I'm going to make an appointment very soon with the doctor in NYC. I;ve had symptoms for 10 yrs now. Mostly chronic cough, and bad taste 24/7. Had esophageal spasms for 4 yrs which thankfully stopped. Every once in a while, I wake up with a burning stomach ache, and sometimes vomit. I'm very thin, and extremely anxious, and suffer from terrible insomnia. So I do take Xanax, but these problems started before I started the Xanax. I've had 2 upper endoscopies, which really never showed much, and a laryngoscope which showed swollen vocal chords, probably from constant coughing. I cough all day long, esp after I try to eat or drink, but smells can trigger it also. Been on all sorts of allergy and stomach meds. Nothing works. I really gave up for a while, and just suffered and figured that is the way it's going to be forever. But now that I know it's LPR, I'm going to go to a doctor who knows what it is, and hopefully get some help.
My cough and gagging fits have not been going on for years but they started May 1, 2012. I went through a lot of different tests with no conclusive findings. Finally the gastroenterologist prescribed Gabapentin, a drug used to control seizures and seizure like convulsions. I take it 3 times a day and my cough and gagging fits have stopped. If I miss a dose my symptoms all return. I am hoping that my body will self correct while on the medication because it makes me very sleepy and cloudy. It is working for me. Maybe it could help you.
I know many of you have suffered for years. I'm happy to say, after being on Vit D3 drops for 1 year I am so much better. It is not a perfect cure but close to it. I originally had planned to get to a score of 65 but I am now going to push my Vit D level to high normal of 80 as I feel like I have not plateaued. One of the things about Vit D and its positive effect on improving LPR/silent acid reflux/burning throat severity is that you feel better very slowly and it takes about a year or more to feel real good. Hope this helps. Be sure and get a base line of what your Vit D score is before you start to take Vit D3. Also I noticed that there is something about the sun that can not be duplicated in D3 drops. The sunshine has properties that D3 drops do not duplicate so I try to get 10-20 minutes of sunshine every day. I have read that high noon is the best time to get those important sun rays.
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Hi Nordic1: I'm doing so much better. Not a perfect cure on the D but so much better. I use to burn just drinking water. It was pure hell. I still have some tiny whisps of LPR when I have coffee, chocolate, wine or eat garlic or raw onions by mistake.
Also since I last wrote I read that magnesium relaxes muscles. I no longer take it.
When I do have coffee, chocolate, wine I usually take a Tums or chew some baking soda gum. But I think the baking soda gum has neutralized my stomach acid and dropped my B12 count. It was 608 in July 2011 and 530 in June 2012 and Oct 2012 it dropped down to 375. I'm not happy about this. So I realize I have to stop taking the baking soda gum. Which means I can not have that cup of coffee, or chocolate or wine. I need to get my B12 up as close to 800 as possible. I'm not sure if the Tums effects the B12 so I have to check into it. Something is making my B12 drop. And B12 is a very important thing to watch when one has LPR/GERD. Because we are all more inclined to take things that shut down the proton pumps in our stomach or neutralize it. And the acid of our stomach creates B12 and is also half of our immune system, because it kills off the viruses and bacteria that fall down from our ears, throat, and nose.
LPR/GERD patients are at risk of having our B12 drop to seriously dangerous levels. I would recommned reading up on B12 and its importance. LPR patients don't need extra health issues going on and we walk a fine line of keeping our spinchters working, eating more alkaline and trying not to take PPIs. At least it feels that way for me. I don't want to take PPIs.
I just got back my Oct 2012 D score. It was 58. It has been difficult to get my D score up there and I have spent every day in the summer for 20 minutes in the sun between 11:00 am - 1:00 p.m. I had leveled off to 4,000 IU of D last few months, when my D score hit 60 in June 2012. But now that the sun rays (I'm in the 38th latitude) don't make D on the skin, in my region, from Sept 21, 2012 till mid-March 2013 I have to be sure and supplement enough D3 drops.
