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.

auntnanny | @auntnanny | Jul 30, 2017

No..... that's what's troubling me. However, when I was at Rochester, they picked up on the MAC right away -- didn't have to wait -- but said it was very minute. I'm thinking if the lab finds the initial report negative that perhaps they are going ahead with the culture. I will request it the next time I have to take in a sample. I'm assuming the initial report can be negative and the MAC still be there??????

REPLY
2 replies
auntnanny | @auntnanny | Jul 30, 2017

How can Mayo's get results of a MAC culture quickly and other labs cannot? That's not understandable to me either. You can see..... I don't know much.

REPLY
1 reply
becky33 | @becky33 | Jul 30, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

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Do not understand about the culture taking 6 wks. Dr Anderson at Washington University St. Louis, Mo is running a 3 day sputum culture on me every month. He says it takes 20 days for the MAI to grow. So far, after 7 mo's all the cultures are positive. He is now running a test to see if I'm resistant to the 3 drugs. Is Dr. Anderson not running the proper tests on me??? Before the 9,300 mg of antibiotics a wk I could hardly go out in public my cough was so bad, with the meds the cough is much better. I also use a Smart Vest 10 min 2 times a day to help loosen the mucus so I can cough it up. I feel better because the cough is better, have much more energy but hot flashes are almost unbearable, very fatigued after a few hrs of being active but can do yoga again now. My joints ache but I'm afraid to take anything for pain because I figure that my liver and kidneys are getting enough work out with 9,300 mg of antibiotics a wk. I go back to Dr. Anderson on Sept 1st so need to know if he is running the proper sputum culture tests as so far they are just showing positive for MAI.

REPLY
auntnanny | @auntnanny | Jul 30, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

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Ladies..... please don't smile when I ask but what is MAI??????? I may be missing out on something. Jan

REPLY
ling123 | @ling123 | Jul 30, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

There is a dilemma in suppressing coughs. This article might help you understand why:

https://academic.oup.com/cid/article/30/3/572/601429/Lady-Windermere-Syndrome-Middle-Lobe

It seems to suggest that suppressing coughing voluntarily could lead to MAC. This is also what my pulmonary doctor has told me when I told him my effort in trying to suppress the annoying coughs for many years.

REPLY
robynmar | @robynmar | Jul 30, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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Thank you so much for posting this, Terri! I am sending a copy to my kids as well as turning up the temperature on my water heater! It is entirely possible that I was reinfected by the 50 year old water system in my home (although we have replaced the water heater)! My doctor also talked about the bacteria that live inside the pipes in our homes. I see research online about this regarding hospitals, but not about residences. My husband worked for the local water district and never heard about the MAC bacteria, only giardia and the more common bacteria. Robynmar

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Jamie Olson | @jamienolson | Jul 30, 2017

Hello @auntnanny. A majority of the time, testing that is done at Mayo is sent to pathology labs within Mayo walls. Scans that are done at Mayo are read by Radiologists within the same walls. The turnaround time for results is lightning fast! That's the beauty of picking a "well oiled machine" facility like Mayo Clinic to take on your healthcare. Other facilities don't have that capability and have to send specimens to outside facilities.

REPLY
1 reply
ling123 | @ling123 | Jul 30, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

@robynmar, I think the reason that your husband has not heard about MAC is that, although MAC is ubiquitous (both in water and in soil), they are harmless to most people who come across them. They only cause problems to those whose lungs and/or immune systems are compromised.

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auntnanny | @auntnanny | Jul 30, 2017

Thank you, Jamie...... I thought when I was there all testing and results were done immediately but since then everyone says 6-8 weeks to culture. This old gal thought she was confused. Thanks again

REPLY
boomerexpert | @boomerexpert | Jul 30, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

@ling123 & @robynmar: Sorry to keep repeating this, but MAC is very underreported so many people most likely have it that are not being counted, thus the conservative estimate that infections are growing by 8% a year (that's a lot), and it is no longer infecting just those with compromised immune systems...people with normal systems are getting it now. The reason folks don't know about MAC is that there's no reporting requirements for it like other infectious diseases (like it's cousin TB), interestingly because it's not transmitted person to person, yet that it's transmitted through the water we all use, and the soil we all trod doesn't seem to be considered as dangerous (go figure...). That's why its incumbent upon all of us to educate (all, including doctors who know little about it) and advocate (for visibility and research)!

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