1. < MAC & Bronchiectasis

MAC Reboot - After 3 Years Post Meds

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Nov 24, 2019

Hello Group, I am glad I found you. Well, here I am again... with a reboot of MAC. Just finished my sputum tests on Monday and they called me Thursday! The CT scan was pretty evident and the sputum confirmed that it is back. After 3 years off the meds. Disappointing and (secretly) scary. However, I find a lot of comfort in knowing that it isn’t lung cancer. I smoked for about 30+ years and I have always had my lungs checked since I quit 15 years ago. That’s how we found it the first time. Anyway, like most of you have already experienced, the medication was so difficult. 18 months and I stayed faithful to taking it. I had come across another website chat group when I was contemplating go off the meds early because I just couldn’t take it anymore. Several people were discussing doing the same. I am so thankful that some of the members stressed not to go off the meds and to stick it out until the end. One member went off near the end of her time and it came back quickly. After I read that I was determined to go all the way to the finish line. And I did. I think I know why it came back and going forward I will be more careful in the environments I find myself in (I am an equestrian and spend a great deal of time in dusty, dirty barns - not always wearing a mask.) Anyway, I just wanted to say hello and give my words of encouragement to anyone who is struggling and to say thank you for all the wonderful tips and kindness you show every day. We can get through this and like I always like to say: Team work makes the dream work!

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

Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 28, 2019
In reply to @thumperguy "Teri, Do you do anything explicitly to counteract the negative impact of antibiotics on your gut..." + (show)
@thumperguy

Teri, Do you do anything explicitly to counteract the negative impact of antibiotics on your gut microbiota?

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Not Terri, but yes, probiotics daily and live culture yogurt. And fresh sauerkraut, the fermentation juice is also a source of good bacteria. It keeps me at a lower level of gut issues - I can tell right away if I skip a few days. I have been on the Big 3 for over 18 months - daily for the past 4 months.

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1 reply
heathert | @heathert | Nov 28, 2019
In reply to @sueinmn "Not Terri, but yes, probiotics daily and live culture yogurt. And fresh sauerkraut, the fermentation juice..." + (show)
@sueinmn

Not Terri, but yes, probiotics daily and live culture yogurt. And fresh sauerkraut, the fermentation juice is also a source of good bacteria. It keeps me at a lower level of gut issues - I can tell right away if I skip a few days. I have been on the Big 3 for over 18 months - daily for the past 4 months.

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@thumperguy Also Kombutcha drink is full of probiotics and yummy.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2019
In reply to @thumperguy "Teri, Do you do anything explicitly to counteract the negative impact of antibiotics on your gut..." + (show)
@thumperguy

Teri, Do you do anything explicitly to counteract the negative impact of antibiotics on your gut microbiota?

Jump to this post

@thumperguy, No, I am not good about putting probiotic flora back into my gut. I sometimes do it with Kefir milk. I do not have any symptoms or problems with my stomach at all. I guess that is why I do not do it as often as I should. I love sauerkraut, so I may make a batch or buy some. That's what is so good about checking in on this site often; we get reminders to take better care of ourselves.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2019
In reply to @gj53 "Terri, Hello and Happy Thanksgiving! I am new to MAC and this forum and the information..." + (show)
@gj53

Terri, Hello and Happy Thanksgiving! I am new to MAC and this forum and the information has helped tremendously. I just recently received my diagnosis but am presently on no meds. I feel I am doing pretty well. I just received a percussion vest and nebulize twice daily. I have a complication of colitis so am very nervous about taking any antibiotics. I have a follow up appointment with my pulmonologist this Monday and have many questions after seeing all the precautions that everyone takes. My doctor did not cover anything like the gardening, hot tubs etc. It seems logical to me that this is a disease that could easily reoccur since as you said the circumstance to get it has not changed. Your information is always helpful. THank you for that.