My goal is to get to the high end of normal D which is 80. I feel that the higher my D score goes the better the whisps of LPR feel. And as you can see my D score is dropping not going up. So because of my weight and autumn sun that does not produce D on my skin till next March 2013, I am upping my D to 6,000 IU a day and will test in 3 months. I want to raise the D score slowly and steadily.
Currently I am better and noticed that my LPR really improved when I hit about 55 on the D score. But like I said, I'm experimenting and want to get it to a score of 80 to see how I feel. I would love to be able to get rid of the tiny wisps of LPR. But I'm so grateful to be out of horrific pain and I owe it all to Vit D. Hope everyone on the message board is improving and finding things that will help them. All of you on these boards have been so supportive when I thought I was slowly declining and only had months to live as I couldn't even drink water. So I have made great improvement. Thank you all for everything.
Last edited by eew; 10-08-2012 at 09:29 PM.
The Following 2 Users Say Thank You to eew For This Useful Post: LadySue62 (10-10-2012), nordic1 (10-10-2012)
Thanks for your reply. I guess I need to be finding out what my vitamin D and B12 levels are. I haves suffered with LPR for 6 years now. I live in western Colo. and many of the physicians are not familiar with it. I so well for awhile and then I have a flare up. In Jan. I has a egd and was found to have a Schlotski ring(sp). They dilated my esophagus and I felt better for about 4 months. I have had so many tests in the past. I had a bravo 6 years ago and passed that. Though I see that does not mean I do not have LPR. I know certain foods bother me coffee, chocolate etc. but sometimes everything bothers me. I will check out this vit d and b12 thing. I have wondered if a Nissen or Tiff procedures helps LPR? Do you know?
Hi eew. I'm new here and also live in Nor Cal. I just lost my post that I was writing for the last 1/2 hr. Oh, well. I read on a message board somewhere that having inadequate levels of HCL in the stomach can result in the LES malfunctioning. I've also read that HCL levels decline as we age. I just hit the big 5-0 a few months ago. Do you have any experience taking HCL for this condition? Based on your results, I'm going to increase my D3 intake, even though my reading was 58. I have nothing to lose and everything to gain. Thank you for telling your story and staying with this board so you may help others get well.
Hi Nordic1 and Lady Sue62: Received both of your messages. So sorry that you both are suffering. It's hard having such a difficult problem to fix. Hang in there. Experimentation with different things will help you both find what works best for you.
Nordic1, I use to think that the nissen fundo surgery made me horribly worse. But with time, I've been able to unravel what happened to me. I think the funo did help. And I think I have multiple problems that came together in a constellation. I avoided the sun for 40 years! I believe that was part of what happened to me. And I loved chocolate, wine and sweets. I say this in hindsight after alot of research and connecting the dots. Considering how serious my LPR condition was, I consider myself incredible lucky to have come out of it with some quality of life.
At the center of that is my instinct to keep researching and not believing everything my Drs told me. They basically told me after 2 1/2 years of searing to death that I had to learn to live with the horrible pain of LPR. There was nothing more they could do for me. And they refused to give me a referral to a UC system.
Thank goodness that we have the web now. I pieced together that Vitamin D, a pre-hormone, strengthens muscles. I thought that it might help me. I researched the best Vit D to take (D3 drops or liquid soft gel; absorbs better). And before I took D I requested a D lab test from my primary Dr. And I test, even after 1 year, every 3 months. At first I was going to get my D to 65 but now I'm going to experiment and get it to 80, which is the high end of normal. So a few days ago I started taking 6,000 IU again. And I'm considering pushing it to 8,000 IU for a week and then dropping it down to 6,000 IU after a week. I'm starting to realize it is not that easy to get D scores up where they belong. It takes a long time to "fill the Vit D tank".
And because I avoided the sun for 40 years I may have caused permanent damage.
As a side note, I started two types of blood pressure medicines in 2005 through 2010. One of those blood pressure medicines could have contributed to atrophy of the spinchters. It relaxed the muscle of the heart to lower my blood pressure. Over time, with other contributing factors, it may have been one of the things that contributed to my spinchters going limp.
