About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (176)

Jul 9, 2018 · cleaning/rinsing aerobika and nebulizer in MAC & Bronchiectasis

About a year ago I asked the following question on this forum: must you use boiled or distilled water when cleaning and rinsing the aerobika and nebulizer? Many responded that it was necessary to use boiled water while others stated that they do not. Someone recently informed me that she asked her dr from Mayo this specific question and the doctor responded that mac does not live on dry plastic and thus it would not be necessary to use boiled water for cleaning and rinsing. Many months ago when I asked Dr. Falkinham, a highly respected microbiologist; I believe that he answered that it would be prudent to use boiled water. I just re-emailed Dr. Falkinham to make certain that he indeed does think this is necessary. For those of us who use boiled water, what do you do when traveling? What have others heard from their doctors about this? What do many of our members do?
Looking forward to reading the responses and thank you. Terry

Jun 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@nick52 Could you please elaborate on how much you use and how you prepare the ginger. Please make it a recipe for "how to prepare ginger for dummies"! Thank you.

May 15, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

What about swimming in well water or salt water pools? More and more pools have well water or salt water — hopefully much safer for us. Anyone know anything about these possibilities?

Apr 26, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker Thank you. Nice summary. IF anyone has anything to add, it all is appreciated. Anybody out there have the filters for the shower??

Apr 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lindam272, Yes thank you. It is always helpful to know what others are doing. I am following the same script. Good to make sure that we aren't going too nuts about certain sacrifices. I cringe if I have to take showers and go thirsty in restaurants if no bottled water available. I think I need to chill and just shower when not at home and drink that occasional water at a restaurant without guilt..

Apr 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker, Please list all the precautions that you follow not to get reinfected. It is so helpful to see what others are doing … and not doing. Thank you. Hope that others respond as well.