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@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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Replies to "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..."

Windwalker, I did go find an additional mouth piece and will order more. Thank you all, for these great words.
--Barb S

I will not drink while on the meds. Easier to go by the rules.
-- Barb S

Katherine - where do you get your water tested?
Thanks - Barb S

@bschaper2, upon being diagnosed with NTM, my pulmonologist said I could take the 3 drugs however I wanted, but to find the best way for myself and be consistent with when I take them. He then told me about several of his patients with NTM and their experiences with taking the 3 drugs. I was to find what worked best for me.

@bschaper2, Barb, I have just ASSUMED all home water has mycobacterium .. cannot find an actual test for home testing. Anyone else want to jump in? Hugs! Katherine

But from my File Cabinet:
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_12?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF
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!! (1. iSpring CU-A4 - US Legendary - 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System with No-pressure Chrome Faucet https://smile.amazon.com/iSpring-CU-A4-Ultra-Filtration-Filtration-No-pressure/dp/B009AEJWZG/ref=cm_cd_al_qh_dp_t 2.Kingston Brass Concord KS8198DL+ Single Handle Lead-Free Water Filtration Faucet, Satin Nickel https://smile.amazon.com/Kingston-Brass-KS8198DL-Lead-Free-Filtration/dp/B004KPL1BS/ref=cm_cr_arp_d_product_top?ie=UTF8 )

OMG! Well, I am gratefull that I am in their system and seen on a regular
basis. I am sorry that you are having a tough time getting in; keep calling and
ask about any cancelations. Keep trying because you never know if they hire more
doctors in the near future to fill the demand.
 

@katemn Katherine, I don't follow all of the messages in this thread, there is such an abundance of them and since it is not something that is a problem for me I can't take the time, but I occasionally check them out.
This post is scary! This could be in my water and coming out in the shower? Around here the only concern in the water I have heard about prior to this is radon. I live in NH, the "granite state" and many homes are built on top of granite. Somehow that gives off radon. If in your water radon can be really harmful when aerated, as in cause cancer. It can also be in the air in your home. Expensive procedures must be undertaken when it is found.
So now I have another concern. I will need to get our water checked for this. This "MAC/MAI" sounds miserable.
Thanks for the info.
JK

@contentandwell, JK .. as the saying goes "Forget about it!". You can ALSO be struck by lightening .. get run over by a kangaroo .. who know all the catastrophes that can befall us! MAC/MAI is JUST one of them .. AND you would be well aware of it if it were to befall you .. WHEN you are advised of .. AFTER an Xray or SOMETHING shows up medically. Until that time .. STOP worrying about it! The MOST important thing you can do is stay healthy .. eat right .. exercise and stay serene! Hugs to you! Katherine

From 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. p.s. from Katherine .. 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!)

JK, NH is one of the 'hot beds' for MAC, so just be on the lookout for
it.
 

@bschaper2 Happy
4th Barb! How are you doing these days? I am doing pretty good. Just finishing
up two hrs of breathing treatments. Then, will go prepare food for company this
afternoon. I hope today finds you happy and breathing well.  - Terri
M.