On another note, I have read that populations that live at the equator have D scores of 80-120. And so do life guards. So it is level that we can at least gauge where we can get close to. Because I want to get rid of the whisps of vapors I have once and while, I want to experiment and push my D level to high normal of 80. Its worth a try in my opinion. Better than popping PPIs which I'm terrified of. If you have to take them than you have to. But for me I just couldn't take them knowing what they do to the acid pumps of the stomach. And it causes the gastrin hormone to go sky high, because the body senses there is not enough acid when you eat to digest the food, and it automatically pushes more gastrin hormone. Terrifying to say the least.
The acid of the stomach is extremely important for good health. LPR patients generally suffer from atrophy or "limp" esophogeal muscles. In particular our UES (Upper Esophogeal spinchter) is not stopping the small vapors in their tracks before they hit our tender single layer throat tissues. Under that single layer of throat tissue are the nerves that run up into your head and yes, down into your arms and legs. When LPR is severe one experiences severe pain from the burning throat up through the whole head and down through the extremities. And it is a living nightmare.
What makes it difficult is that many Drs have never seen it, nor recognize it, or its misdiagnosed for decades on a patient. Sometimes patients get the acid vapors into their lungs and they are diagnoised with asthma for years and they are put on asthma medicine and basically misdiagnosed. One has to see an ENT to get a clinical visual and scope down through the nose and vocal chords.
Sometimes the acid vapor hits up behind the nose or gets into the nasal cavities and one can be diagnosed as having allergies for years when in fact, valuable time is being wasted on nasal sterioids, that do nothing for the "allergy". This is what happened to me.
I went back and looked at my record and never had allergies till 2007. I went in and the primary Dr said I had allergies and gave me Flonase. I returned in July 2009 in horrific head/cheek/nose, ear/neck pain and I lost my voice. Again the Dr gave me Flonase. I dropped her and the next Dr gave me Flonase again! I begged her and pleaded with her that the Flonase wasn't working. I told her I was in horrible pain and she coldly said, "...like I said, keep taking the Flonase and if its not gone in two months than frankly there is nothing more we can do for you." Devasting. She walked out of the room. I was left with no where to turn. I told my sister and she said to get on the email and tell the Dr that since I have an allergy, then I want an allergy specialist. The allergy specialist diagnoised me with LPR within 3 minutes.
Sever LPR pain is exactly like a burn patient only the burn agent is always present and you are never offered pain pills because no one thinks of you as a burn patient. I really don't know how I survivied the 2 1/2 year ordeal. And I'm not out of the woods. I know I still have vapors up the throat. I can't help privately wondering how long a throat can take constant small vapors before the cells change.
To this day my newer set of Drs deny the first set of regional Dr's diagnoises of LPR. LPR diagnois just means that acid vapor is hitting the throat. It doesn't necessarily tell the patient why it is happening. Drs treat it by giving proton pump inhibitors, to shut down the acid pumps of the stomach. But the problem is sphincters that have lost their ability to close off the stomach.
The stomach acid is essential to good health. The acid of the stomach is 50% of our immune system as it kills off all the bacteria and viruses that enter and drop from our mouths, ears and nose. I was one of those 30% of patients on PPIs that got a severe case of pnuemonia from high doses of PPIs the first set of Drs put me on. And was put on high doses of antibiotics and kept on high doses of PPIs all at the same time. You guessed it, the pnuemonia didn't go away. And neither my GI or primary told me to stop the PPIs. They just stared at me and said, "your very very ill...you have to take good care of yourself..." but neither of them ever thought it was the PPIs causing the pneumonia. Lucky I read and researched. When I found out it was the PPIS causing it I was put in horrible position. The PPIs gave me a 10% improvement, which was not much, and I made a gut wrentching decision to take myself off PPIs. I immediately got better from the pnumonia. But because I had been on PPIs and the gastrin hormone was pumping out more and more acid to digest food, the burning was off the charts.
I can remember also when I told the first GI that my legs felt like lead weights about he got angry and asked me why I was telling him about it. He told me to go tell the primary about it. Later, he said under his breath that he realizes now that the "lead weight" feeling I had was from the PPIs.
