(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@windwalker

@pamelasc, an easy way to kill it in the showerhead is to fill a baggie with cleaning strength vinegar and twist tie it over the showerhead. Let sit for 3 hrs and remove. Gallon size baggie might be easier to use.

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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

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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@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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@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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@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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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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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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@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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@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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@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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@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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@sueinmn

@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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@sueinmn, When I ladt spoke to someone at special pathogen lab, the fee was quoted $150 to test for mac & included some other bacterias. There was a separate charge to test for pseodomonas. I don't remember what that fee was. They send one sterile sample container with instructions.

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@windwalker

@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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I'm new to this site and appreciate all the input from those contending with this disease! It's my understanding that the MAC exists in the showerhead itself. I was told to dismantle the showerhead once a week and soak it in vinegar. What I also read is that copper kills bacteria. Therefore, I replaced my shower hose and showerhead with copper. The hose is copper infused and the showerhead is solid copper. It's easy peasy to unscrew the head after every shower and drain it and let it air dry, also. I hope this helps! Tonni

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@toni1132

I'm new to this site and appreciate all the input from those contending with this disease! It's my understanding that the MAC exists in the showerhead itself. I was told to dismantle the showerhead once a week and soak it in vinegar. What I also read is that copper kills bacteria. Therefore, I replaced my shower hose and showerhead with copper. The hose is copper infused and the showerhead is solid copper. It's easy peasy to unscrew the head after every shower and drain it and let it air dry, also. I hope this helps! Tonni

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@toni1132 Hi Tonni, Welcom to our group – as you already can see, there is a lot of information here, and a lot of links to other resources. I hope you find some answers that help you deal with your situation. Most of us here are trying to figure out how best to live with our diagnosis and still manage to have a life beyond it – we take varying levels of precautions depending on our level of illness and our circumstances.
I don't know about copper actually killing bacteria – at least mycobacteria (NTM). I believe studies show is that copper does not support the development of biofilm, where the NTM tend to colonize, the way plastic pipe does, but not it actually kills the NTM. That said, your cleaning and drying precautions, together with the copper itself, should help keep down the NTM growth to reduce your exposure.
Since NTM is EVERYWHERE, you cannot completely avoid it, simply minimize your exposure with reasonable precautions. For me that means no hot tubs, no long steamy showers, no digging in the dirt in my Texas yard that I share with chickens and wild birds (and avoiding the dust from it by keeping it covered with native plants) – all sources of aerosolized bacteria, which is the big risk. But I still travel, eat out, socialize (but not with sick people)…
Do you know the composition of the rest of the plumbing at your residence, whether it is copper, plastic or iron? Have you set your water heater to at least 140F to help prevent NTM from colonizing there?
Sue

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Hi, Sue. Thank you for the welcome. I had read about pipes and the effect of copper. I'll try to find it and share the info. I have all copper in the house I'm in right now. I'm in the process of rehabbing my Chick's Beach house and it, too, is all copper. However, when I went to check progress last week, I saw the plumber did not use copper in the rehab job. He used some plastic pipe. Needless to say, that is not staying. I'm meeting the contractor tomorrow and will enlighten him ONE MORE TIME ! PS…. I will check my water heater temperature. Thank you for that !!
I'm curious. You mention your Texas yard that you share with chickens and wild birds. How in the world do you avoid the "dust"? I have two rescue parakeets and my daughter wants me to pass them onto another home. I was in the hospital this past weekend because I had a lung bleed which was somewhat substantial so I had to go to ER and they admitted me. The on call pulmonologist was in partnership with my usual pulmonologist and he too, was wonderful I asked him about my birds and he wasn't to happy to hear about them, but said he didn't want to end my love affair with them so the very least use a mask when I'm around the. What is your experience/knowledge? These are my two little friends and such good company.
Thank you for all your information! Regards. Toni

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