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Please Share your MAC and Bronch Success Stories - However Small

MAC & Bronchiectasis | Last Active: Apr 22 1:49pm | Replies (66)
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@n4seth

I am keeping my fingers crossed that I may be a success story! After being on the Big 3 for a year I tested positive on my 12th culture, however, the next two cultures were negative so it is possible that my one sample was contaminated. Both my infectious disease doctor and pulmonologist have released me from care after a stable CT scan. I understand that our best defense is a healthy immune system and that MAC or another nasty bacteria may get me again but in the meantime, I'm feeling great and planning on enjoying life without drugs and without MAC. I am doing everything I can to avoid reinfection including medical grade shower heads, boiled water for my Netti pot, a SteriPen, and masks for gardening. This group has been a wonderful source of support and information and I hope my contribution for people is to know that there is hope! Thank you all!

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Replies to "I am keeping my fingers crossed that I may be a success story! After being on..."
Sue, Volunteer Mentor | @sueinmn | Sep 16, 2021

Hi Seth - Are you using a saline neb? I am convinced that it has contributed to my success in staying almost completely infection free for 20 months. (One small exacerbation this spring, treated with nebs and prednisone.) I think there are others here who are seeing similar success, such as @thumperguy.

For the past 6-7 years, before the Big 3, I was suffering 2-3 major lung infections per year, with antibiotics and months of asthma attacks. For 20 months, I have stayed healthy in spite of regular exposure to little germ factories (aka grandchildren.)

I got a rainfall (big droplet) showerhead and wear my mask and gloves faithfully around the garden. But I do not boil my water - I was again encouraged that this is not always necessary by Dr Falkinham's latest article post by Armando (@bolso1) today here:https://connect.mayoclinic.org/discussion/reducing-exposure-to-nontuberculous-mycobacteria-ntm/?pg=1#comment-636005

Here's hoping you too will be a success story for a long time!
Sue

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thumperguy | @thumperguy | Sep 16, 2021

Seth, fingers crossed for you. I’m almost two years flare-up free with all credit going to nebbing 7% saline solution. 7% seems to go where others “fear to tread” Don

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lora jo | @ljfoo | Sep 17, 2021

So glad to hear about your success story! Can you say more about medical grade shoer heads? Where do you buy them? What brand did you get?

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