1. < MAC & Bronchiectasis

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

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!

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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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 7, 2018
In reply to @tdrell "Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but..." + (show)
@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

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@pkayh My sister-in-law does. It affects her back and her eyes. Do you have it also?

REPLY
boomerexpert | @boomerexpert | May 8, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@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

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@toni68 do you have friends/family nearby?

REPLY
toni68 | @toni68 | May 8, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@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

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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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2018
In reply to @tdrell "Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but..." + (show)
@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

Jump to this post

Hi @pkayh, you will find discussion about ankylosing spondylitis in the Bones, Joints & Muscles group. I encourage you to take part in this discussion group:
https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@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 @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.

REPLY
Jo Ann K | @jkiemen | May 9, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@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

That alone time makes you think more about all these struggles. Need to get you out and about.

REPLY
Suzie2017 | @suzie2017 | May 10, 2018

I took my husband to the Infectious Disease doctor yesterday and he has ordered a bronchial scope prior to putting him on any treatment for Pulmonary MAC infection. The bronchial scope will be Tues. He said he wants to rule out cancer before proceeding. He has a shadow on his lung and the Pulmonologist said today that it is too risky to do a biopsy during the procedure due to his blood thinners, but he will “brush” the shadow to try to get something to look at. The substance that will be pulled out of his bronchial tubes will be sent to a Jewish Colorado Hospital for processing which will take about 4 - 5 weeks. I started to wonder that if the treatment plan of 3 antibiotics is used, what will the cost be. My husband has Medicare and a good supplemental.

REPLY
8 replies
toni68 | @toni68 | May 10, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@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 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

REPLY
toni68 | @toni68 | May 10, 2018
In reply to @jewel8888 "It's been a while since I've posted. Your help was most important to me while my..." + (show)
@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

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

REPLY
toni68 | @toni68 | May 10, 2018
In reply to @flib "Sorry for so many worries. I have just been diagnosed with neuropathy in my feet. My..." + (show)
@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.

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THANK YOU FOR TELLING ABOUT B6, I WAS GETTING READY TO BUY SOME I'LL TALK TO MY DOCTOR FIRST, BETTER YET I'LL JUST WON;T GET ANY. THE LAST THING I NEED IS TO CREATE A NEW PROBLEM THANK S AGAIN. TONI ANN

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