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-   -   Anyone with LPR and healing well ?? (http://www.healthboards.com/boards/acid-reflux-gerd/848848-anyone-lpr-healing-well.html)

cindyloutx 05-09-2011 04:29 PM

Anyone with LPR and healing well ??
 
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

worrywartmom39 05-09-2011 05:24 PM

Re: Anyone with LPR and healing well ??
 
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 :-)

cindyloutx 05-10-2011 06:45 AM

Re: Anyone with LPR and healing well ??
 
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.

cindyloutx 05-10-2011 09:50 AM

Re: Anyone with LPR and healing well ??
 
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.

worrywartmom39 05-10-2011 11:19 AM

Re: Anyone with LPR and healing well ??
 
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!!!

cindyloutx 05-10-2011 11:44 AM

Re: Anyone with LPR and healing well ??
 
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.

tclarklpr 05-10-2011 05:32 PM

Re: Anyone with LPR and healing well ??
 
[QUOTE=cindyloutx;4750482]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[/QUOTE]

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!

cindyloutx 05-10-2011 06:13 PM

Re: Anyone with LPR and healing well ??
 
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.

Thanks !!! Cindy

cindyloutx 05-10-2011 06:16 PM

Re: Anyone with LPR and healing well ??
 
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.

tclarklpr 05-10-2011 06:47 PM

Re: Anyone with LPR and healing well ??
 
[QUOTE=cindyloutx;4751431]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.[/QUOTE]

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...

MountainReader 05-10-2011 09:58 PM

Re: Anyone with LPR and healing well ??
 
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 [I]Solutab version[/I] 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.

cindyloutx 05-11-2011 08:02 AM

Re: Anyone with LPR and healing well ??
 
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.

Cindy

eew 09-10-2011 09:16 PM

Re: Anyone with LPR and healing well ??
 
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.

cindyloutx 09-11-2011 07:34 PM

Re: Anyone with LPR and healing well ??
 
Thanks for that posting ! At this point, I'm willing to look into any possibility.

eew 09-11-2011 07:50 PM

Re: Anyone with LPR and healing well ??
 
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.


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