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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..."

Barb, I'd like to add that I am not on the big three anti-biotics. If I
were, I def would NOT drink any alcohol. Like Linda said, those drugs are hard
on the liver. Mustn't over tax it.
 

Take charge girl!
 

@128128terry11t, Terry and @bschaper2, Barb Hugs to all! Katherine
From my File Cabinet:
FILTERED RERIGERATOR WATER AND ICE CUBES https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx Don’t drink from built in refrigerator tap or use ice. High numbers of NTM are in refrigerator tap water and ice. In one instance, the DNA fingerprint of the isolates from the refrigerator tap water were identical to those of a patient who drank the water. The tap water coming into the refrigerator collects in a large reservoir and the warmth of the machinery warms the water (before cooling), so the reservoir has lots of NTM.
(Katherine: I am not saying it is right or wrong but I purchased the old time ice cube trays .. fill them from my sink filtration system .. then bag them into a Hefty zip lock gallon size bag for storage. I purchased the sink filtration system:
(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 )
BUT was told 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!! BUT something is better than nothing?!)

@128128terry11t,
YOU SAID: I want to look into getting a shower head gizmo (don’t know what to call it) for my bathtub in order to wash and rinse my hair. Anyone have a recommendation? Hugs to all! Katherine

From my File Cabinet:
HAIR WASHING IN BATHTUB Several years ago I researched and purchased a kitchen sink faucet .. had a plumber install it (without the base) near the other bathtub controls. I have VERY effectively washed my hair in that manner ever since .. very happy with that method! I fold my towel on the tub edge for elbow comfort and I am good to go! (The one that worked for me: Ufaucet Commercial Stainless Steel Single Lever Single Handle Pull Out Sprayer Prep Kitchen Sink Faucets, Brushed Nickel Finished https://smile.amazon.com/Ufaucet-Commercial-Stainless-Sprayer-Finished/dp/B016I75C2Y/ref=sr_1_9?s=kitchen-bath&ie=UTF8&qid=1496861996&sr=1-9&keywords=kitchen+faucet )

@bschaper2, Barb, DO NOT give up .. they ALWAYS have cancellations! Every few days .. in a nice friendly manner identify yourself and say "I understand that you always have cancellations .. just checking .. don't want to be a nuisance but I would REALLY like to get an appointment with Dr. Jack Leventhal .. so if you don't mind I'll just keep checking in periodically for a potential cancellation!" Good Luck! Hugs to all! Katherine

@bschaper2, Barb and @windwalker, Terri .. I bought a supply so I could sterilize just once a week! Hugs to all! Katherine
FROM my File Cabinet ..I found a good price got nebulizers at: http://justnebulizers.com/catalogsearch/result/?q=p22f81cn .. I purchased the 5 package.

You never cease to amaze me with all your knowledge and years of research. Thank you beyond words, Terry

I will obey and stay away from alcohol, will miss my bloody marys, sigh. Thank you, Lindam

call in a year is what I was told, and the lady on the phone said it could be longer than a year!, thank you, Windwalker
-- Barb

I will not drink.
-- Barb