Hello all. I first started having symptoms on Feb.18th this year (2011). I was misdaiagnosed with pharyngitis and possible strep. I had a sore throat, major sinus drainage, and trouble swallowing solid food. Went to see an ENT the next week. He scoped me and sent me for an Upper GI Barium Swallow. After that, I was put on Dexilant 60mg in the A.M. and Zantac 150mg P.M. As of today, it's been 69 days and I can still not eat solid food. To just stay alive, I can get down Instant Breakfast drink, Cream of Wheat, Water, Mashed potatoes and gravy (instant), and yogurt. No caffeine and no alcohol.
Sometimes I will have a few pretty good days that make me think I'm starting to heal and get better. Then, I'll have a set back and the sore throat, burning stomach, globus feeling in my throat, and swollen tongue stuff start again for a few days. I live in south Texas where allergy stuff is bad for most people. I don't know if that has anything to do with it or not.
I got very depressed the first few weeks. It's as if my life has almost stopped. I don't go to functions or parties because I can't stand to watch everyone eat and drink and enjoying it all. We don't go out to dinner anymore either, all because of my condition. This stinks !! Can anyone offer me any hope here ? I'm sick and tired of being sick and tired. Help please.
I'm so sorry! (((HUGSSS))) I know how it feels to have something just happen and feel so bad all the time. It seems my symptoms just appeared one day as well. Of course I have had severe GERD for years but have always used my medications when necessary. This last few months has been very stressful for me/anxiety and such, so perhaps this is what triggers LPR. I don't know but I truly feel for you, I really do! I do want to say, I was trying an antibiotic (amoxicillin 500mg) that was left over and I feel a difference. So, I am starting to wonder if I have had a sinus infection or inner ear infection or something? Still have the mucus in the evenings though, but no where as bad. Some ear fullness some, but it isn't as bad either.
I hope you get some relief soon, my ENT appt. is next Tuesday and I am so nervous, trying not to think about it! Good luck in your treatment :-)
The following user gives a hug of support to worrywartmom39: cindyloutx (05-10-2011)
Hi worry. I hope your ENT appt goes well. I have a follow up with mine on May 31. I called and left a message for the nurse yesterday. I've read a lot of posts on here where many people say that a double dose of PPI's is what it took for them to get better. Right now, I'm just on the one PPI in the morning and the Zantac (H2 blocker) in the evening. I have no choice but to watch my diet because I can't eat much anyhow.
The feeling bad all the time is the worst, isn't it ! You just get so tired of feeling bad and wonder when will it end. Let me know how your appt goes. Hopefully, they will find the right thing for both of us.
Also, I think my PPI (Dexilant) has stopped working. Now I'm starting to feel the acid back up during the day about 2-4 hours after I take the Dexilant. I don't wake up with a sore throat like most do. Mine happens more as the day goes on.
For me, after taking the 500mg of Amoxicillin for three days now, the mucus is not as bad, I hardly have a sore throat at all, the feeling of something in my throat is not as prevalent as before either, and the clearing of the throat has gone down tremendously. Thats why I feel I have had some kind of infection along with LPR reflux and my GERD because I have been taking zantac and prevacid as well. I have finally started noticing a difference and feeling better. I'm still keeping my appt. though. I was so scared when all of this first started though. Your mind always thinks the worst ya know. :-) But I think I'll be okay, just hoping the ENT still does not want to do the nose scope thingy!!!
Last edited by worrywartmom39; 05-10-2011 at 11:21 AM.
I completely understand. I was terrified at first. I'm still worried and scared. Just because it's been so long and I've made no real progress. We will see what happens if the doc ever calls me back or at my appt on May 31.
Hello all. I first started having symptoms on Feb.18th this year (2011). I was misdaiagnosed with pharyngitis and possible strep. I had a sore throat, major sinus drainage, and trouble swallowing solid food. Went to see an ENT the next week. He scoped me and sent me for an Upper GI Barium Swallow. After that, I was put on Dexilant 60mg in the A.M. and Zantac 150mg P.M. As of today, it's been 69 days and I can still not eat solid food. To just stay alive, I can get down Instant Breakfast drink, Cream of Wheat, Water, Mashed potatoes and gravy (instant), and yogurt. No caffeine and no alcohol.
Sometimes I will have a few pretty good days that make me think I'm starting to heal and get better. Then, I'll have a set back and the sore throat, burning stomach, globus feeling in my throat, and swollen tongue stuff start again for a few days. I live in south Texas where allergy stuff is bad for most people. I don't know if that has anything to do with it or not.
