Have you had your water tested?
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.
I hope this thread is still active. Am very concerned about MAC and other bugs in our environment. The MUSC conference was very helpful. Does anyone know how I could contact Dr. Dornan’s office? I want to know more about what to do with an unused shower? I want to use it, but I want to know how to do it safely (wear N95 respirator, remove the showerhead, turn on exhaust fan).
I think you might find the answers you need on the discussions here or at ntmir.org - I am not sure you can contact the presenters from the MUSC NTM conference individually for consultation.
There is a lot of information if you go to the search box and put in your key words. For more suggestions, please click on the link to the right "Tips on How to Use the Site" or on the HTM site.
Sue
Hello Group, I thought I posted this on this thread and couldn't find it. I just sent away for this water testing kit:
https://mytapscore.com/products/mycobacterium-water-test
I didn't do a deep dive into their legitimacy but from reading through their supporters I felt confident. anyway, I will let you know what I find out in a couple of months.
In the meantime, I am boiling my water and drinking it through a LifeStraw bottle.
I just ordered a test kit. I'll keep everyone updated.
I just got my water test results back. My kitchen plumbing has no MAC. I've been told the water in my community is excellent. I guess I'll believe them.
Just ordered from my tap score, as well - $369.15. Fingers crossed results in 6-8 weeks!
Is this price, $369.19, for testing one water source or multiple?
One water.
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
If you have GERD (gastro esophageal reflux) you are at risk of contents coming up from your stomach and being aspirated. Then you need to be really concerned about MAC in water. Most research-based recommendations regarding MAC in drinking water say bottled spring water is generally safe, but water bottled from municipal sources may not be.
Some people prefer to boil their drinking water (to be safe you would need to per-boil water used for coffee, tea, reconstituting frozen juice and making ice cubes as well.) I guess I am more of a risk taker, as I choose not to boil water, and it has worked for me so far. My ID doc doesn't believe in it as a high-risk, high-reward thing to do - he is more worried about me being safe when gardening (mask & gloves) & staying out of hot tubs (lots of steam/vapor to inhale.) My pulmonologist says "You don't have any evidence of GERD, so only do it if you feel like you need to."
I do however, keep my equipment scrupulously clean, including my nebulizer, Aerobika, etc. And I rigorously scrub reuseable water bottles & mugs with a brush, water and bleach weekly to keep the biofilm that can harbor MAC from getting a toehold in them.
So, you will get a range of opinions here about boiling water - from my method (I don't) to people who even use boiled water to cook in and brush their teeth, and won't drink water in a restaurant. It is all a matter of what level of precautions make you comfortable.
Sue
Sue