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Acid Reflux / GERD Message Board

Acid Reflux / GERD Board Index

LPRsolver: Yes, I'd be happy to answer your questions. I'm happy to share. I had severe LPR...excruciating pain throughout the head, back of neck, ears, cheeks. Last year it was radiating down my arms and my legs. The vapor/gas/droplets of acid had so damaged my throat. The acid was burning through my throat nerves. It took alot of reading to understand what was wrong with me. I only had a few Drs before I moved who gave me just enough information that I put together what was wrong with me. The white mucous stuff in the throat is the throat tissue trying to protect itself. Its a horrible illness. I too was wasting away and I'm being very accurate when I state that all my Drs could say to me was that I had to live with unbearable pain. No one ever addressed pain levels. It's like being a burn patient only on the inside. It's horrible.

I haven't stopped researching for the last year 1/2. The the strongest PPIs did nothing for me except give me severe pnuemonia (30% of patients on PPIs develop pneumonia; thats why, after 4 months of being diagnoised with LPR, they sent me to fundoplication surgery. The lead surgeon did say that a fundoplication for LPR only had a 50-50% chance of working. The assistant surgeon (a thorastic specialist) said I would have a 90% chance of success. I was desperate for pain relief I went for the surgery. I came out 10x worse after surgery. It was devasting. I wasted away steadily. Lost 30 lbs not due the surgery and was wasting away. The surgery healed fine and I had no stomach problems at all. Only searing LPR pain.

Between writing desperate emails to my Drs in the old region and new region I moved after retiring (yes, I had the fundoplication 14 days before retiring and moving to a new region; it was so hard trying to not show my pain. I couldn't sit any length of time from the radiating throat pain and had to walk (through the house) to bear the searing throat pain.) I began my research when my Drs and my tests showed that the fundoplication did work but my GI just looked at me puzzled and said my acid score went from 40 to .4 and that there must be a secondary problem that they couldn't figure out. They told me I didn't have any more acid than the average person. But my clinical presentation showed I was so burned that my ENT insisted on a biopsy of my lower throat. I could barely bare the thought of anything thouching my throat I was in so much pain. The biopsy was negative. It was good news but no meds worked for me.

...but I knew from my research that LPR is both the LES and UES not closing off the throat from vapor/gas/droplets of acid. Its a very small amount, as it only burns the throat. The throat tissue is only one layer thick and the acid damages tissues and nerves that run up to the head/brain quicker than the lower esphogus. The lower esophgus is much thicker and can take the occastional reflux. The nerves are not close to the surface. But the throat nerves are in the one layer of throat and thats why the pain is so intense. It made sense. I knew if I could find something that strengthen muscles it would be worth trying as the UES/LES are muscles of the esphogus. Could it help close off the stomach?

I read extensively and somehow ran across the benefits of vitamin D when I did a web searches on what stengthened muscles. It came up Vitamin D in some of the literature. I got excited because with that bit of insight I began researching and reasoned that maybe it could work on my strengthening my LES/UES. I research the different kinds of Vitamin D. There is the Vitamin D from the sun...the best Vitamin D you can get. I was struck with the realization, as I read, that I had avoided the sun for over 40 years! I have always tried to stay out of the sun. Additionally if you live above certain latitudes one just doesn't get enough vitamin D. Vit D affects every part of the body and its functions. I read articles that indicated that many illness are caused directly by not enough Vit D and that Drs don't think about testing for it. Its not a routine test in yearly physicals or when you go in due to illnesses.

My research pointed to Vitamin D3 in liquid drops as the best assimulated. The pills don't absorb as well. Also I read that after 50 years of age the ability to make Vitamin D on the skin is reduced. (Vit D is not really a vitamin; its a hormone made on the skin by the sun.) I read also that weight affects how much Vitamin D is circulating in the blood. The fat cells attract and retain the Vit D that is meant to circulate in the blood. I read also one article that recommended taking 35 IU Vitamin D per pound of weight. I asked for a Vit D test 6 months ago. My Dr just sent me the outcomes. She never told me what to do about a low score. She answered and said to take 2,000 IU of Vit D for life. Drs just don't have the time to really study the issues patients have. Medicine seems to be only about pills not looking at the whole person.

My Vit D score was 25. I paused for a moment when I read it and realized that for the 4 months before I requested a Vit D test, that I was in the sun for the first time in 40 yeas because we just built a pool, the grandchildren were over every day and I learned to swim and was in the sun alot. Prior to April 2011 I was probably alot lower than 25. Being in the sun for those 4 months had to have raised my score to 25. I had to have been much lower. Vit D score should be closer to 50+. My goal is to get close to 80 and then go into maintenance. I used the 35 IU x body weight for the first 3 months minus what I calcuated I got in food everyday.

