(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.

lindam272 | @lindam272 | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@tdrell, I am in Phoenix, AZ. To answer your question, I would think it's a combination - air which is very dusty, water in pools (lots of them here), misting systems (also just about everywhere). Dust storms, especially this time of year in monsoon season. It's hard to avoid all of it. Linda M

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@tdrell Terri,
they don't know for sure the source or why anywhere is a hot spot, and neither
do the experts. They are trying to get research together to try to figure that
out. I am pretty sure I got MAC in our own hot tub. It was outdoors,
but there were several times we got in it and it smelled a bit like
pond water. On several occasions I would get out of it with itchy red bumps. Two
weeks after I had experienced those things in our tub, I got super sick. I felt
VERY weird. Told my dr that I had the sensation of many small flowers blooming
in my chest. It turned out to be MAC.

tdrell | @tdrell | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

Heathert ...appreciate your offer to be CT resource to me....did have right hand done possibly 20 years ago....in addition to CT had a ganglion hiding by the radial artery...suspecting part of current pain in right and left hands....
Will be utilizing your input/ tips if surgery necessary...did you have a plastic surgeon?tdrell

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@tdrell Also wanted to add that when I used our hot tub, my face was down
close to the water and I did breathe the effervescence from the bubbles. I know
Katherine will not get in a pool period, and who could blame her. I will get in
one if I happen to be at one with friends and take a quick dip only if I am so
hot I can't stand it. And, I do not get my head wet or put my face near the
water. I do swim in the ocean, (not often, I live 15 mins to the Atlantic), but
don't get my head wet etc. I DEFINITELY do not go into hot tubs. If you Google
'Hot Tub Lung' you can learn a lot about it and how that critters breed in the
water jets and pipes. Yuck!! As for you swimming at your sister's pools,
that would be extremely hard to deny yourself. There are links about pools and
MAC. I would Google 'MAC swimming pools Tucson' or 'University of Arizona
Medical Center MAC lung health' That University is a known up and rising
lung specialty hospital and are now doing lung transplants. I feel like they
would have some info. There is also a famous guy with a PHD that studies germs
of all kinds. I believe he wrote a book called "Germ Warfare". He used to have
free seminars at the U of A. I always wanted to go, but was too sick and lacked
energy to do so. This has peaked my curiosity again and will look him up. Please
let me know if you learn anything more about the pools in Tucson.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)

@lindam272 Linda,
will keep fingers crossed for you that tests come back clear.

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)

@lindam272
Linda, curious, how do you feel about swimming in the pools?

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)

@lindam272 thank
you for the occupation response. Noted.

tdrell | @tdrell | Jul 16, 2017

Cilia my appt period at NJH started at 7am on a Thursday in January....routine blood work....a 6 minute walk in respiratory therapy to see if I needed Oxygen while there...an aide came down from adult day unit where you will have a room/bed/ to rest in between appts. Most days end at 5pm.you order no cost from menus in room all 3 meals. There are nurses on floor for teaching and meds if they start you there.
So I had appts on Friday then weekend with nothing going on....then appts the next week....Monday thru Friday....except one item I had for Wednesday was cancelled soooooo had a day off.
I stayed in hotels with shuttles since I had no car....so I used the list from NJH re hotels giving rates. If you have a car, you will save money by not having shuttle,.....parking is free at NJH.
They spread the appt over several weeks so they can add tests and appts as needed.
I had had a lot of tests done prior to arrival and had all sent in advance to NJh....none the less lots were added.
What other questions do you have? Tdrell

terryb1 | @128128terry11t | Jul 16, 2017

In reply to @lindam272 "Hi, All, - I had my check up with my ID doc a couple of days..." + (show)

Not sure if I ever replied to your occupation request. I am (will be retiring in December) a college professor. Even though my students were in graduate school, many would come to class really sick. Others would take off if they had the sniffles! Terry

Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2017

In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)

@tdrell That is a good idea. I had already written down all of his info
to contact him on another matter. It was either in a video or article of his, he
had mentioned that where pinkish/orange bacteria grows, MAC does not, and that
if anybody noticed this color growing in their tubs or sink drains; to let him
know. That they would like to have that info for research. We have that here in
S.C. My region near the ocean does anyway. We always know when it is time to
scrub the toilet because it will develop a pink ring at the water line. My
bathrooms don't get to the point of neglect that more pink is growing; but, I
have seen other people's with it growing on the tubs and shower curtains.
Anyway, I need to let him know that it is here. Now, I want to send a water
sample to the CDC to be tested. I got MAC in Tuscon, Az then moved to S.C. five
yrs ago and was treated for the MAC. It hasn't been back since it was cleared in
2013. I did get pseudomonas though last Spring. : ( As
horrible as MAC is, I do find it interesting.

View More View Less

Please sign in or register to post a reply.