It's been awhile since I've been on. So appreciative that others share their LPR experiences. I started this forum because LPR is so little understood. My Drs to this day say very little to me.
An update on my status: As you know in July 2009 I woke up one morning with severe unbearable pain of LPR. I didn't know what it was and spent 5-6 months trying to get help. I had a fundoplication in May 2010 after months of horrific pain, trying PPIs of all kinds and developed pnuemonia from the purple pill.
I came out of surgery and moved due to a retired and layed in bed in horrific pain, losing 30 lbs in 5 lbs. The whole time my original Drs thought there was nothing else they could do for me. But alas, I could not live in horrible pain. So I went about establishing new Drs. What a joke. They all looked at me like I was crazy. Sent me to a psy. They didn't believe me. I begged for help. They finally got me a ENT. He scoped me and founs that I was burned to a crisp and wanted to do a biopsy right away. Had the biospy in Feb 2011. Still in horrible burning throat pain. I thought I would slowly wither away. I know I couldn't bare the pain. In or around Feb 2011 I started on medical probioitics which gave me more relief than Carafate or PPIs. In fact the PPIS and medications seems to make me worse.
I limped along from Feb 2011 to Sept 2011 waiting for my local GI and regional GI to make up their minds if they would send me to an outside research center. They decided that they didn't know what I had and that they were not going to send me out to any research hosipital. They said there was not much more they could do for me.
It was devasting. I had no where to turn. I came home and went on the computer. By now I knew that my upper UES spinchter was the primary problem. The LES is slightly loose but its the UES that should be closing off the acid vapor and its not.
When I went into web research in Aug 2011 I put in "what strengthens muscles" and up popped a few articles on Vitamin D. The more I read the more I thought it could give me some relief. I knew the LES spinchter was a small muscle sof the esophogus. So I immediately shot an email to my primary to have a D test waiting for me at the lab. She did as I asked. I never gave her a reason. I just asked for it.
Then I studied the best D to take. My research seemed to indicate D3. I ordered it but did not take it till I had my test done.
My test came back 25. Really not as bad as some people's score. But still low. At that time the D test said that below a 30 score is deficient. In the spring of 2012 the D scoring was changed by the Federal agency that does that, to say that a score of 20 or above is "within" normal.
But this all got me to thinking...I had just been in the sun for 5 months learning to swim for the first time in 30 years. I had avoided the sun for 30 years since the early '70s. We were told by media that the sun was bad and to stay out of the sun. I believed it and think that there is a constellation of things that come together with LPR and I think low sunshine exposure due to our working inside alot, the latitude of where we are on the planet, the color of our skin, our weight, and our age all play into the amount of D we need.
I've researched it extensively.
My primary never told me to take D after the test came back. I wrote her and asked her, what should I do? My D is low. She advised "Like any other women you should take 2,000 IU of D a day."
I studied that further and read that intake of D so be based on weight, age, latitude on the planet, color of the skin, and age and of course time of the year.
I felt that I should take 1,000 IU of D3 hormone per 25 lbs weight. I have improved the pain of LPR significantly with D3 based on 1,000 IU for every 25 lbs weight. Its not a cure but significanely improvement.
The GI's told me they would not be seeing me anymore as there was nothing more they could do for me. So I see the ENT for a scope every 6 months. He gives me no advise. I have to really dig to get out of him how my throat looks. He says the spot that he biopsied is completley healed but that my throat is still red. I personally don't see tons of mucous like before. I still have some white acid burns on the throat but I'm not in horrible pain anymore. I just have flare ups when I eat something I shouldn't like coffee, onions, tomatoes, garlic or acidity things like lemons/oranges. I also stay away from nitrates and can only take acetomphen for pain. I can't take most medications as they burn me to death.
So I continue to hope that someday a procedure comes out to stengthen the LES and UES even more. The Vitamin D hormone has saved my quality of life. Please continue to let us know what things have helped you. I'm looking for ward to spring. And I'm thinking of taking two vacations in the winter, one in Dec and one in Feb to the equator area to get sun. There is something about the sun that makes my LPR fade away along with supplementing D3 hormone. I'd rather take D3 hormone than dangerous PPIs. Shutting down our proton pumps can lead to serious infections as the acid in our stomach kills off 50% of the viruses/bacteria that enter our system. I take Canadian Gaviscon as it has no aluminum and also a Tums on occasion. So far I'm doing better with my treatment than with the Drs medications.