My Dr said to go on 2,000 IU for life but I felt that was not enough for my condition after all the reading I had done and knowing my personal history of avoiding the sun. After 3 months I did a new Vit D test and my Vit D score went up to 44. I then dropped my Vit D3 drops to 4,000 IU a day and will remain on that until I take my next test which I will be requesting in Jan/Feb 2012. If I get my score up close to 80 I will go on what my Dr advised to take which is 2,000 IU for life. I also spend 20 minutes in the sun every day and feel like I'm improving every day/week/month that passes.

I will not recommend any Vit D3 drop because I feel they are all about the same. I bought mine back in July 2011 and the small bottle lasts a real long time and it is inexpensive (especially compared to the espensive PPIs my insurance paid for!). I bought my grandchildren Vitamin D3 drops at 1,000 IU per drop and different one for my daughter/husband that are a different brand from mine. Just go on your favorite vitamin web site and order it. It will be ok.

Vitamin has done more for me than anything tried by the Drs. I'm so shocked that no Dr has ever thought about at least testing for it. Nor do they even worry about the results when the test comes out low. My Dr didn't tell me what to do about it until I emailed and asked her what do for low vitamin D scores. Incredibly disturbing. I just hope so much that more comes out on Vitamin D, as I think a significant amount of the population is suffering illnesses due to low Vit D levels. And it is so inexpensive. So much money in health premiums being paid, expensive medicines and surgery that don't work and simple Vitamin D3 drops took away the horrible searing pain of LPR.

Additionally after asking a series of questions from a impatient head GI I saw in Sept 2011, where all he kept saying to me was that I had "sensations in my stomach" for every answer he gave me, drawing on all my research, I told him "while I don't refute what your saying Dr, sensations in the stomach don't explain why I'm burning to death in my throat." I looked at him and asked, " it my vegal nerve causing this problem?" He was quite frustrated with me as he couldn't get me out of his office fast enough, he repled quite impatiently, "Of course it is!" It gave me one more piece to go research. I put into the web, "what heals nerves." It came back Omega fish oil. The articles indicate it takes awhile (maybe 2 years) but they can heal with a good diet, sun and fish oil. I researched the best one I could find. Not sure if it is but I ordered for myself Carlson Norwegion Cod Liver oil with lightly lemon and use it on my green salads and I noticed that together with the vitamin D3 drops I've been improving. I still have LPR but every week/month I get better. Its a milder form of LPR now.

Yesterday on XMAS day I only hesitated on the peppercorns in the Beef Wellington sauce, but other than that I enjoyed my meat and everything for the first time in 2 1/2 years. I had champagne...I'm so grateful. I felt good all day. Sometimes I go 5 days with no residual throat pain. I've basically become my own Dr and developed my own treatment plan for myself. I have quality of life now. Had I accepted what my Drs said I would have slowly withered away. When I sit next to my husband now I'm not in horrible pain and we are able to go out to eat and I can enjoy myself. I still stay away from tomatoes, pepper, garlic etc but my diet is not so restrictive. Lately, because my research has opened up a better understanding of what our body needs, I have added a B Complex, Ubiquinol CoQH, R-Alpha Lipoic Acid to my diet. I'm not really a vitamin person but realize that as I age I may need some supplemention of a few real good nutients that may be missing from our western diet. I research everything before I take it and my first criteria is being sure that I will benefit from it. And of course really being sure I eat well, lots of fresh greens and vegetables and lots of water. As I've improved, I've been able to add back some meat but fish remains my main "meat". Thank you for asking your questions, as I ws devasted by LPR and writing/sharing on these blogs has been theraputic. I still can't quite believe I have overcome this devasting illness just by connecting the dots and thinking logically and not accepting "that there was nothing more that could be done". My ENT, on my last visit was so surprised that my lower throat had completely healed. He wanted to know what I had been doing. He kept staring at me in dismay. He noted in my chart that I was on Vit D and fish oil when he asked me what I had been doing.

I'm keeping my fingers crossed that on my 6 month check up with ENT he will find improvement in the upper throat. My GI turned me over to ENT as she said there is nothing more she can do for me. I still worry about throat cancer but the pain level is not searing and only once and while I feel like my neck is bruised and my ears will sometimes get an ache. My throat still looks white opaque up to my molars so I try not to look at it as its upsetting. Thank you for asking as it allows me to talk about it. When I read you were losing weight and were thin I know you must be so worried. Pull out all the stops and experiment and use your common sense. Drs give us pills that sometimes help but LPR doesn't respond to medications for some reason and the medications are seriously dangerous as they deplete the senergy of nutrients in our gut. The gut is 50% of our immune system and the PPIs come close to shutting it down...logically that points to further deterioration of health in every area. I read so much on this and I was terrified of taking PPIs. I felt so sick on them. My legs where like lead weights when I took them. Probably depleted Vit B. I know sometimes PPIs are necessary but I'm terrified of them. That is probably why I chose surgery over taking PPIs, because did nothing for me except make me worse and give me pneumonia. Write me how you are doing. I'll answer. Don't give up no matter what the Drs tell you.

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