I got very depressed the first few weeks. It's as if my life has almost stopped. I don't go to functions or parties because I can't stand to watch everyone eat and drink and enjoying it all. We don't go out to dinner anymore either, all because of my condition. This stinks !! Can anyone offer me any hope here ? I'm sick and tired of being sick and tired. Help please.
Cindy
I feel your pain and you are def. not alone. However, Dexilant at 1x per day for serious LPR reflux (assuming you dont have PVVN or some other issues outside of LPR) will not cut it. Every expert I have visited clearly stated this. You need to double the dose along with REAL dietary changes.... I too was Dexilant 1x per day for the past 3 or 4 months... wasted time and energy with limited relief and many ups and downs...in fact now I am worse. I recently visited a highly respected ENT in this area and was told things need to change if I want to get feeling better. I just started my new regimen, but Dexilant at 1x per day was def. not cutting it. Now doing 2x daily PPI PLUS Zantac, and Klonopin for PVVN. Hope you get better soon!
Thank you tclark ! I've seen over and over on the boards that 2x a day PPI's made a big difference for many. I too feel worse with this most recent set back. I may have to switch ENT's, because I placed a call yesterday and left a message for his nurse and no return call yet. I also called and left another message today, and still no return call. I'm getting even more frustrated now. I don't have much choice but to watch my diet, as I can hardly get anything down anyway. I can't eat any of the "bad or trigger" foods. I'm lucky I can still get down water, yogurt, Whole grain cream of wheat, mashed potatoes, and yogurt. That's pretty much what my diet consists of . Oh, and Instant breakfast for the vitamins in it. I have drank so much water today I think I'm going to float away. I also take Xanax for anxiety ( I know a lot of people frown on that). But...it is necessary, trust me on that !
I'm also wondering if my dental surgery didn't trigger this in some way. I had 3 teeth pulled and one build up done about 3 weeks prior to the onset of this nightmare. And I have a HUGE dental phobia. It was all I could do to sit through all that. My heart was pounding the entire time. Sure, I have my partials now and a nice smile, but at what cost I'm wondering.
Anyway...thank you so much for your response. I'm going to get up early tomorrow and call as soon as the doctors office opens. If I still don't get a response by noon, I'm going to start looking elsewhere. The bad thing is...we are private pay. No insurance. So I'd have to start all over with a really high initial office visit cost.
Also, which PPI do you take ? Is it a prescription or an over the counter one ? If it comes down to it, I may have to do an over the counter one, double it, and keep taking the Zantac at night on my own.
Also, which PPI do you take ? Is it a prescription or an over the counter one ? If it comes down to it, I may have to do an over the counter one, double it, and keep taking the Zantac at night on my own.
I am on Protonix, but many are on Nexium. I am not convinced that one of these things has better rep than others. Ive searched around. One person did say dont use Aciphex. If you already have Dexilant - start taking two - I am not a doc of course, but a friend of mine who is a GI told me that for short spurts to get patients on the right track he will tell them to take 2x 60mg Dexilant for like 2 weeks or so...then adjust from there, along with a VERY clean diet. Also, your diet is clean by most standards, but it may not be PH greater than 5 which I am told is necessary to aid in LPR recovery because pepsid can be active up to 5. Take out the yogurt and only use Lactaid milk. Stick with oatmeal, egg whites, turkey, chicken, fish, tofu, all vegetables, multi grain breads, chicken stock, NO canned goods or boxed goods, no condiments, fruits, seasonings, coffee, booze (this one kills me), sugar, pepper..just drink water... (all of this is advice from my doc FYI, and I just started myself - this is for two weeks and I am following it like religion)... also manuka honey in chamoille tea is good for a night cap. On the xanax front... I think as long as you are in control (no more than a pill a day) and it makes you feel better.. use it, that is what it is for, to get you through these hard times. I no longer punish myself for needing a xanax every once in the while. Hope you find a good doc in your area...
I've had LPR for almost a decade now. For many years, I was able to keep it under control with a combination of medications, diet and lifestyle changes. Periodically, I would have to switch up PPI's because one would stop being as effective.
For the LPR, twice per day PPI's was most effective. I would often do that and also supplement with OTC meds like the chewable Gaviscon that creates that foam barrier. You can also take up to 300mg of Zantac with your PPI's also. I found Prevacid 30 mg twice per day in the Solutab version was one of the best for the longest time. For me, 60 mg Dexilant did work. It has the same active ingredients as the Prevacid and it has a delayed release of the same amount of medications as what I was taking on the Prevacid twice a day. Taking Dexilant is equivalent to taking 2 of any of the other prescription PPI's. Someone recommended you take 2 per day of Dexilant. I'd be extremely surprised if insurance would cover that. I tried to get insurance approval a few months ago but they view it as taking the equivalent of 4 per day of ther prescription PPI's and use of it at that level is "off" label. I couldn't get them to even consider it even though I've already tried everything else on the market systematically per what insurance requires. I just supplement with OTC meds with the PPI's.
