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NTM/MAC/MAI: We must advocate for ourselves

MAC & Bronchiectasis | Last Active: Sep 17, 2022 | Replies (145)

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@katemn

@mac47 and @windwalker, Terri, I had just a few minutes so went back on my File Cabinet and found the below .. hope it helps! Hugs! Katherine

I personally have chosen to install the 0.2 micron filters shower heads .. they are costly and must be changed frequently so it is on a shower that only I use. I posted on the Forum how to purchase them if anyone is interested. They are the expensive "0.2 micron filters shower heads" for my shower that I have to replace monthly .. the name of the product is: Kleenpak™ Disposable Shower Head Filter.

BUT see the below:

1. You CANNOT prevent MAC/MAI .. the best thing written I've seen I put in my File Cabinet:

I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)
PLUS from Dr Aksamit Mayo Clinic:

FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)

(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom...maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09
@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

From one of our members: I got ONE of my mycobacterium (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live.
p.s. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!

NOTE: I saw Dr. Dulohery today .. good appt. As I have the energy I will say more .. BUT good info. She said to watch http://conference.thoracic.org/ for good information on new research on drugs being tried out for our diseases. Let's check it out and share anything we can find out! She is going to be attending .. hope she brings back good information for all the Mayo Team!Hugs! Katherine

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Replies to "@mac47 and @windwalker, Terri, I had just a few minutes so went back on my File..."

Hi Katherine. I live in an apt with two bathrooms and I have been only used one shower. I am thinking of using the unused shower, but I am scared of MAC and legionnaires and other bugs, which may be present. Aside from wearing an N95 mask, removing the showerhead and turning on the exhaust fan, how else can I protect myself? The filters that you use, what are they called and where did you buy them?
Thanks.
J