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 | Jan 17, 2020
In reply to @tinaesims "I have the shower head that you can flip open. Do you think I need to..." + (show)
@tinaesims

I have the shower head that you can flip open. Do you think I need to soak it with vinegar? I wipe it down after every use with a vinegar cleaning solution that has vinegar in it.

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@tinaesims What you are doing now sounds sufficient to me. You have the added benefit that your shower head opens to dry. I feel like you are in good shape on the course you are on.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2020
In reply to @sueinmn "@pamelasc1 @windwalker Pam - Terri's vinegar solution is endorsed by the MAC specialists at National Jewish..." + (show)
@sueinmn

@pamelasc1 @windwalker Pam - Terri's vinegar solution is endorsed by the MAC specialists at National Jewish Health. At least in my home, it is certainly easier to do than removing the shower head and boiling (especially since I think repeated boiling would ruin the rubber washer/gasket thingies. It is important to use cleaning/industrial strength (7-10% acetic acid) as mixed results have been shown with household strength (3-5%.) I get mine from a friend who works in a lab, so don't know a retail source, sorry. I'm sure others here can tell you where they find it.
Terri - How often do you treat your shower heads? I admit my effort is hit-or-miss, kind of when I think of it, but possibly not often enough.
Sue

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@sueinmn I try to do mine every six months. I am having my water tested this month.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2020
In reply to @sueinmn "@pamelasc1 @windwalker Pam - Terri's vinegar solution is endorsed by the MAC specialists at National Jewish..." + (show)
@sueinmn

@pamelasc1 @windwalker Pam - Terri's vinegar solution is endorsed by the MAC specialists at National Jewish Health. At least in my home, it is certainly easier to do than removing the shower head and boiling (especially since I think repeated boiling would ruin the rubber washer/gasket thingies. It is important to use cleaning/industrial strength (7-10% acetic acid) as mixed results have been shown with household strength (3-5%.) I get mine from a friend who works in a lab, so don't know a retail source, sorry. I'm sure others here can tell you where they find it.
Terri - How often do you treat your shower heads? I admit my effort is hit-or-miss, kind of when I think of it, but possibly not often enough.
Sue

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@sueinmn I try to clean my showerhead every six months. (BTW, I am having my water tested this month.) I buy the industrial cleaning strength vinegar at Lowe's hardware store.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 18, 2020
In reply to @windwalker "@sueinmn I try to clean my showerhead every six months. (BTW, I am having my water..." + (show)
@windwalker

@sueinmn I try to clean my showerhead every six months. (BTW, I am having my water tested this month.) I buy the industrial cleaning strength vinegar at Lowe's hardware store.

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@windwalker Thanks Terri. Then I don't feel bad - I think I do mine about that often. I wonder how much it helps, though, since there is no way to clean the supply pipes.
I have thought seriously about water testing too, in both of my residences. Do you know whether they test the samples from each tap/faucet/showerhead separately, or if they commingle them and give one result for the entire house? And how do they compute the cost, by the specimen or by the job?
Hope your rental rehab is progressing and you and your husband are not too worn out! Sue

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Tina Sims | @tinaesims | Jan 18, 2020

Who do you get to tests the water? I talked to a plumber one time and they just looked at me cross-eyed.

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kathyhg | @kathyhg | Jan 18, 2020

I had a similar reaction when I asked. I also asked companies that sell home water treatment products and got the same reply from them too!

How do you start to track someone down to test your water???

Thanks

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 18, 2020
In reply to @tinaesims "Who do you get to tests the water? I talked to a plumber one time and..." + (show)
@tinaesims

Who do you get to tests the water? I talked to a plumber one time and they just looked at me cross-eyed.

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@tinaesims and @kathyhg Here is one place to check on testing: http://www.specialtylabs.com/ From previous posts it was reported that the cost is $150. I am not sure how many specimens that would cover. Perhaps one of you can check and report back to the group as I'm sure many people here are curious. Sue

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Tina Sims | @tinaesims | Jan 19, 2020
In reply to @sueinmn "@tinaesims and @kathyhg Here is one place to check on testing: http://www.specialtylabs.com/ From previous posts it..." + (show)
@sueinmn

@tinaesims and @kathyhg Here is one place to check on testing: http://www.specialtylabs.com/ From previous posts it was reported that the cost is $150. I am not sure how many specimens that would cover. Perhaps one of you can check and report back to the group as I'm sure many people here are curious. Sue

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It doesn't show MAC as one of the things they test for in my area.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 19, 2020

@tinaesims Here is a specific link for sending water for testing. You will need to contact them to learn the cost for what you need done. https://www.specialpathogenslab.com/environmental-mycobacterium-culture.php
Perhaps there is someone on the group who can speak to this issue, so I am going to start a new thread called "Have you head your water tested?" Watch it for answers. Sue

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 2020
In reply to @sueinmn "@windwalker Thanks Terri. Then I don't feel bad - I think I do mine about that..." + (show)
@sueinmn

@windwalker Thanks Terri. Then I don't feel bad - I think I do mine about that often. I wonder how much it helps, though, since there is no way to clean the supply pipes.
I have thought seriously about water testing too, in both of my residences. Do you know whether they test the samples from each tap/faucet/showerhead separately, or if they commingle them and give one result for the entire house? And how do they compute the cost, by the specimen or by the job?
Hope your rental rehab is progressing and you and your husband are not too worn out! Sue

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@sueinmn Hi. The rehab on our rental is only half done. My hubby put the new roof on himself. I am still exhausted from working on it. We are going back up in Feb to finish the work.

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