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@gj53, Hi there! I am finally over my turkey coma. I hope you had a good Thanksgiving. We spent ours with friends as we have no family in the area. I am not surprised that your dr didn't give you precautions to take with this infection. (do you also have bronchiectasis?) None of my drs ever did, including my wonderful doc at Mayo. They usually just diagnose and treat. That is why this site is so vital to us. I am surprised that you were put on a percussion vest as you are not ill enough to be on a treatment plan. Did they do that as a preventative measure? Will you report back to me after your appt on Monday? I hope that visit goes well for you.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 29, 2019
In reply to @windwalker "@thumperguy, No, I am not good about putting probiotic flora back into my gut. I sometimes..." + (show)
@windwalker

@thumperguy, No, I am not good about putting probiotic flora back into my gut. I sometimes do it with Kefir milk. I do not have any symptoms or problems with my stomach at all. I guess that is why I do not do it as often as I should. I love sauerkraut, so I may make a batch or buy some. That's what is so good about checking in on this site often; we get reminders to take better care of ourselves.

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Hi Teri - My nutritionist niece recommends homemade or like-homemade from a specialty grocery or meat market because many of the cans and jars in the supermarket are pasteurized and a lot of the fermentation bacteria are killed by the temperature. Besides the fresh stuff tastes a lot better...

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1 reply
thumperguy | @thumperguy | Nov 29, 2019
In reply to @sam33 "I have not, but I plan to do some research! I’ll post what I find." + (show)
@sam33

I have not, but I plan to do some research! I’ll post what I find.

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Feed those microbes lots of dietary fiber from fruits and vegetables and they’ll treat ya right.

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Nov 30, 2019
In reply to @sam33 "I, too, have done the horse thing my whole life. Oddly, practicing as a vet really..." + (show)
@sam33

I, too, have done the horse thing my whole life. Oddly, practicing as a vet really ate in to the time for that. Now this...I’m at the beginning of the journey and will be finding out after scan New Year’s Eve if any of the alternative stuff I’m doing helps. If so, I’ll be shouting to the rooftops, so you will know. Yes, horses are a glimpse of heaven...

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Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it seems and I have mad respect for all of you. My horse, the one in the picture above died last January. He was recovering from an olecranon green stick fracture. He did so great! I had been rehabing him and was set to turn him out and he coliced so bad this time that euthanasia was the only right thing. Devastating. Still is. Do you see a Naturopath for your alt treatment? Please, keep us posted after you get your scans. I would love to hear how you are doing. Take care! Carolyn

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2 replies
BlueSplashGirl/ Carolyn | @bluesplashgirl | Nov 30, 2019
In reply to @sam33 "I, too, have done the horse thing my whole life. Oddly, practicing as a vet really..." + (show)
@sam33

I, too, have done the horse thing my whole life. Oddly, practicing as a vet really ate in to the time for that. Now this...I’m at the beginning of the journey and will be finding out after scan New Year’s Eve if any of the alternative stuff I’m doing helps. If so, I’ll be shouting to the rooftops, so you will know. Yes, horses are a glimpse of heaven...

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I sent you a post sam33 and now I don’t see it... let me know if you didn’t get it and will resend. Thank you! Carolyn

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Nov 30, 2019

Everybody hang in there! We can do this! Thanks for all your information, concern, comments and care.

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sam33 | @sam33 | Dec 1, 2019
In reply to @bluesplashgirl "Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it..." + (show)
@bluesplashgirl

Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it seems and I have mad respect for all of you. My horse, the one in the picture above died last January. He was recovering from an olecranon green stick fracture. He did so great! I had been rehabing him and was set to turn him out and he coliced so bad this time that euthanasia was the only right thing. Devastating. Still is. Do you see a Naturopath for your alt treatment? Please, keep us posted after you get your scans. I would love to hear how you are doing. Take care! Carolyn

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Hi Carolyn! I was primarily small animal but since I’ve always had horses, I have worked on them as well as exotics. I hate that about your horse. They are so fragile to be so big and strong. I’m not seeing a naturopath, as they are few and far between in mississippi, but have enough interest and knowledge regarding animals that I can extrapolate. I’m a problem based learning graduate as well, so prone to self evaluation etc. I do a lot of research. Nutrition is huge, and since I’ve been taking the kyolic garlic, my gut health has improved and food sensitivities have decreased. So it can’t hurt! I will certainly report the good and the bad, and am so thankful for you and the others that want to discuss health and passions. It’s a good tribe to be part of I think. 🙂
Sandy

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