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Discussion(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Replies to "It's been a while since I've posted. Your help was most important to me while my..."
HI COLLEEN, MY NAME IS TONI ANN AND I HAVE MAC ,PLUS AN INTERSTITAL LUNG DISEASE SEPERATE FROM MAC I WAS EXPOSED TO THETOXIC CHEMICAL PERC FOR DRY CLEANING CLOTHES .MY HUSBAND AND I WERE IN BUISNESS OVER 40YRS WITH 9 FULL OPERATING STORES ALL USING PERC THAT OSAHA APPROVED UNDER FED. LAW. YOU NEVER KNOW WHAT DANGER IS AROUND YOU .MY QUESTION IS CAN MAC GO INTO TUBERCULOSIS.ONE DOCTOR TOLD ME, NOT LIKELY AND MAYBE NO ANOTHER SAID' WE ARE STILL LEARNNIG THE DAMAGE THIS MONSTER CAN DO AND I'M NOT RULING IT OUT' I'M NEW ON THIS SITE,AND IT HAS BEEN THE MOST HELPFUL , BECAUSE OF EACH OF YOU SHARING YOUR LIFE WITH OTHERS. I'VE BE ALONE IN THIS MESS ,OTHER THEN MEDICAL PEOPLE AND NONE AS FOR AS I KNOW HAVE MAC OR ANY OTHER LIFE TAKEN LUNG DISEAES. SO AGAIN' THANK YOU SO MUCH . I NOW HAVE FRIENDS IN MY WORLD TONI ANN IN LOUISIANA
Welcome to Connect, @toni68. To my understanding, MAC cannot "turn into" or cause tuberculosis. MAC is part of a group of bacteria known as nontuberculous mycobacteria (NTM). @windwalker, @tdrell, and @irene5 may have more to add.
Toni, I'm glad you found the MAC group here on Connect, and that you now have others you can talk to about living with MAC. Are you currently taking antibiotic treatment?
HI COLLEEN , I'M NOT TAKING ANTIBIOTIC BESIDES MAC I HAVE ADVANCE SJOGREN'S AND INTERSTITIALPULMONARY FIBROSIS AND ANGINA PECTORIS AND PROBLEMS WITH THE VIENS IN MY HEART I NEED SURGERY SOON. I HAVE NERVE DAMAGE IN MY STOMACH.I HAD COLON CANCER SEVERAL YEARS AGO SO I'M ON MY OWN NOT VERY MUCH MEDS I CAN TAKE IT'S JUST GETTING HARDER TO DEAL WITH. IT'S SO NICE TO BE A PART OF ALL OF YOU. YOUR KIND ENOUGH TO SHARE YOUR PAIN WITH PEOPLE LIKE ME,THAT ARE IN THE BLIND ABOUT MOST INFO ON THIS MONSTER WHO TOOK OVER MY LIFE MOVED IN AND WON'T GO HOME. THANK YOU FOR YOUR KINDNESS.I LOST MY HUSBAND OCT 2015 FROM IDIOPATHIC INTERSTTIALPULMONARY FIBROSIS ,THANK YOU TONI ANN
@toni68 do you have friends/family nearby?
I HAVE ONE DAUGHTER , SON IN LAW AND 3 GRANDCHILDREN. MY HUSBAND DIED OCT,2015 FROM IDOPATHIC PULMONARY FIBROSIS AND BLADDER CANCER, SOLD MY HOME, TO LIVE CLOSER TO MY DAUGHTER. I LEFT THE MANDEVILLE AREA WERE WE LIVED 21YRS THERE MY FRIENDS AND CHURCH WERE ALMOST WALKING DISTANCE. THERE IS NOT MUCH NEAR THIS APARTMENT. ITS' VERY LONELY, TONI ANN
Hi @toni68, that certainly is a lot to deal with. In addition to the MAC group, there are other groups you may wish to follow on Connect, for example:
- Lung Health https://connect.mayoclinic.org/group/lung-conditions/
You could start with this discussion on Pulmonary Fibrosis* https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/
- Autoimmune Diseases https://connect.mayoclinic.org/group/autoimmune-diseases/
Here's a discussion specifically about Sjrogren's https://connect.mayoclinic.org/discussion/sjogrens/
- Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
You definitely have virtual companions here on Connect to help you feel less alone.
That alone time makes you think more about all these struggles. Need to get you out and about.
HI COLLEN, THANK YOU FOR TELLING ME ABOUT MORE GROUP SITES. THEY ARE HELPFUL FOR SURE, BUT THIS ONE HELPS ME IN MIND AND BODY. I HAVE NEVER HAD THAT BEFORE. EACH OF YOU HAVE GIVEN ME MORE INFO ABOUT WHAT MY BODY IS GOING THROUGH, THEN ANY DOCTOR,HOSPITAL OR WEB SITE HAVE EVER SUPPLIED ME WITH. I'M LEARNING SOMETHING NEW EVERY DAY. I HAVE ALL THESE PROBLEMS,JUST DID NOT KNOW THEY HAD A NAME. WITH 2 LUNG DISEAES AND MAC P,LUS SJORGEN'S AND RAYNAUD'S YOU DON'T REALLY KNOW WHICH ONE IS CREATING WHAT INSIDE OF YOUR BODY. EVERY WEEK IT IS A NEW CONCERN TO DEAL WITH. I NO LONGER HAVE HANDS AND FEET TURNING DARK RED AND PURPLE THEY ARE NOW PURPLE AND BLACK. SO I'M READING AS MUCH AS I CAN ,FROM YOU GUYS THANK YOU , TONI ANN
FEELING TIRED ALL THE TIME , LIMITS ME FORM GOING OUT A LOT. ON DAYS OF FEELING BETTER I AM SO HAPPY TO GO AND DO ANYTHING. I CALL THAT MY GREAT DAYS.IT DOES HELP
I'm glad you shared about recent diagnosis of latent TB here, @jewel8888. Glad you came back so we can support you. A new diagnosis is a punch in the gut for sure. We're here for you.
For anyone looking for the group about tuberculosis, it can be found in the Infectious Disease group https://connect.mayoclinic.org/discussion/looking-for-patients-that-have-latent-tuberculosis-and-know-about-their-medicines/