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.

pamelasc | @pamelasc1 | Mar 26, 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 Terri... will do! Pam

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lindam272 | @lindam272 | Mar 27, 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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Sorry for the delayed response. Was in the hospital when your email came over. Had pneumonia and was having trouble breathing. I have not had aspergillus but I know someone who has had it. She has CF and MAC. Her doc treats it when he can, but it takes 2nd seat to the MAC and CF. I'm not sure what drugs it's treated with. Sorry I'm not much help here. Linda

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tdrell | @tdrell | Mar 28, 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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@lindam272 sorry to hear you were in hospital and had pneumonia...was it Influenza? Hope you will stay well tdrell

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 29, 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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@lindam272 Hi Linda. Gosh, you much have been pretty sick for them to hospitalize you. Pnuemonia is the worst! Of all of the lung issues I've had, that one always made me feel the worst. How are you doing now?

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Jane S. Brown | @macjane | Mar 29, 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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Terri, My computer system and phone went down. I was trying to see about the effects of Effexor and coming off of it. I know I had this sent but cannot bring this back up. I waited this long as I had critically ill dog and husband very sick as well.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 30, 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 Hi Jane. Wow, sounds like you've had a lot going on, and not in a good way either. I can totally relate to what you are going through right now. Our computer just died because it was so old. Hubby is frustrated learning the new one. Our 12 yr old pup is suffering with a collapsing trachea among other health issues and is not doing good. I hope your husband will feel better soon. How about your furbaby? Will it pull through it's illness? I sure hope so. Please keep me posted on how things are going for you.

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Jane S. Brown | @macjane | Mar 30, 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 so much for your words. We will just have to wait and see how husband and dog make it through Easter weekend.

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irene5 Irene Estes | @irene5 | Mar 30, 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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I’ll pray you all have a blessed and uneventful Easter weekend. We just had to put one of our shepherds down. She had degenerative myelopathy and was suffering as her kidneys shut down. We agonized over the decision, and we probably waited too long. But we were not ready! Someone once said to me “When your dog can no longer be a dog, that’s when you know.” They are such a part of the family. Her sister is depressed I think. Just sad! Hope yours feels better.

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heathert | @heathert | Mar 30, 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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I really feel for you all. just the worst decision to make, putting an animal down 🙁
We love our furbabies like family which is great, we give them great lives so they are very lucky. I dont know where I would be without our furbaby.
@macjane I hope your hubby is feeling better soon. Take care

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Jen_b | @jenblalock | 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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That is very interesting. I wonder if there has been a controlled study regarding occupations?

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