1. < MAC & Bronchiectasis
Mentor

You can feel better!

Posted by Terri Martin, Volunteer Mentor @windwalker, Jun 4, 2018

Hello. I thought I would post this pic today to hopefully inspire others to keep plodding along with your treatments whether they be antibiotics or taking a natural approach. Never give up on regaining your health! I just finished an hour long bicycle ride. There have been many years where this was an impossibility. There were many years where I couldn't walk 20 feet without sitting to catch my breath. I am welcoming all other success stories.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

america | @america | Jul 18, 2018

Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.

REPLY
10 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2018
In reply to @america "Hi Terri, I was just reading through so much stuff! I have not been on any..." + (show)
@america

Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.

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@america, Hi Rita. I am right there with you on the low energy scale. I spent the last two days in jammies, on my couch watching movies. That is so not me, but I roll with it. Some days I have some energy, some days - not so much. (Hot humid weather is slowing me down). I am glad that you are taking the time to read through past posts. Will you be seeing Dr.Leventhal at the Mayo?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2018
In reply to @brigby "@windwalker Hi Teri, Thank you for the encouragement. I should also report how thankful and grateful..." + (show)
@brigby

@windwalker Hi Teri, Thank you for the encouragement. I should also report how thankful and grateful to God I am that right now I am experiencing a period of good health and I am able to walk on the beach and even body surf!

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@brigby You just brightened my day! It is good to hear that some of us with mac are living a good life still. I used to body surf for hours on end; back in the day. We have more sharks these days so I longer go in the ocean. (We had 8 shark bites last year and a recent serious bite last month). Seize and enjoy the time now while you are feeling good. Hugs, Terri

REPLY
heathert | @heathert | Jul 18, 2018
In reply to @america "Hi Terri, I was just reading through so much stuff! I have not been on any..." + (show)
@america

Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.

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Hi Rita @america I hope all goes well for you at Mayo. I am about to go off the big 3 after 3.5 years. Can you please update us on what your Mayo doc suggests to do now. I am from NZ and we seen to be a bit behind. Heather

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jameck | @jameck | Jul 18, 2018
In reply to @windwalker "@jameck Jane, are you doing the nebulized sodium chloride by any chance?" + (show)
@windwalker

@jameck Jane, are you doing the nebulized sodium chloride by any chance?

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@windwalker I am not. Should I be?

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america | @america | Jul 18, 2018
In reply to @america "Hi Terri, I was just reading through so much stuff! I have not been on any..." + (show)
@america

Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.

Jump to this post

Hi Terri, I will be seeing dr Leventhal! 🙂

REPLY
america | @america | Jul 18, 2018
In reply to @america "Hi Terri, I was just reading through so much stuff! I have not been on any..." + (show)
@america

Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.

Jump to this post

Hi Heathert, I will give you all the updates when I see him in September! I am looking forward to seeing dr Leventthal at Mayo!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2018
In reply to @windwalker "@jameck Jane, are you doing the nebulized sodium chloride by any chance?" + (show)
@windwalker

@jameck Jane, are you doing the nebulized sodium chloride by any chance?

Jump to this post

@jameck I would if I were you. The 7% sodium chloride is inhaled saline (salt). It is good for lung hygiene and keeps the 'cooties' from wanting to live in them. You don't seem to be very ill yet from this disease; doing the nebulized saline may very well keep you from getting sicker. My doctor is a big proponant for it and so am I. @alleycatkate has posted an article recently about it's use. Click on her @name and you will see her posts.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 18, 2018
In reply to @america "Hi Terri, I was just reading through so much stuff! I have not been on any..." + (show)
@america

Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.

Jump to this post

@america Yay! You will love him. I do!

REPLY
Brenda R. | @brigby | Jul 22, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

Jump to this post

@jameck Hang in there and take lots of deep breaths. I was finally diagnosed in 2015 and like you, I have periods of sickness and along with that, fear. When I was so sick, coughing blood, etc., I would NEVER have believed I would ever again experience improvement and enjoy physical activity and a nearly normal life as I am right now. For me, prayer, water, nebulizer, daily inhaled steroid and antibiotic, and exercise are the keys. Get to a doctor that treats Bx and NTM. Prayers for us all.

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