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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

tdrell | @tdrell | Oct 31, 2019

hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for viewing....tdrell2gmail.com
https://www.nationaljewish.org/ntmpatientvideos

REPLY
3 replies
irene5 Irene Estes | @irene5 | Oct 31, 2019
In reply to @tdrell "hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for..." + (show)
@tdrell

hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for viewing....tdrell2gmail.com
https://www.nationaljewish.org/ntmpatientvideos

Jump to this post

Thank you!!

REPLY
1 reply
heathert | @heathert | Oct 31, 2019
In reply to @anniepie "Thanks Heather @heathert for planning to stick by us. You've meant a lot to us too..." + (show)
@anniepie

Thanks Heather @heathert for planning to stick by us. You've meant a lot to us too -- hugs!

Jump to this post

@anniepie Thank you, hugs to you too!

REPLY
alleycatkate | @alleycatkate | Oct 31, 2019
In reply to @tdrell "hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for..." + (show)
@tdrell

hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for viewing....tdrell2gmail.com
https://www.nationaljewish.org/ntmpatientvideos

Jump to this post

@tdrell ...I just finished viewing the video on nutrition. It was incredibly informative...Thanks a million for the post...I am excited to view the others. xxoo Kate

REPLY
gj53 | @gj53 | Oct 31, 2019

Thank you for the information on the videos. Visited the site and it looks like a lot of valuable information to listen to. I am recently diagnosed and researching everything to be more informed and know what to ask my doctor.

REPLY
anniepie | @anniepie | Nov 1, 2019
In reply to @chinasmom "@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot..." + (show)
@chinasmom

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait... I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!

Jump to this post

@chinasmom You're a kind and lovely person, thanks and hugs

REPLY
anniepie | @anniepie | Nov 1, 2019
In reply to @judyhodgern "I have been on Clofazamine for about a month and a half now and I have..." + (show)
@judyhodgern

I have been on Clofazamine for about a month and a half now and I have not had any problems with it —I live in Florida so I have a tan so if it’s coloring my skin I don’t know I haven’t had any kind of reactions with it at all.☺️🤞🤞🤞🤞🤞 I always take it with food like it says.

Jump to this post

Thanks Judy @judyhodgern ! Your reply is really appreciated.
I almost laughed and cried when I read the facial skin and eye discoloration can be long lasting when taking Clofazamine and -- laugh or cry -- it affects between 75% and 100% of people who take Clofazimine. I mean -- where do they get all these awful drugs from to treat NTMs???? (Laugh). We really do have to put up with a lot and my heart goes out to everyone

REPLY
1 reply
rits | @rits | Nov 1, 2019

Candy, Tues, Thurs and Sat. (Coughing up gook this a.m. from last night's treatment). I didn't want to take it on M,W,Fri when I take the oral antibiotics.

REPLY
1 reply
rits | @rits | Nov 1, 2019
In reply to @tdrell "hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for..." + (show)
@tdrell

hello everyone.....the videos from the NJH 2019 Patient and family NTM workshop are now ready for viewing....tdrell2gmail.com
https://www.nationaljewish.org/ntmpatientvideos

Jump to this post

Thanks for the link! The second speaker, Dr Pamela McShane, U of Chicago, is my doctor.

REPLY
2 replies
rits | @rits | Nov 1, 2019
In reply to @sounder27 "Rits. When you say 3 times a week...do you mean every other day or 3 days..." + (show)
@sounder27

Rits. When you say 3 times a week...do you mean every other day or 3 days on and 4 days off. Just curious... nurse and pharmacy told me I needed to take it every day. It is hard to fit it into my schedule with getting ready for work and all. I appreciate you feedback. Candy

Jump to this post

I don't know why my reply didn't include your question so repeating. T/Th/Sat. My dr told me to take it 3x a week when I had an exacerbation taking it daily. Daily is probably best but my lungs won't tolerate it.

REPLY
View MoreView Less
Please sign in or register to post a reply.