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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)
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@barbjh

Hello, I am new to this but was diagnosed this last summer with the MAC infection, they found nodules in my lungs that were consistent with an atypical infection. After final getting a sputum sample it grew staph and MAC infection. I was feeling wiped out all the time and losing weight. I cough sometimes but not a lot at this time. I live in MN and saw doctors in Minneapolis and after reading information I decided to go to the Mayo clinic.
Katherine you were right about Timothy Aksamit. He seems very knowledgeable and trust him completely. I am so lucky to have the Mayo clinic so close by. They are amazing.
We are holding off the drug treatment for now....but it may be in my future.
I just turned 60 years old and am single so the idea of this wearing me down is kind of depressing. This is the biggest hurdle for me.
That is why this forum is a great idea. Not many people know about MAC. I just saw my dermatologist and she actually knew all about, that surprised me.
I will write more later, tonight I am dragging.

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Replies to "Hello, I am new to this but was diagnosed this last summer with the MAC infection,..."
johnlk | @johnlk | Apr 12, 2016

I HAVE HAD MAC FOR TWO YEARS OR MORE<br />
<br />
SINCE I DECIDED IT WAS NO BIG DEAL WITH ME I AM DOING VERY WELL<br />
<br />
AS I AM 86 YEARS OLD I DECIDED AGAINST ANTIBIOTIC TREATEMENT<br />
<br />
MY SPECIALIST THINKS THAT IS AN OK IDEA AND WILL MONITOR MY XRAY EVERY 6<br />
MONTHS<br />
<br />
SO THE BIG THING AS I SEE IT IS TO DECIDE THAT I AM JUST FINE EACH DAY AND<br />
LIVE A HEALTHY AND ACTIVE LIFE AS BEFITTING MY AGE<br />
<br />
I AM ALLREADY ON 4 RX EACH DAY FOR HEART AND OTHER CONDITIONS AND THAT IS<br />
ENOUGH OF THAT STUFF<br />
<br />
WORKS FOR ME<br />
<br />
JOHN KITE BC CANADA<br />

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janovr | @janovr | Apr 12, 2016

YAY FOR YOU! I feel the same way! Tried them twice, ended up in the hospital both times!<br />
Blessings !<br />
<br />

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Katherine, Alumni Mentor | @katemn | Apr 17, 2016

Hello Barb, SO glad you got into Dr. Aksamit .. he is just wonderful! You can just totally trust him to tell you when/if you should start the drug therapy. Don't be afraid of it .. read the various threads .. you will see mine. You will see that I foolishly held off the therapy because I believed all the "stuff" about the side affects and thought that surely I would get them all! Nope! Each body and individual are so different .. in retrospect I did so well. Sure it was not a piece of cake .. I had to sleep 10 hours a night and lost weight .. had sleep disturbances .. BUT I am now in remission.

Just go with the flow .. being single .. depend on the people who care about you .. don't pretend to be brave all the time .. let people in .. let people take care of you emotionally. Stay on this forum .. good people here .. we are all on the same journey! Sending you a hug!

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