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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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 Hi. I would assume your mac is work related as so many members on this site have come from healthcare backgrounds.

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cmcclure | @cmcclure | 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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Thank you God some one is thinking go get um Terri

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cmcclure | @cmcclure | 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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im listening I have had three positive sputum a couple negative ..Im listening.

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cmcclure | @cmcclure | Mar 16, 2018
In reply to @cmcclure "Please bare with me ( and my typing) allow me to be more candide. Bacteria are..." + (show)
@cmcclure

Please bare with me ( and my typing) allow me to be more candide. Bacteria are always evolving 20 maybe 30 years ago this would be called TB period. I am looking to set president. Are there no studies that follow health care workers or number them or something that for fact state there is a higher incidence of this infection in this occupation? Seriously narrow it down who has the highest infection rate besides.. HIV or other with comorbidities. If it is the health care worker that doesn't smoke isnt immune comprimised etc then why? For me the answer is simple play at the beach and you will come home with sand in your hai,r pants and shoes ect. play else where and chances of getting of coming home contaminated with sand .. very low. Hell I may have just came up with my argument analogy

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You young lady have my attention..

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joan912 | @joan912 | 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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My husband was a physician who worked with drug addicts who had HIV and MAC in the mid-80's. He certainly was exposed to the bacteria and was able to fight it until the last few years.

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cmcclure | @cmcclure | 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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Work related, "they" said prove it left this prison in march DX in June 3 weeks after being released from isolation (s/s massive hemoposis they thought TB me too, released by hospital ) but called back 3 weeks advise i was probably HIV+after four negative PCR started MAC TB tx . Prove it so im gonna "prove it.I think i might have another AFB done

REPLY
Flib | @flib | 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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Does this mean one should not take showers?

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cmcclure | @cmcclure | 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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Ct displayed resolving LLL infiltrate resolving it was wedge shaped and the "rad guy" said at the time it was consistent with Pneumonia call bs i read these all the time and that is not pneumonia blah blah blah. and it may happen but ive not experienced pt with hemoptysis as I had . in four hour s I couphed up 200mls pretty and pink not counting what was all over the sheets prior to waking. Im gonna do a recheck my self thank you for the info im gettuing amantox test

REPLY
heathert | @heathert | 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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@joan912 does your husband have any idea of if he caught it from his patients? So many health workers seem to have this.

REPLY
joan912 | @joan912 | 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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Perhaps working with folks with severely compromised systems, may have compromised his, as well. As to whether he got MAC from them, he hasn't speculated.

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