Frankly the way I was treated by all the Drs was a eye opening experience. I felt the whole time that I was dealing with incompetence of the highest order. And the more I researched I realized that my gut feeling was right.
I hope someday, the efforts that are put into the heart muscle repair, can be focused on the esophogeal muscles. I hope Drs/researchers/scientists are studying how to help patients escape from the horrible suffering of acid going up their esophogus. What is so sad about LPR suffering is that you are labeled as having a mental condition or that you have stress you can't get a hold of. That is totally totally incorrect. If you have anxiety while experiencing LPR its most probably because acid hitting the throat sets up and automatic response in the throat that mimicks anxiety and radiates through the whole body and your thoughts, because acid is burning through the tissue and then on to the nerves of the throat.
Like I said you are basically a burn patient on the inside and the agent never stops burning you. And you are treated like you have a mental condition. I've read of alot of people that their families get angry with them. And I think its because Drs don't educate nor view LPR as a very serious condition that causes a very uncomfortable state of being for mild LPR and unbearable excruciating pain for severe cases.
LadySue62, I live in Northern CA as well. Your D level sounds very decent level. I have never tried HCL. Maybe someone on theis message board could speak to that.
It is very interesting that you have LPR with a very decent level of D. May I ask, what is your diet like previous to getting LPR.? Do you eat alot of tomatoe/sauces, coffee, sweets, alcohol, garlic? Foods that relax the spinchters contribute to the constellation of things that cause LPR. What time do you generally go to bed at night. Are you a night owl? Are you overweight like me?! (I have to lose weight to address the intra-adominal pressure issue. I want to see if it will also help my whisps of vapors by reducing the pressure inside the adminal cavity). Although I know babies, and thin people have LPR. I'm always looking for the common denominator. What causes it? Is it something we haven't thought about?
LadySue62, when you do get your B12 score would you share it? And Nordic1 when you do your D and B12 lab work would you share your scores. I'm always trying to connect the dots and figure out what are the things that are common to all of us that suffer with LPR and the different things that work for each of us. Keep writing and experimenting! Take care.
When my LPR symptoms first appeared in May, I was consuming large amounts of coffee, alcohol, chocolate, and spicy foods. I'd think nothing of going home after work and having a glass of red wine with a chocolate cookie. I think my LPR was the result of my diet. Otherwise, I eat mostly organic foods and very little wheat and dairy. I am slim and have been all my life. I have not been officially diagnosed with LPR, but I'm fairly certain that's what I have.
As time went on, my condition worsened and my sinuses were affected. I began to have post nasal drip and sleep apnea. My tongue was coated, swollen and burned at times. My throat was constantly red and inflamed but thankfully the burn was not severe. I had a persistent feeling of a lump in my throat. Eating and chewing gum actually made it feel better. The stress and anxiety of not knowing what was wrong with me certainly exacerbated the condition.
I went to an allergist even though I've never had allergies. I tested negative for asthma and was put on amoxicillin and a nasal steroid spray. After 3 weeks with no relief, I went back to my primary care physician and she put me on PPIs and a 5 day course of a different antibiotic, zithromax. My condition improved by 50% in just a couple of days. Maybe I had a subclinical infection. I don't know. At the time, I thought all I needed was another round of antibiotics and I'd be cured. Unfortunately, that didn't happen. I went to an ENT who confirmed the throat and vocal cord inflammation. He wanted me to double my dose of PPIs, but I intuitively felt that was not the right thing to do. I have not had an endoscopy or barium swallow test. I don't like the thought of either.
I have been caffeine and alcohol-free for 2 months and I've had only negligible amounts of tomatoes, chocolate or anything spicy. I go to bed around 10pm and (try to) sleep on a wedge pillow. And just to be certain it's not allergies, I bought a $300 air purifier for the bedroom. I dropped the PPI dose from 40 mg/day to 20 mg/day and haven't noticed a change. I'd like to think my LPR symptoms are lessening but occasionally I have a bad day. The sore, tight throat is always there. I cough up mucous from around the top of my windpipe. It's not a tickle cough but one that I consciously initiate.
