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(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.

america | @america | Feb 6, 2019
In reply to @alleycatkate "@brigby ....I am glad to hear that your understanding is that there is no relationship between..." + (show)
@alleycatkate

@brigby ....I am glad to hear that your understanding is that there is no relationship between MAC and birds. I know @america will be glad to hear that. I had never heard of the association so wanted to see if it was valid....and it would be a shame for @america to break her daughter's heart by getting rid of her bird for no reason. Thanks!! Would you mind sharing what you do for airway clearance? Two hours is a lot of maintenance...but glad to hear that it is working for you. I am doing just saline nebulizing and an occasional acapella device clearance. Good luck going forward. Kate

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I am overjoyed with that news!!! Now I don’t need to worry about our bird Zeus. He is the sweetest little creature. My daughter is 23 in college and she has OCD, depression and anxiety and our bird has done wonders for her. Thanks so much Kate for that information it means a whole lot to me. Hugs Rita.

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Brenda R. | @brigby | Feb 6, 2019
In reply to @alleycatkate "@brigby ....I am glad to hear that your understanding is that there is no relationship between..." + (show)
@alleycatkate

@brigby ....I am glad to hear that your understanding is that there is no relationship between MAC and birds. I know @america will be glad to hear that. I had never heard of the association so wanted to see if it was valid....and it would be a shame for @america to break her daughter's heart by getting rid of her bird for no reason. Thanks!! Would you mind sharing what you do for airway clearance? Two hours is a lot of maintenance...but glad to hear that it is working for you. I am doing just saline nebulizing and an occasional acapella device clearance. Good luck going forward. Kate

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@alleycatkate

1 hour in am and 1 hour in pm:

Vest, nebulizer, aerobika, postural drainage simultaneously, then Navage (I take my Gentamicin inhalant & Budesonide during my sinus rinse) then wash & sterilization of all equipment takes about 1 hour. Hope this info can help someone else; I’ve only had 1 exacerbation in a year; no hospitalizations.

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1 reply
heathert | @heathert | Feb 6, 2019
In reply to @sallykuni "Hi Phyllistamara! I have been on these drugs for over 4 months now - started on..." + (show)
@sallykuni

Hi Phyllistamara! I have been on these drugs for over 4 months now - started on October 1, 2018. I have had to play around with the times of day that I take them. For me, it works if I take them right before bedtime. I sometimes wake in the night with cramping; but sometimes do not. I think that mostly has to do with what I ate during the day - green salads, fried foods, and dairy products tend to upset my stomach more than others (which is sad because I love green salads!). I try to eat more carbs than I did before - which helps settle my stomach. And drink lots and lots of water.
I also go to the eye doctor and have my eyes checked every 3 months while on the big 3.
So far so good!

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@sallykuni I also get the cramp but find if I have quarter of a banana each day it goes away. Maby something for you to try, I think its the potassium.

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1 reply
heathert | @heathert | Feb 6, 2019
In reply to @irene5 "That was one of the first things I was asked at diagnosis. Have you been around..." + (show)
@irene5

That was one of the first things I was asked at diagnosis. Have you been around birds? Apparently, MAC is associated environmentally with birds. I had a homing pigeon as a child, and my aunt, who I spent many summers with in New York State, had two really cool parakeets. Something to think about I guess.

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Yes I have also heard about birds and MAC and other lung problems. I am not sure if it comes from their poop or in their feathers.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 6, 2019
In reply to @heathert "Yes I have also heard about birds and MAC and other lung problems. I am not..." + (show)
@heathert

Yes I have also heard about birds and MAC and other lung problems. I am not sure if it comes from their poop or in their feathers.

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Pop, and nasal secretions. After much exploration I believe my MAC came from soul contaminated by the free range chickens under my citrus trees in Texas. My husband used a blower to clear out the leaves, stirring up huge dust clouds. Shortly after that I became very I'll. Now the cleaning is done by taking and bagging when the leaves are damp. The gardener wears protective clothing and a good mask, finishes by washing down the patio. We keep the house closed and I stay well away.

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1 reply
Brenda R. | @brigby | Feb 6, 2019
In reply to @pfists "Tdrell Here is from the CDC complex (MAC, Avian Tuberculosis) MAC is a bacterial disease spread..." + (show)
@pfists

Tdrell
Here is from the CDC

complex (MAC, Avian Tuberculosis)
MAC is a bacterial disease spread to people from birds and other animals through the environment. Affected birds can become depressed, thin, and weak, and might have diarrhea. Birds carrying this disease shed large amounts of the bacteria into the environment.

Experts believe that people get MAC through exposure to the bacteria in the environment, though it is not clear exactly how the bacteria are transmitted. This disease primarily affects people with a weak immune system. Affected people might lose weight, have abdominal pain or diarrhea, and be anemic or feel tired.

So I'm not sure....it does say they arn't sure how it's transmitted.
I do think the main source is water but may want to take precautions around birds.
Shari

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@pfists

This is from the CDC, no less?? Do you know the date on this?

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tdrell | @tdrell | Feb 6, 2019

Everyone.....NTMINFO.ORg answered my email....the NTM workshop to be given this May in Texas will be videod and posted afterwards on their web site! Tdrell

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1 reply
alleycatkate | @alleycatkate | Feb 6, 2019
In reply to @brigby "@alleycatkate 1 hour in am and 1 hour in pm: Vest, nebulizer, aerobika, postural drainage simultaneously,..." + (show)
@brigby

@alleycatkate

1 hour in am and 1 hour in pm:

Vest, nebulizer, aerobika, postural drainage simultaneously, then Navage (I take my Gentamicin inhalant & Budesonide during my sinus rinse) then wash & sterilization of all equipment takes about 1 hour. Hope this info can help someone else; I’ve only had 1 exacerbation in a year; no hospitalizations.

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@america....@pfists made a comment you should check. It seems questionable that all birds would be carriers....but possibly some that appear sick. I am just not sure from the responses but would think it might be good to run it by a really good Doctor that is up to date before you would make any decision about your pet. It seems you can get this from most everything!!! Even the kitchen sink! Kate

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