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  1. #1
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    Default Probiotics ? No Thanks..

    Some good info in this article:

    https://recoveringkids.com/2017/10/16/probiotics/
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Probiotics ? No Thanks..

    I just remembered that I was drinking a lot of a specific probiotic drink the Summer I had my first flare-up. I don't even know what to think of this. I'm hoping it was just a coincidence but now I have a reason to just ignore all these gimmickey drinks.

    Thanks for sharing

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    Default Re: Probiotics ? No Thanks..

    Another warning against probiotics. Please read

    https://www.sciencedaily.com/release...0806095213.htm
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Probiotics ? No Thanks..

    Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with terrible acid reflux for several years. I have suffered a great deal because of reflux. To make it even worse I have an atypical version of reflux that is not well understood and treatments do not work well for.
    Just a couple of months ago I was on the verge of getting surgery that is very invasive and life altering. I would not be able to enjoy a simple meal ever again after having the surgery. After surgery I would be on a liquid diet for six weeks. And mush food after that.

    Probably due to aspiration of aerosol reflux I developed pneumonia and was in the hospital for a solid week getting IV antibiotics recently. Very early in my hospital stay I noticed that I was not having reflux trouble. This was a great blessing as it is very hard for me to follow my reflux diet in the hospital. It was also hard to believe. I had suffered EVERY day for over a year and now it was like I never had reflux.

    After I got out of the hospital (about three weeks ago) I expected reflux to return but it has not. After further thought I realized this was not a big surprise.

    During my search for answers to my reflux (trying to avoid surgery) I found a book called The Fast Tract Diet - by Norm Robillard. I found this book to be more helpful than any of the medications I took.
    The basic idea of the book is that atypical reflux (also know as LPR) can be improved by a LOW carbohydrate diet. The theory is that a high carb diet feeds bacteria in the small intestine that produce hydrogen and methane . This abundance of gas creates a back pressure that pushes on the valve right above the stomach and forces 'toxic' gas into the airways. The guy that came up with the idea, Norm Robillard, is a microbiologist who figured this out on his own after a brief diet that was low carb and helped HIS LPR. He asked himself "Why did low carb help my reflux?" and this is where his theory came from .

    He mentions in the book that SOME people have had reduced symptoms after a course of antibiotics. The antibiotics wipe out the gas causing bacteria. Of course no one can, or should, keep doing antibiotics.

    Probably LPR is caused by a number of factors like a poorly functioning lower esophogeal sphincter , poor motility, a distorted, unhealthy micro biome, and who knows what else. Changing the micro biome with diet has helped LOTS of people. There is a great facebook group of people who follow the diet and share experiences.

    The reason I talk about all this is to encourage people to keep thinking about their own situation. If I had followed only my doctors advice I would have had surgery by now and likely STILL be suffering - as does happen to some people. After I found the diet was helping me I asked my gastroenterologist "I have been seeing gastroenterologists for over four years. How is it that NO one have ever talked to me about diet?"
    His answer "We are not trained in that". It did not seem to bother him that I had suffered SO much and could have been helped by trying a change in diet. He did NOT want to know the name of the book that helped me. He will NOT be telling ANY of his patients about it so they could try it. HE IS NOT TRAINED IN THAT!!

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    Default Re: Probiotics ? No Thanks..

    Quote Originally Posted by me2 View Post
    Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with terrible acid reflux for several years. I have suffered a great deal because of reflux. To make it even worse I have an atypical version of reflux that is not well understood and treatments do not work well for.
    Just a couple of months ago I was on the verge of getting surgery that is very invasive and life altering. I would not be able to enjoy a simple meal ever again after having the surgery. After surgery I would be on a liquid diet for six weeks. And mush food after that.

    Probably due to aspiration of aerosol reflux I developed pneumonia and was in the hospital for a solid week getting IV antibiotics recently. Very early in my hospital stay I noticed that I was not having reflux trouble. This was a great blessing as it is very hard for me to follow my reflux diet in the hospital. It was also hard to believe. I had suffered EVERY day for over a year and now it was like I never had reflux.

    After I got out of the hospital (about three weeks ago) I expected reflux to return but it has not. After further thought I realized this was not a big surprise.

    During my search for answers to my reflux (trying to avoid surgery) I found a book called The Fast Tract Diet - by Norm Robillard. I found this book to be more helpful than any of the medications I took.
    The basic idea of the book is that atypical reflux (also know as LPR) can be improved by a LOW carbohydrate diet. The theory is that a high carb diet feeds bacteria in the small intestine that produce hydrogen and methane . This abundance of gas creates a back pressure that pushes on the valve right above the stomach and forces 'toxic' gas into the airways. The guy that came up with the idea, Norm Robillard, is a microbiologist who figured this out on his own after a brief diet that was low carb and helped HIS LPR. He asked himself "Why did low carb help my reflux?" and this is where his theory came from .

    He mentions in the book that SOME people have had reduced symptoms after a course of antibiotics. The antibiotics wipe out the gas causing bacteria. Of course no one can, or should, keep doing antibiotics.

    Probably LPR is caused by a number of factors like a poorly functioning lower esophogeal sphincter , poor motility, a distorted, unhealthy micro biome, and who knows what else. Changing the micro biome with diet has helped LOTS of people. There is a great facebook group of people who follow the diet and share experiences.

    The reason I talk about all this is to encourage people to keep thinking about their own situation. If I had followed only my doctors advice I would have had surgery by now and likely STILL be suffering - as does happen to some people. After I found the diet was helping me I asked my gastroenterologist "I have been seeing gastroenterologists for over four years. How is it that NO one have ever talked to me about diet?"
    His answer "We are not trained in that". It did not seem to bother him that I had suffered SO much and could have been helped by trying a change in diet. He did NOT want to know the name of the book that helped me. He will NOT be telling ANY of his patients about it so they could try it. HE IS NOT TRAINED IN THAT!!
    WOW, thank you so much for sharing this amazing story and your findings. I am sorry for the tough time you had and glad you found the right solution before it was too late. Thanks God you are feeling better.

    If I understand correctly it was a combination of 2 things which healed you: the low carb diet and the treatment with antibiotics ?

    In addition to WG I also suffer from collagenous colitis, and in a weired way the combination of specific nutrition plus antibiotics helps me feel better although I can't make it without budezon (a friend to pred, GI steroid, I take them both).

    And... we know too well to NEVER trust any dr. Withought checking as much as we can.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  11. #6
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    Default Re: Probiotics ? No Thanks..

    Alysia,
    Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

    I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
    It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

    I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

    Thanks for taking the time go share your experience and ideas.

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