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.

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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2 replies
alleycatkate | @alleycatkate | Feb 6, 2019
In reply to @pfists "Here is a link from the CDC (Center of disease control) on diseases carried by birds..." + (show)
@pfists

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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@pfists, @america....Thanks Shari for this very helpful information on birds. America...Shari (Pfists) also shared another good post on birds to check out. click on her name.

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Brenda R. | @brigby | Feb 6, 2019
In reply to @alleycatkate "@america....@pfists made a comment you should check. It seems questionable that all birds would be carriers....but..." + (show)
@alleycatkate

@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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@pfists I’m sure proper hygiene of any pet is a big factor, too.

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pfists | @pfists | Feb 6, 2019
In reply to @alleycatkate "@america....@pfists made a comment you should check. It seems questionable that all birds would be carriers....but..." + (show)
@alleycatkate

@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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@alleycatkate
America
I think the best advise is to run it by your Dr. like you said Kate.

Many of the diseases are related to bat droppings or pigeon coups where you are exposed to lots of droppings and from ill birds.
If you had a bird a long time and its not sick and its not exposed to other sick animals I think it's probably safe.

Shari

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2 replies
america | @america | Feb 7, 2019
In reply to @pfists "@alleycatkate America I think the best advise is to run it by your Dr. like you..." + (show)
@pfists

@alleycatkate
America
I think the best advise is to run it by your Dr. like you said Kate.

Many of the diseases are related to bat droppings or pigeon coups where you are exposed to lots of droppings and from ill birds.
If you had a bird a long time and its not sick and its not exposed to other sick animals I think it's probably safe.

Shari

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Thanks guys! I will do that. I read a whole lot about birds and pets and I will be sure to ask my doctor at Mayo when I see him next month. For now I’ll be careful with caring for him! He loves to sit with us and also love kissing my daughter on the face. I do not want her to ever have to deal with what I dealing with. I’m hoping that he can always live with us but our health comes first. Thanks again Rita.

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boomerexpert | @boomerexpert | Feb 7, 2019
In reply to @cindyrue "I was living with a parrot for 13 years and when my immune system went down,..." + (show)
@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 @america one doc's opinion on birds is not overwhelming evidence of a problem...many docs have made erroneous judgements about lots of things. Before depriving a critter who knows only your home as his/hers, please do much more research...assuredly birds have nothing to do with contracting MAC or Bronchiectasis...nor immune disorders (I have RA and don't blame my cats for it...).

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2 replies
boomerexpert | @boomerexpert | Feb 7, 2019
In reply to @spencersok "@ @cindyrue, What are some of the food you eat to help your immune system. Reason..." + (show)
@spencersok

@ @cindyrue, What are some of the food you eat to help your immune system. Reason I ask, my wife is immune system is suppressed, tired and weak all the time.

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@spencersok depends on the cause of your immune deficiency...what helps my RA may not help you...recommend you Google "foods for _____" fill in your condition

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boomerexpert | @boomerexpert | Feb 7, 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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@irene5 MAC TB is found in birds but there is no evidence is can be transmitted to humans

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2 replies
boomerexpert | @boomerexpert | Feb 7, 2019
In reply to @heathert "@sallykuni I also get the cramp but find if I have quarter of a banana each..." + (show)
@heathert

@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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@sallykuni @heathert yes...both K and Mg help with muscles cramping and spasms

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boomerexpert | @boomerexpert | Feb 7, 2019
In reply to @tdrell "Everyone.....NTMINFO.ORg answered my email....the NTM workshop to be given this May in Texas will be videod..." + (show)
@tdrell

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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@tdrell thanks a bunch, T!

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