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

Julie, the isoniazid should be ok. Two of my children took it for a year and had no side effects. Vitamin B is wonderful. The methotrexate, unfortunately, messes with your immune system. Neuropathy is no fun. You are not alone in your struggle with this - latent TB is still a mycobacterium. I have scar tissue from being exposed as a youngster to TB. Whether that contributed to MAC now is anybody’s guess. Wishing you peace of mind!

Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My doctor did a blood workup and called me at home because was concerned with my high B6 level. She called it "alarming." Said to get off all b6 immediately, that high levels kill nuerons...that this may be the cause of the neuropathy. .I had been taking various energy drinks which are loaded with B6. She also said it takes about 8 months to b clear it. I started reading labels. Few people know the danger of over doing vitamins. Wishing you better days.

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/

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

No side effects would be a miracle, I appreciate your saying it is possible. Your having it as young girl must have been hard and now the MAC. I guess some things we will never understand. My lung surgeon from MUSC wants me on the methotrexate since he has seen how sick and covered in rashes I get without. He tried to explain the complications of methotrexate and lung involvement (with RA) and said it's something they do not fully know at this point. I haven't told them I tested positive but will send him a msg next week.

I helped an older woman by letting her stsy at Our house. I was glad I was informed about Mac symptoms because she had terrible cough and was due for biopsy. Sadly, she fell breaking her wrist and damaging groin. She is getting rehabilitation care, does not have Mac or TB. Quite the scare for me. I learned I best be more careful especially now. Take care Irene, good to chat again.

You will have good days and bad days. Most importantly try to stay positive, eat well, and try as much as possible to keep the stress down. I pray 24/7!

Good thing your Dr. Caught it and it hopefully your symptoms do not take that long to subside.

I've had lots of hand neuropathy from cervical discs and they are mostly better since surgery in 2015. I also had a reaction with Otezla and terrible neuropathy with hands. Like she said it will get better with time and that is most comforting news.

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?

Does anyone else have Anklyosing Spondylitis?

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