I do want you to know it is possible to get LPR under control and keep it that way for extended periods of time. I achieved control for many years. That said, eventually my LPR became extreme and it has remained that way for the last few years. According to multiple specialists I'm doing everything I can at this point but my control of the LPR is on a razors edge. If I have something cause a flare, I will have about 4 months of suffering before I get it back in control again. My translation of what my 4 docs are telling me "we have no idea what else to do to help you because standard protocol isn't working anymore." I've been classified with extremely severe LPR/GERD with tests showing I have acid coming up into my throat 46% of the day. It is coming up in a gaseous form which is extremely hard to deal with.
By the way, I work with a Gastroenterologist, Pulmonologist, ENT and Primary Care Physician to address my reflux issues.
Thanks for your input Mountain. I finally got a call back from my ENT. They want me to use Asmanex (sp?) inhaler to try and get some of the upper swelling under control. I go in for a follow up appt on May 31. So, I guess we will discuss changing the Dexilant at that point, if things aren't better then. This whole thing just leaves you frustrated and depressed sometimes. I want to eat a normal meal again. I'll keep you posted on how the inhaler works or doesn't work.
I had the same thing too. I had severe LPR and severe pain for two years. My Drs have told me for over a year now I have to learn to live with it. They took a biopsy of my throat in Feb 2011 as it is burnt to a crisp. On a hunch I had my Vit D checked July 2011. It came back low. My Dr. said to take 2,000 IU of Vit D for life. I did my own research and I found a formula that I am using for myself: 35 IU Vit D x your body weight. I take 6,000 IU based on my weight, my age and that I have avoided the sun for 40 years. From the sum I calculate with the formula I deduct 1,000 IU because I figure I get some Vit D from the food I eat and little bit of sun. I have improved so much the last four weeks. I'm holding my breath that having no pain continues. Only time will tell. I feel so lucky. I don't know why this is working. I sure would like to know why it works. I mentioned it to my GI Dr yesterday and she said she didn't know why it was working. Mystery for sure.
Cindlutx, let me know how it works for you. I've only been on Vit D on for 4 weeks and my pain has reduced to faint touch of reflux. My throat is looking better. I will have to see in 3 months how my throat looks. Also, another thing I did that had a good improvement was cut out all meat, chicken, pork, lunch meat, nitrates, citrates, coffee, chocolate, alcohol onions (the usual stuff). I have all the different seafoods for my "meat" portion. Even though I'm so much better with the Vit D I'm afraid to go back to meat. Would you share with my what your Vit D level was before you start the Vit D? I'm taking liquid Vit D3 drops as they assimilate better than the pills. My Dr is going to check me in Oct '11 to see my Vit D levels. She put me on 2,000 IU but I've put myself on 6,000 IU from the research I've done. I may reduce it in the future if my lab work indicates it. But I don't think I'll drop myself down any further than 4,000 IU. I think from all the research that I read that recommended Vit D levels are probably too low generally speaking. I will be so interested in what your levels are before you start and how you feel if you decide to take Vit D. Get well soon.
I started feeling bad a few weeks ago with terrible acid reflux and bad allergy symptoms. Went to the doctor and was prescribed nexium and an inhaler and was told to take allegra. Nexium wasn't helping with the acid reflux. Did some reading on this board and decided to start the day with a Zantac and Allegra and sprayed with saline solution every hour or so and I feel much better. Try cleansing your nostrils and see if it helps. In your case it sounds as though you have been suffering for a while so it might take some time. Also, be conscious of being around dust, mold for extended periods.
Hi guys, Just wanted to put in a quick post because I am making some progress with my 6 year old son's LPR and acid reflux. Months ago, I was at a complete loss for what to do. He had been on Omeprazole (Prilosec generic) and Zantac for over a year... maxed out levels of these, and they were doing nothing. He had a chronic cough (every 20 seconds sometimes for hours on end) and did chronic throat clearing. He had a thick layer of white mucus on the back of his throat that no specialist could account for or do anything about. He had chronic sinus infections and ear infections (resulting in 2 sets of ear tubes). We had gone through all the testing (endoscopies/biopsies, ph metry testing, immunity testing, asthsma testing, a gastric emptying test, CT scans, etc., etc.). Thus, after basically giving up on finding a cure via our conventional doctors, I joined message boards like these to see what others had to say.
