(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@cindyrue

I was living with a parrot for 13 years and when my immune system went down, i got this disease. The dr. told my husband to get that bird out of our home and bring hazmat in. He said no human should bring a bird into their home. I am finding that being around sick people is not good for me. When i get a cold, it turns into much more and i get so sick. Because i dont look sick, people do not take me seriously. I am fighting upper respiratory infection now and it is awful. I am so tired and weak. We have to eat things that help our immune system.

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@cindyrue, @alleycatkate, our family had a parakeet for 11 years as I was growing up. I have Avium and abscessus in lungs, abscessus & MRSA in sinuses. Just got over a round of HIB in lungs. 10 days of DS Cifruoxime antibiotic seemed to help; time will tell.

I Was told MAC Avium had nothing to do with birds. I also had bad pneumonia bouts every 10 years of life, now 57, finally diagnosed 3 years ago. Was an athlete and coach. Never smoked. Always just fought through sickness, as trained, until 3 pneumonia bouts in 2015 and eventual diagnosis. Overused antibiotics to “keep going”.

Now my “ training” is having the discipline each day, with God’s help, to do my 2 hours daily airway clearance!

Liked by tdrell, alleycatkate

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@rlrobi2

I have had this for four years, now coughing up blood? Is this common in alpha one and mai cases?

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@rirobi2 I cough up blood now and then, the first time lots came out and I ran to emergency. They really cant do anything unless it wont stop, then they will do intervention therapy to cauterize the broken vein in lung with a lazer. I have bled 4 or 5 times, but dont go to hospital, it always stops. I stand over the sink and get it out. However one has to keep clearing the airways before the blood clots, that is the danger. So learn to hawk up and spit really well. I had 2 teenage boys so learned from the best.!! I know it is terrifying but mine has always stopped, I guess I am used to it? I guess we can adjust to anything. The docs want to know if it is half a cup or so, in case need transfusion, xo

Liked by Brenda R.

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@brigby

@cindyrue, @alleycatkate, our family had a parakeet for 11 years as I was growing up. I have Avium and abscessus in lungs, abscessus & MRSA in sinuses. Just got over a round of HIB in lungs. 10 days of DS Cifruoxime antibiotic seemed to help; time will tell.

I Was told MAC Avium had nothing to do with birds. I also had bad pneumonia bouts every 10 years of life, now 57, finally diagnosed 3 years ago. Was an athlete and coach. Never smoked. Always just fought through sickness, as trained, until 3 pneumonia bouts in 2015 and eventual diagnosis. Overused antibiotics to “keep going”.

Now my “ training” is having the discipline each day, with God’s help, to do my 2 hours daily airway clearance!

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@cindyrue Just looked up AVIUM and it is BIRDS in latin, so someone is giving confliction info.

Liked by alleycatkate

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@pfists

Hi all
There are some serious diseases carried by birds Histoplasmosis is one.
Another Bird Fanciers Lung BFL.
I stay clear of birds but I do like to watch them at my bird feeder outside my window though.

Here is a list I found online:

Cryptococcosis (Cryptococcus neoformans) …

Histoplasmosis (Histoplasma capsulatum) …
Mycobacterium avium complex (MAC, Avian Tuberculosis) …

Parrot Fever (Psittacosis; Chlamydiophila psittaci)

So it looks as if MAC Avian TB is Also carried from birds.

Take care
Shari

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@pfists ….I did not think in general transmission occurs for NTM infections directly between animals/birds and humans….as with M A C….but rather the droppings fall into soil and are aerosolized.. tdrell

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I think you are correct!

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@pfists

Hi all
There are some serious diseases carried by birds Histoplasmosis is one.
Another Bird Fanciers Lung BFL.
I stay clear of birds but I do like to watch them at my bird feeder outside my window though.

Here is a list I found online:

Cryptococcosis (Cryptococcus neoformans) …

Histoplasmosis (Histoplasma capsulatum) …
Mycobacterium avium complex (MAC, Avian Tuberculosis) …

Parrot Fever (Psittacosis; Chlamydiophila psittaci)

So it looks as if MAC Avian TB is Also carried from birds.

Take care
Shari

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Here is a link from the CDC
(Center of disease control) on diseases carried by birds and safety measures you can take if you have a bird.

I'm not certain on if MAC can come from birds
However the word avium means bird.
(Mycobacteria avium complex)
Would be good to know if it does or not.
https://www.cdc.gov/healthypets/pets/birds.html
Shari

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@tdrell

@pfists ….I did not think in general transmission occurs for NTM infections directly between animals/birds and humans….as with M A C….but rather the droppings fall into soil and are aerosolized.. tdrell

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@tdrell

Liked by Brenda R.

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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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@rlrobi2

I have had this for four years, now coughing up blood? Is this common in alpha one and mai cases?

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@rlrobi2 I also coughed up blood before my initial diagnosis of bronchiectasis and MAC. There was a LOT of blood and it continued to come out throughout the night in the ER. But it did stop the next morning when I was released. I don't have alpha one (don't know what that is) but did have MAC/MAI. From what I have read about this type if infection, some people never cough up blood and some do. My pulmonologist confirms my findings. The amount of blood can vary from person to person. After the first incident over 4 years ago, it happened for the second time shortly after but there was only a trace of blood in the mucus that I spit out. Since then, no blood at all. There is no need to panic. It is the result of the infection in your lungs. Like @unicorn said, you only need to do something if there is large quantity. But if you are concerned, I would suggest make an appointment and get more information and assurance from your doctor.

Liked by tdrell

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@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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Good to know. Thanks so much!

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@phyllistamara

am going to start azithromycin,Rifabutin,and Ethambuton for MAC. I also have Bronchiectasis
Wish I knew others who took these drug to help with this disease to quell My fears

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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!

Liked by extracare808

REPLY
@brigby

@cindyrue, @alleycatkate, our family had a parakeet for 11 years as I was growing up. I have Avium and abscessus in lungs, abscessus & MRSA in sinuses. Just got over a round of HIB in lungs. 10 days of DS Cifruoxime antibiotic seemed to help; time will tell.

I Was told MAC Avium had nothing to do with birds. I also had bad pneumonia bouts every 10 years of life, now 57, finally diagnosed 3 years ago. Was an athlete and coach. Never smoked. Always just fought through sickness, as trained, until 3 pneumonia bouts in 2015 and eventual diagnosis. Overused antibiotics to “keep going”.

Now my “ training” is having the discipline each day, with God’s help, to do my 2 hours daily airway clearance!

Jump to this post

@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

@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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@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

Jump to this post

@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.

Liked by alleycatkate

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@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!

Jump to this post

@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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