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Have you had your water tested?

Posted by Sue, Volunteer Mentor @sueinmn, Jan 19, 2020

There has been some recent discussion about having home water supply tested for MAC/NTM. People seem to be having difficulty finding a resource to have this done. If anyone has had their home tested, could you please let us know a few details? Here are some of the questions, but you don't have to answer all of them - any info you can provide will be helpful:
Which lab(s) did you use?
What was the approximate cost?
What was the sampling process?
What was the turnaround time?
What did you learn, how detailed was the report, and was it understandable to a layman who is not a microbiologist?
Did the lab have someone you could contact directly with questions, either by phone or email?
Overall, how satisfied were you with the test?
Thank you for any help you can give!
Sue

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

becleartoday | @becleartoday | Dec 10, 2022
In reply to @msk "Sue I have started arikacey and one of the things the nurse who trained me to..." + (show)
@msk

Sue
I have started arikacey and one of the things the nurse who trained me to use the medicine said was that i had to boil my drinking water. I have no problem with that but was wondering what the logic behind it. According to my infectious disease dr we inhale the mac that gives ys the infection. I don’t understand why swallowing water would add mac to lungs unless you aspirate. According to the pharmacist for arikayce even bottle water could have mac. Wondering if you have some thoughts on the matter. Thanks
Miriam

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Below are links to excellent talks on GERD. As previously mentioned, the goal is to control as many micro-aspirations as possible. Keep in mind, that even “normal” people micro-aspirate repeatedly throughout the day. I was tested for reflux with a 24 hour PH impedance test and surprisingly I had no aspirations while sleeping. But I did have about 30 aspirations during the day! Those 30 aspirations are considered normal and it was determined that I did not have reflux disease. However with that said, people who have lung disease still want to try to limit aspirations as much as possible.
Best,
Linda Esposito

Dr Gwen Huitt https://youtu.be/lf_hSgJ21BY

Dr Jeffrey King
https://youtu.be/DYK8VnY3GCw

REPLY
1 reply
poodledoc | @poodledoc | Dec 10, 2022
In reply to @becleartoday "Below are links to excellent talks on GERD. As previously mentioned, the goal is to control..." + (show)
@becleartoday

Below are links to excellent talks on GERD. As previously mentioned, the goal is to control as many micro-aspirations as possible. Keep in mind, that even “normal” people micro-aspirate repeatedly throughout the day. I was tested for reflux with a 24 hour PH impedance test and surprisingly I had no aspirations while sleeping. But I did have about 30 aspirations during the day! Those 30 aspirations are considered normal and it was determined that I did not have reflux disease. However with that said, people who have lung disease still want to try to limit aspirations as much as possible.
Best,
Linda Esposito

Dr Gwen Huitt https://youtu.be/lf_hSgJ21BY

Dr Jeffrey King
https://youtu.be/DYK8VnY3GCw

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Linda, That is good information on aspiration while lying down or during the day. I recently returned from Mayo in Jacksonville FL and have started getting some of my lab results. On the routine bacterial culture they found Haemophilus so I was doing a little research and came across some interesting info on aspiration. Here is an excerpt that pertains to aspiration "About half of the adult population aspirates some amount of oropharyngeal secretions while lying down in sleep position, but effective mechanisms like mucociliary clearance, coughing, and humoral and cellular immune processes are in place which protects the lower airways and prevents the occurrence of recurrent infections. That is the reason why silent aspiration is a concern with advancing age and is a significant factor in cases of community-acquired pneumonia" So if one has Bronchiectasis you may be even more likely to aspirate because our airways don't work like normal. The full article is here but it is very lengthy and really pertains mostly to someone with a Haemophilus infection. https://www.ncbi.nlm.nih.gov/books/NBK562176/ Bill

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suethenanny | @suethenanny | Dec 10, 2022
In reply to @msk "Sue I have started arikacey and one of the things the nurse who trained me to..." + (show)
@msk

Sue
I have started arikacey and one of the things the nurse who trained me to use the medicine said was that i had to boil my drinking water. I have no problem with that but was wondering what the logic behind it. According to my infectious disease dr we inhale the mac that gives ys the infection. I don’t understand why swallowing water would add mac to lungs unless you aspirate. According to the pharmacist for arikayce even bottle water could have mac. Wondering if you have some thoughts on the matter. Thanks
Miriam

Jump to this post

Seek out some Joe Falkinham videos or talks on water and biofilm. It may answer most of your queries.