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It's been awhile since I've been on. So appreciative that others share their LPR experiences. I started this forum because LPR is so little understood. My Drs to this day say very little to me.
An update on my status: As you know in July 2009 I woke up one morning with severe unbearable pain of LPR. I didn't know what it was and spent 5-6 months trying to get help. I had a fundoplication in May 2010 after months of horrific pain, trying PPIs of all kinds and developed pnuemonia from the purple pill.
I came out of surgery and moved due to a retired and layed in bed in horrific pain, losing 30 lbs in 5 lbs. The whole time my original Drs thought there was nothing else they could do for me. But alas, I could not live in horrible pain. So I went about establishing new Drs. What a joke. They all looked at me like I was crazy. Sent me to a psy. They didn't believe me. I begged for help. They finally got me a ENT. He scoped me and founs that I was burned to a crisp and wanted to do a biopsy right away. Had the biospy in Feb 2011. Still in horrible burning throat pain. I thought I would slowly wither away. I know I couldn't bare the pain. In or around Feb 2011 I started on medical probioitics which gave me more relief than Carafate or PPIs. In fact the PPIS and medications seems to make me worse.
I limped along from Feb 2011 to Sept 2011 waiting for my local GI and regional GI to make up their minds if they would send me to an outside research center. They decided that they didn't know what I had and that they were not going to send me out to any research hosipital. They said there was not much more they could do for me.
It was devasting. I had no where to turn. I came home and went on the computer. By now I knew that my upper UES spinchter was the primary problem. The LES is slightly loose but its the UES that should be closing off the acid vapor and its not.
When I went into web research in Aug 2011 I put in "what strengthens muscles" and up popped a few articles on Vitamin D. The more I read the more I thought it could give me some relief. I knew the LES spinchter was a small muscle sof the esophogus. So I immediately shot an email to my primary to have a D test waiting for me at the lab. She did as I asked. I never gave her a reason. I just asked for it.
Then I studied the best D to take. My research seemed to indicate D3. I ordered it but did not take it till I had my test done.
My test came back 25. Really not as bad as some people's score. But still low. At that time the D test said that below a 30 score is deficient. In the spring of 2012 the D scoring was changed by the Federal agency that does that, to say that a score of 20 or above is "within" normal.
But this all got me to thinking...I had just been in the sun for 5 months learning to swim for the first time in 30 years. I had avoided the sun for 30 years since the early '70s. We were told by media that the sun was bad and to stay out of the sun. I believed it and think that there is a constellation of things that come together with LPR and I think low sunshine exposure due to our working inside alot, the latitude of where we are on the planet, the color of our skin, our weight, and our age all play into the amount of D we need.
I've researched it extensively.
My primary never told me to take D after the test came back. I wrote her and asked her, what should I do? My D is low. She advised "Like any other women you should take 2,000 IU of D a day."
I studied that further and read that intake of D so be based on weight, age, latitude on the planet, color of the skin, and age and of course time of the year.
I felt that I should take 1,000 IU of D3 hormone per 25 lbs weight. I have improved the pain of LPR significantly with D3 based on 1,000 IU for every 25 lbs weight. Its not a cure but significanely improvement.
The GI's told me they would not be seeing me anymore as there was nothing more they could do for me. So I see the ENT for a scope every 6 months. He gives me no advise. I have to really dig to get out of him how my throat looks. He says the spot that he biopsied is completley healed but that my throat is still red. I personally don't see tons of mucous like before. I still have some white acid burns on the throat but I'm not in horrible pain anymore. I just have flare ups when I eat something I shouldn't like coffee, onions, tomatoes, garlic or acidity things like lemons/oranges. I also stay away from nitrates and can only take acetomphen for pain. I can't take most medications as they burn me to death.
So I continue to hope that someday a procedure comes out to stengthen the LES and UES even more. The Vitamin D hormone has saved my quality of life. Please continue to let us know what things have helped you. I'm looking for ward to spring. And I'm thinking of taking two vacations in the winter, one in Dec and one in Feb to the equator area to get sun. There is something about the sun that makes my LPR fade away along with supplementing D3 hormone. I'd rather take D3 hormone than dangerous PPIs. Shutting down our proton pumps can lead to serious infections as the acid in our stomach kills off 50% of the viruses/bacteria that enter our system. I take Canadian Gaviscon as it has no aluminum and also a Tums on occasion. So far I'm doing better with my treatment than with the Drs medications.
eewright
February 1, 2013 - 8:27pmThis Comment
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