First, via this group, I learned about the importance of Vitamin D3. My son's level was very low, 32, but most of our conventional docs said that as he fell within the "normal range", not to start giving him suppliments. However, after our allergist that agreed with me that my son's level was too low, we started D3 for him, and he started to improve... it was only a tiny bit, but it was worth it! Then, we started him on a probiotic tablet in the morning... again, a tiny improvement. Then, a new GI doc suggested that the Zantac may be causing the cough, so we reduced his Zantac by 1/2 (slowly) and made more progress (his cough went way down!). We also got my son an immunity booster shot as his immunity levels were SO low. Finally, as so many people suggested to do on these boards, we started looking into local naturopathic and holistic doctors.
The first naturopathic doc that we went to said that my son had an intolerance to cow's milk, baking yeast and sugar. So, I switched him to goats milk and cut out pretty much all of his cheese and breads (including pizza dough... hard to do, but we use something called Lavish now. It's like a pita bread, and it's an okay substitute... better than nothing). And, in 3 days of doing this, his throat clearing went away... completely! Our allergist was blown away... the mucus in this throat was finally gone. The naturopathic said that the mucus was the body's reaction to the food intolerances. She also put my son on a digestive enzyme. He takes it 3 times a day with each meal. And, as for food, we continue to follow a strict diet... none of the foods mentioned above, plus none of the standard reflux causing foods: no tomatoes, no spicy food, no chocolate (such a hard thing for a kid to give up, but I've been substituting in as many non-chocolate yummy sugar-free alternates as possible). We also try to eat Gluten free whenever possible. My son does not have celiacs disease, but as gluten-free foods are easier to digest, why not?!
Another naturopathic doc put my son on a few more suppliments, and he continues to improve. We are still doing a dose of Prilosec in the morning and a dose of Zantac before bed, but we hope to eliminate the Zantac by mid summer. And, we hope to get off the Prilosec asap after that.
Anyway, I guess the main thing I want to do was to inspire people to not give up on their situation. If you can find a good naturopathic doc nearby, they might be worth a visit. We have also had great success in following a strict reflux-friendly diet and trying out all those enzymes and suppliments that I was initially so afraid of (just because they were foreign to me). I wish everyone the best! LPR is a terrible condition to have to endure! I know our journey to completely heal my son is long from over, but he is SOOOOOOOOOOO much better off than he was a few months back. I finally have hope again, and I want the same for you! (Again, I know that everyone's situation is different, but maybe some of these same suggestions will work for someone else out there... if so, it's worth the post!) Good luck!
Hi everyone: my heart really goes out to all that are suffering so much with LPR. I too had it extremely severe LPR for two years. None of the PPIs helped me. A fundoplication surgery left me 10x worse. I was devasted. Words are not adequate enough to describe this devasting anatomical problem of the UES/LES.
I can't quite believe I have pulled myself out of the severest LPR. I was slowly dying and all my Drs were/are at a loss as to how to help me. They permitted me after awhile to experiment. I started off with heavy duty medical doses of probiotics. Over 4-5 months I got a 30% improvement. But a burn is a burn and its was still horrible. Like all of you I kept a very alkaline diet. I burned on everything even water. It was a night mare and the throat/head/nerve pain was excruciating. My Drs cut me lose last Aug 2011. Said there was nothing more they could do for me. They told me they did not know what I had. They refused to send me to out for an outside opinion. I couldn't imagine living a life with my family in this horrible condition.
I went on the web and asked what strengthens muscles and up popped Vitamin D. The more I researched the more I thought it could help. And it has. I have been working on getting my Vit D score to 65 and then maintain it. I also go out in the sun at least 20 minutes a day. I've improved so much over the last 10 months. I see my ENT to have my throat scoped every 6 months. On each visit so far he continues to say my throat is less red and continues to improve. I have my life back and I still can't quite believe I got control of it with Vit D3 drops. Its not a pefect cure but pretty close. Please get your Vit D test done every 3 months, read as much as you can on Vit D, and at least experiment and get your score to a 65 and get 20 minutes of sun each day on as much exposed skin as possible. I would be interested if anyone else experiences improvement like I have.
Anyone with LPR and healing well ?? 
I also take Xanax for anxiety ( I know a lot of people frown on that). But...it is necessary, trust me on that ! 
I'll keep you posted on how the inhaler works or doesn't work. 