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northland | @northland | Dec 10, 2022

I went right to the source of environmental MAC study...Dr. Faulkinham in Virginia tech, I think. He was so helpful to me. Didn't cost anything. Had it done years ago though...Not sure how inundated he is now with requests either. But I know if he can, he would help.

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annagh | @annagh | Jan 2, 2023
In reply to @n4seth "As a newly diagnosed MAC patient, I have learned so much from all of you! After..." + (show)
@n4seth

As a newly diagnosed MAC patient, I have learned so much from all of you! After reading this post, my husband did some investigation. He found a Special Pathogens Laboratory in Pittsburgh and spent some time in conversation with them. Even though we have well water which typically does not have avium, we are going to have our water tested to find out. This lab tests for all NTM, not just avium. It will cost approximately $200 and will take 7-8 weeks for results. The lab sent us the testing kit complete with return packaging. For inquiries the address is 1401 Forbes AV Suite 401, Pittsburg, PA 15219 and the phone number is 412-281-5335. He also communicated with Dr. Joseph Falkinham from VA Tech who was mentioned in another post. He is out of the office now, but said he would get back to us with the names of other labs who might test for this. Another question I have is how many exposures to avium does it take to become sick? So much to learn.....Nancy

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Thank you for this information about the lab in Pittsburgh. We also have a well, on the same aquifer as the water being "stolen" by Crystal Geyser, but do want to get our water checked, especially inside the house. Hopefully, we can get the kit and send a sample from California.

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1 reply
n4seth | @n4seth | Jan 7, 2023
In reply to @annagh "Thank you for this information about the lab in Pittsburgh. We also have a well, on..." + (show)
@annagh

Thank you for this information about the lab in Pittsburgh. We also have a well, on the same aquifer as the water being "stolen" by Crystal Geyser, but do want to get our water checked, especially inside the house. Hopefully, we can get the kit and send a sample from California.

Jump to this post

Good luck! The lab in Pittsburg was wonderful to work with. I also use a medical grade shower head from Aqua-Tools. Phone-617-0398-2497. After being diagnosed and undergoing treatment for 13 months I often wondered if anyone is ever "cured". I have now been MAC free for over a year and keeping my fingers crossed. Hope you do as well!
Nancy

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1 reply
nana43 | @nana43 | Jan 8, 2023
In reply to @n4seth "Good luck! The lab in Pittsburg was wonderful to work with. I also use a medical..." + (show)
@n4seth

Good luck! The lab in Pittsburg was wonderful to work with. I also use a medical grade shower head from Aqua-Tools. Phone-617-0398-2497. After being diagnosed and undergoing treatment for 13 months I often wondered if anyone is ever "cured". I have now been MAC free for over a year and keeping my fingers crossed. Hope you do as well!
Nancy

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Hey Nancy!
What does the medical grade showerhead do exactly? Also, the number you provided has too many digits.
Thanks!
Dee

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n4seth | @n4seth | Jan 8, 2023

Sorry about that. The correct number is 617-398-2497. I decided to try the filters based on the information in Dr. Falkinham's paper, Reducing Exposure to Nontuberculous Mycobacteria (NTM), revised in November, 2019. This paper has been posted on the Mayo Connect site. Falkinham suggests that medical grade filters (e.g. Pall Medical and Aqua Tool) have been tested and shown to prevent the passage of NTM. Although in a medical setting these filters are changed every month, I change mine every 3 months. I have had my water tested twice by the Pittsburg lab and both times it has tested posted for different NTM. Since NTM are everywhere all the time, I understand that the best defense is a healthy immune system; however, I will do whatever I can to help myself remain MAC free. Hope this helps! Nancy

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clynnford | @clynnford | Jan 13, 2023

What is to be done if MAC is found in house water, will osmosis or whole home water filtering rectify the issue?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 13, 2023
In reply to @clynnford "What is to be done if MAC is found in house water, will osmosis or whole..." + (show)
@clynnford

What is to be done if MAC is found in house water, will osmosis or whole home water filtering rectify the issue?

Jump to this post

The short answer to the question is no - only point of use filtration at the .2 micron level removes mycobacterium. In fact, system filters can actually provide a place for the NTM to grow. In addition, if you remove the NTM with a whole house filter, but the water sits in your pipes & taps which are already contaminated, it will pick up bacteria.
Sue

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