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!

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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:
- 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.

Jo Ann K | @jkiemen | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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Have the Cultures return positive for MAI and if so a type? HIV is positive?

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Jo Ann K | @jkiemen | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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You can add me to the list of Healthcare Workers with MAC. I was working the weekend I came down with Pneumonia when is was diagnosed.

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nick52 | @nick52 | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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@flib showers has nothing to do with MAC according to my infectiologist!

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nick52 | @nick52 | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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@cmcclure i understand you and it is very frustrating gee I know the feeling! Be careful they may give you a diagnosis that is not cover under the Workcom just to stay away from there responsibility. I don’t know about others but what you describe doesn’t sound

like a MAC to me.  I never had that reflex. you may have been diagnose un properly.  Find another specalist.  They might be playing a game of responsability with you.  I was once diagnost with fibromyalgia and I didn’t had that so I got myself treated and

few years after I took a lawyer to settle the case.   See what I mean!

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lindam272 | @lindam272 | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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Showers do carry the bacteria as it is in the plumbing and dispersed in the water. It's the mist from the shower that is most likely to infect you. At the least, make sure you have your exhaust fan running. I started taking tub baths instead of showers. Same with misting systems, lawn sprinklers, etc. If you listen to the experts on some of the audio from previous conferences, you will hear them say the same thing. I won't live in a bubble, but I do try to control what I can.

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Jennifer | @megan123 | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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Mac is found in the plumbing and shower heads. this is why it's suggested to take baths instead of showers...just saying✌️

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irene5 Irene Estes | @irene5 | Mar 16, 2018
In reply to @cmcclure "hello i am looking for information to support my theory that working at prison with hospice..." + (show)
@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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The incidence of MAC has increased proportionately to the number of people showering. Years ago people took more baths.

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sharonestabrook | @sharonestabrook | Mar 17, 2018

You can add me. Worked as a RN 45 years.

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4 replies
nick52 | @nick52 | Mar 17, 2018
In reply to @sharonestabrook "You can add me. Worked as a RN 45 years." + (show)
@sharonestabrook

You can add me. Worked as a RN 45 years.

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Nocives add me as a teacher

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