I'm also seeing an acupuncturist who gave me Chinese herbs for my stomach which contain DGL, as well as digestive enzymes. I'm also taking a 30B probiotic 2x/day. I would rate my recovery at about 80-85%. I am of the belief that the body can heal itself when given proper nutrition and supplementation. The sooner I get off the PPIs, the better, but I'm afraid of my throat getting bad again, so I'm slowly weaning off them.
Eew, are you aware of the "whips of vapors" that you speak of? Personally, I don't notice anything but the sore throat/tongue and PND. If I knew vapors were present, I'd pop a Tums or something. I will ask my PCP for a D3 and B12 tests to see where I stand with those. There is info on the internet about LPR/GERD and HCL supplementation that I'm going to research further. I KNOW I can get well without medication and I'm going to find a solution! Take care of yourselves.
LadySue, I read your post just now and I think you are doing a great job. Yes, from what you have described you symptoms sound just like LPR. When my LPR was severe the acid vapor reached just below my back molars. So the ENT when he checks me is always checking the inside of my mouth to see how far the acid vapor is hitting.
What caught my attention is the you have sleep apnea. So do I. I was diagnosed after years of having it because I was falling asleep at a drop of the hat. I think that was in 2008 when I was diagnosed. I have a suspect that there may be a link with sleep apnea and the pressure that builds up in the breathing process to get air when the tongue falls in the back of the mouth. The suction is very great to get air and that may have something to do with the spinchters losing their ability. But because I got so much better with Vit D, I continue to feel that it is a constellation of things that come together. Perhaps weight, sleep apnea (thin people often also have sleep apnea) and foods that relax our spinchters and eating just before lying down.
But you are doing a real good job of managing your LPR. I would say have those scopes and exams. The only one that I had real serious reservations about was when they made me drink thick yukky stuff (that part doesn't trouble me) but the x-ray of the internal organs disturbed me deeply. They take xrays over and over as they watch in go down the esphogus. I know it was necessary but dispise taking x-rays. And there was no way to get around it. And then after the fudo surgery they insisted on doing another whole testing and I was so despondent and didn't want to do it. I'm totally scared of x-rays and what they do to our cells. But there was nothing I could do as they had to see if my fundo surgery was in place and had not come apart.
So anyway, your doing great with your progress. Its alot of hard work I know but at least we are salvaging quality of life for ourselves instead of popping PPIs. Best to you and everyone.
I read on a message board somewhere that having inadequate levels of HCL in the stomach can result in the LES malfunctioning. I've also read that HCL levels decline as we age. I just hit the big 5-0 a few months ago. Do you have any experience taking HCL for this condition?
HI Lady Sue,
After dithering for a few years, I decided to try the HCL/Betaine regime recommended by many naturopath doctors and nutritionists. (Interesting that it's almost always mainstream doctors who insist on diagnosing high acid and prescribing acid-blockers, while those opposed to prescription drugs suggest the possibility of low acid. Wonder why.)
I started small, following the suggested protocol: one tablet with a meal for a day or two, then two, then three, etc. If at any time you experience warmth or burning in the stomach area, you're advised to back off -- reduce the dose. I'm now on Day 6, and up to three capsules.
Results so far: less burping, abdominal bloating MUCH reduced, no nausea, sinuses much improved. This has happened while I was doing outside work that required continual bending over, day after day. Also, I have been very careless about my diet, eating too much sugar and the occasional chocolate bar and drinking a glass of wine most days. And coffee every day. When I start behaving myself, the HCL will get a fairer trial.
You probably can find web sites that list symptoms that may or may not be caused by low acid. On a couple, I had 12 of the 13 symptoms, right down to the peeling fingernails. Then again, 50 is still pretty young, and you may not have low acid at all.
