(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

Sophie, you will be in my prayers! Hang in there and keep up the good work!

REPLY

Thank you. The prayers mean a lot.

REPLY
@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

I will pray for you, that is something every one of us can do for each other.

REPLY

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

REPLY

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!

REPLY

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.

REPLY
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

Jump to this post

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/

REPLY
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

Jump to this post

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

REPLY

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.

REPLY

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!

REPLY
@flib

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.

Jump to this post

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.

REPLY
@jewel8888

It's been a while since I've posted. Your help was most important to me while my providers and I monitored a cavitary lesion dx 2 yrs ago. Good news….they say it's non cancerous and is stable not needing followed. Bad news..30 days later my Rheumy says I am positive for latent TB. It's happened within last 2 yrs and I have RA, Psoriatic arthritis, Sjorgrens. I feel the weight of the world on me having to take the isonizid and vit. B. I realize this group discusses non tb mac but you are my friends and feel I need you close by again.

I have concerns about neuropathy, liver, upset stomach, needing my methotrexate, muscle pain in thoracic. It is a lot to digest and I put the question to main site since I couldn't find tb group…i miss you wonderful friends here too!!!

Thank you,
Julie

Jump to this post

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?

REPLY
Please sign in or register to post a reply.