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!

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Such an awesome pic! I saw a bumper sticker once that said “ poverty is owning a horse.” That clinched it for my parents, but now in my “old age” I live next door to a horse farm and get to see them daily. I am so sorry your MAC has come back. When you get it under control and “gone” again you may want to consider a maintenance schedule of drugs. I learned that from “windwalker” Terri, our wonderful mentor, and my ID doctor was on board with it. (irene5)

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@irene5

Such an awesome pic! I saw a bumper sticker once that said “ poverty is owning a horse.” That clinched it for my parents, but now in my “old age” I live next door to a horse farm and get to see them daily. I am so sorry your MAC has come back. When you get it under control and “gone” again you may want to consider a maintenance schedule of drugs. I learned that from “windwalker” Terri, our wonderful mentor, and my ID doctor was on board with it. (irene5)

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Hello Irene! Thank you so much for the excellent tip. I will discuss that with my specialist. Also, thank you for the compliment. Yes, horses cost everything… I mean, really, everything! But, they connect my soul to earth and gives me a glimpse into heaven, as well. Take care!

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@bluesplashgirl

Hello Irene! Thank you so much for the excellent tip. I will discuss that with my specialist. Also, thank you for the compliment. Yes, horses cost everything… I mean, really, everything! But, they connect my soul to earth and gives me a glimpse into heaven, as well. Take care!

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And I would say the same about my GSD’s! God bless you real well.

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@bluesplashgirl

Hello Irene! Thank you so much for the excellent tip. I will discuss that with my specialist. Also, thank you for the compliment. Yes, horses cost everything… I mean, really, everything! But, they connect my soul to earth and gives me a glimpse into heaven, as well. Take care!

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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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@irene5

Such an awesome pic! I saw a bumper sticker once that said “ poverty is owning a horse.” That clinched it for my parents, but now in my “old age” I live next door to a horse farm and get to see them daily. I am so sorry your MAC has come back. When you get it under control and “gone” again you may want to consider a maintenance schedule of drugs. I learned that from “windwalker” Terri, our wonderful mentor, and my ID doctor was on board with it. (irene5)

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Irene @irene5 thanks for the tip — good to know you're doing this too, as well as Terri @windwalker. What meds are you taking for your maintenance schedule? Hugs and good luck, Annie

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@bluesplashgirl Hi Carolyn. So glad that you found our group; we really do help each other get through this disease. I am sorry to hear that your mac has returned. It is common for mac to return because the reason you got it in the first place hasn't changed. Most of the time the reason is having bronchiectasis, low immune system, immunodeficiency, CF, etc. Mac is usually a secondary condition brought on by a chronic primary condition. If you click on my picture icon,; my maintenance drug regimen should come up for you to read. Right now, I am on alternating monthly meds of tobramycin and ciprofloxacin. I have been on these since 2016. I know that if I go off of them for a length of time, mac or pseudomonas will probably come back. I have been doing very well in the last three yrs. My weight came back, energy improved mostly, no more coughing, and my appetite has been back. I live a lot more carefully now too. I do not get into pools or hot tubs, stay out of the stores in the winter for the most part, wash my hands a lot, avoid sick people, and I do not work in the garden soil anymore. Thank you for sharing your photo with your horse. Did you know that horses can get mac also?

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@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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@sam33 Hi there. In your years as a vet, have you ever come across a horse with mac?

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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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@windwalker

@bluesplashgirl Hi Carolyn. So glad that you found our group; we really do help each other get through this disease. I am sorry to hear that your mac has returned. It is common for mac to return because the reason you got it in the first place hasn't changed. Most of the time the reason is having bronchiectasis, low immune system, immunodeficiency, CF, etc. Mac is usually a secondary condition brought on by a chronic primary condition. If you click on my picture icon,; my maintenance drug regimen should come up for you to read. Right now, I am on alternating monthly meds of tobramycin and ciprofloxacin. I have been on these since 2016. I know that if I go off of them for a length of time, mac or pseudomonas will probably come back. I have been doing very well in the last three yrs. My weight came back, energy improved mostly, no more coughing, and my appetite has been back. I live a lot more carefully now too. I do not get into pools or hot tubs, stay out of the stores in the winter for the most part, wash my hands a lot, avoid sick people, and I do not work in the garden soil anymore. Thank you for sharing your photo with your horse. Did you know that horses can get mac also?

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

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@windwalker

@sam33 Hi there. In your years as a vet, have you ever come across a horse with mac?

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

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@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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@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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@thumperguy

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

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@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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@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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@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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