "Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. " Jo Anne, Do your "Due Diligence" .. SO YOU can become your OWN best advocate when conversing with your doctor! Hugs! Katherine
From My File Cabinet:
BRONCHOSCOPY Results of bronchial "washing make possible a diagnosis of MAC pulmonary disease." https://www.ncbi.nlm.nih.gov/pubmed/11402614
USUALLY DONE IN CONJUNCTION WITH:
TESTING RECOMMENDED FOR ANTIBIOTICS:
IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.
Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf
Dear All, maybe this is against the rules .. BUT I just got this from a friend in Australia .. thought it was so uplifting I thought I'd share it .. if I get reprimanded .. promise not to do it again! Hugs to all!
THE BACK NINE
I FIRST STARTED READING THIS EMAIL & WAS READING FAST UNTIL I REACHED THE THIRD SENTENCE. I STOPPED AND STARTED OVER READING SLOWER AND THINKING ABOUT EVERY WORD. THIS EMAIL IS VERY THOUGHT PROVOKING. MAKES YOU STOP AND THINK.
READ SLOWLY!
AND THEN IT IS WINTER
You know ... Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.
But, here it is... The back nine of my life and it catches me by surprise...How did I get here so fast? Where did the years go and where did my youth go?
I remember well seeing older people through the years and thinking that those older people were years away from me and that I was only on the first hole and the back nine was so far off that I could not fathom it or imagine fully what it would be like.
But, here it is...my friends are retired and getting grey...they move slower and I see an older person now. Some are in better and some worse shape than me...but, I see the great change....Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd become.
Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit!
And so...now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though I'm on the back nine, and I'm not sure how long it will last...this I know, that when it's over on this earth...it's over. A new adventure will begin! Yes, I have regrets. There are things I wish I hadn't done...things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime.
NOTE: So, if you're not on the back nine yet...let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don't put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether you're on the back nine or not!
You have no promise that you will see all the seasons of your life....so, live for today and say all the things that you want your loved ones to remember...and hope that they appreciate and love you for all the things that you have done for them in all the years past!!
"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one. LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY ! HAVE A GREAT DAY Remember "It is health that is real wealth and not pieces of gold and silver.
LASTLY, CONSIDER THIS:
~Your kids are becoming you......but your grandchildren are perfect!
~Going out is good.. Coming home is better!
~You forget names.... But it's OK because some people forgot they even knew you!!!
~You realize you're never going to be really good at anything like golf.
~The things you used to care to do, you aren't as interested in anymore, but you really don't care that you aren't as interested.
~You sleep better on a lounge chair with the TV 'ON' than in bed. It's called "pre-sleep".
~You miss the days when everything worked with just an "ON" and "OFF" switch..
~You tend to use more 4 letter words ... "what?"..."when?"... ???
~You notice everything they sell in stores is "sleeveless"?!!!
~What used to be freckles are now liver spots.
~Everybody whispers.
~You have 3 sizes of clothes in your closet.... 2 of which you will never wear.
~~~But Old is good in some things: Old Songs, Old movies, and best of all, OLD FRIENDS!!
Stay well, "OLD FRIEND!" Send this on to other "Old Friends!" and let them laugh in AGREEMENT!!! It's Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived.
TODAY IS THE OLDEST YOU'VE EVER BEEN; YET THE YOUNGEST YOU'LL EVER BE, SO ENJOY THIS DAY WHILE IT LASTS
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4 ReactionsBeautiful❤️
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1 Reaction@katemn Katherine,
I don't see where this would get you into trouble, it is sage advice. My aunt
gave this same advice when I was 20. I heeded it for the most part. Having been
sick most of my adult life kept me from the world travel that I had planned to
do. I did manage to get to a few places. Now, I have time and money to go, but
no energy, and fear of weird germs. My friend just came back from Mazatlan and
got Montezuma's Revenge. To be honest, I have feathered my nest quite nicely and
prefer my creature comforts. Funny you should post this right now, because I
have been wrestling with whether or not to make a move. I want more time with my
daughter. She is the only child I have. I dream about having her over for dinner
and going shopping together. Thank you for the reminder K. Hugs -
Terri M.
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1 ReactionNo rules broken, @katemn. I'm cutting and pasting into an email to share with others who will appreciate it. Thanks for sharing.
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