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Have you had your water tested?
MAC & Bronchiectasis | Last Active: Jan 15, 2023 | Replies (84)Comment receiving replies
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
Replies to "Sue I have started arikacey and one of the things the nurse who trained me to..."
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
Seek out some Joe Falkinham videos or talks on water and biofilm. It may answer most of your queries.
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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