Hi GG, Thanks for the info. It's amazing how well you're doing on the HCL/Betaine supplements. And you're eating all the things I've sworn off for the time being! Well, I do have an occasional scoop of raspberry sorbet. ;-) I'd greatly appreciate it if you'd keep us posted on your progress. I had a great weekend working out in the yard and I felt better being in the sunshine making natural D3. It sounds like you've had LPR for a few years (or more)? Do you have any symptoms still? Do you just avoid the standard triggers? I'm hoping that once my throat heals completely I can drink coffee and alcohol again -only this time in moderation. ~LS
Yikes, I wouldn't want to encourage anyone to start misbehaving as I have been! Normally I try to avoid sugary stuff and wheat -- especially wheat. I also take probiotics every day, plus krill oil and large doses of Vitamin D3 and B12. I rarely drink more than a glass of wine a day and certainly don't indulge every day.
I TRY to drink lots and lots of water every day. Perhaps the most helpful supplement for me, during a period when I was nauseous and tired every day, was mastic gum.
Yes, I've had GERD/LPR on and off for about 10 years. But I've also had sinus problems since childhood, and it's hard for me to tell which symptoms originate from the sinuses and which from the digestive system. Today I'm a bit hoarse, but is it from singing too much last night and enduring weeks of rainy, cold weather?
Some people believe that all of these respiratory ailments can be traced to GERD/LPR. I do not.
I'm hoping to increase the HCL/Betaine dose today. I'll keep you posted.
I hope you improve enough to enjoy some of the food and drink you love. Deprivation is fine for a while, but gets old, doesn't it?
Hi eww. I rcv'd my lab results. The B12 was > 1000 and the D3 dropped from 58 to 45 even though I've been taking 5,000 IU daily. It's in pill form, not even a softgel, so I guess it's not being assimilated very well. I'm thinking about switching to a liquid. On a lighter note, I celebrated a friend's birthday yesterday and had 2 glasses of wine with no ill effects. Again, this is a chronic condition that probably took years to develop so falling off the wagon once or twice on special occasions isn't going to make a difference in my opinion. Do you know when your symptoms first started and possibly a reason why? Enjoy your day! -LS
Hello! I have been dealing with LPR for the past few years. I had a really good run for an entire year where I was finally symptoms free. I had some sort of relapses. I am on Prilosec twice daily and it doesn't do much. My major issue is the swallowing difficulty.
I was wondering if you could let me know the name of the doc in NYC and how you know you had bile reflux.
Originally Posted by Xhale12
Hey guys. I have had LPR for almost two years now. In that time it has made my life a living hell. I thought I would share my story of how I am now nearly cured, and soon to be TOTALLY cured.
First off.... I started my first LPR treatment 2 years ago with PPI's. I took Prilosec twice a day. It did nothing for me. A few months down the road, I felt it was a bit more effective, but I was still miserable. As a side note, I am only 20 years old.
I then went to a very famous LPR doc in NYC (most of you should know who Im talking about). She told me I have nerve damage AND reflux. I was prescribed a hefty dose of Gabapentin and Elavil. This did help for a bit, but it never relieved my symptoms to the point where I felt "good". I quit both meds when my dosage was finally up so high, I felt like a walking zombie.
I have also been on 10 or so different diets in the last year. To no avail. I was never overweight, and am in very good shape, so losing weight was not an option for me. The diets I followed were more to limit acidic food intake.
It was not until a few months ago that I realized one of the main causes of my symptoms. Anxiety/stress. My LPR was ALWAYS worst during times when I was anxious and or stressed out. I noticed this when I went on a week vacation, and barely had any symptoms. As soon as I came back home, my symptoms came back. I am sure many of you on here have noticed this as well. Instead of trying to treat the LPR, I decided they should try treating the anxiety....
I have been taking .5mg's of Xanax every night as well as carafate tablets throughout the day. 2 weeks later, I am nearly symptom FREE. I can't believe it. What I have is bile reflux. It is different than typical acid reflux. I am certain many of you have this form of reflux as well. Xanax and carafate help get it under control, and do it VERY quickly. The xanax also makes me sleep like a baby. I am not the only one who has found success with the regimen. After alot of conversations with my awesome doc, it appears MANY have been cured of LPR by doing this.You CAN be free of this disease! Had you told me my symptoms would be 90% better a month ago, I would have called you crazy. Feel free to ask me any questions!