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.

sdwiggs | @sdwiggs | Mar 31, 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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I was a RN on a Pulmonary floor at a hospital. I cared for many vented patients. I became ill May 31,2016. It wasn't until July 31,2016 (after taking numerous antibiotics that had no effect at all on my illness) that I was diagnosed with Stenotrophomonas maltrophilia. I was treated with IV antibiotics for that organism and further tests resulted in a diagnosis of bronchiectasis and MAC. I had to take early retirement because of this illness. I have not treated the MAC, but I am considering it as I am frequently ill.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 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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@jenblalock I have not heard of any controlled studies on that, but I am collecting data and am going to suggest it to NTM.org and possibly the CDC.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 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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@sdwiggs Hi there. I will add you to the list. I too had to leave the work force in 2005 due to mac and frequent illness. I was 48 yrs old.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 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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@sharonestabrook , Hello Sharon. Thank you for posting that you were an RN. Do mind telling me what county and what state is was that you worked in?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 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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@sharonestabrook Ha! I went to add you to the list of nurses who contracted mac; and you were already on it.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 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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@macjane I was up at 4:30 a.m.rocking my dog until 8. Went back to sleep at 8 until 10. Then, had to hold her all day at a certain angle to keep her airway open. She has greatly improved this evening. Here's to hoping you and I both get through the rest of the weekend without serious incident.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 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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@irene5 Awe...sorry to hear that about your Sheppard. My dog is going through a rough time right now, and my hubby and I discussed the possibility of having to put her down before long. I am dreading that day and pray she will just go in her sleep when her time comes. She has rallied tonight and is actually doing much better.

REPLY
sharonestabrook | @sharonestabrook | Mar 31, 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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Ok,, thank you.

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Jane S. Brown | @macjane | Apr 1, 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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Thanks. Dog might be finally feeling better but it seems like he is doing strange things but we will see. Happy Easter.

REPLY
Jane S. Brown | @macjane | Apr 1, 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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Many thanks. Dog and husband seem to be getting better slowly. Happy Easter

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