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Old 02-10-2012, 12:05 PM   #1
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LPR- Nearly Cured! READ THIS

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!

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Old 02-12-2012, 06:56 PM   #2
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Re: LPR- Nearly Cured! READ THIS

Found this an amazingly interesting read thanks, I have bumps in the back of my throat have had them checked by a specialist who said they were nothing to worry about. Problem is since then I have had health anxiety pretty bad which i believe has been causing other symptoms aswell such as muscle twitches and palpitations. I have been having quite a bit of reflux in my throat for quite some time now and believe it is what has caused the bumps in my throat and constant throat clearing. The reflux being due to the health anxiety would make a lot of sense. im currently starting cbt for my health anxiety but may look into xanax aswell as quitting smoking.
Thanks Matt

 
Old 02-12-2012, 07:44 PM   #3
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Re: LPR- Nearly Cured! READ THIS

It sounds like you have what I have. I bet 75% of all the LPR symptoms on this board would get drastically better with this regimen. If there is one common symptom EVERYONE with LPR has, it is stress/anxiety.

Don't forget the carafate. Getting a doc to prescribe xanax is tough. Especially for this problem as so few doctors even know it exists. If you want to talk to a doc, I recommend looking up Stuart Shipko in Pasadena. He treated me as well as the other members I mentioned who first brought this regimen to my attention. Best of luck.

Last edited by Xhale12; 02-12-2012 at 07:45 PM.

 
Old 02-13-2012, 10:38 PM   #4
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Re: LPR- Nearly Cured! READ THIS

I won't go into the long story but I've had severe LPR. The stress myth is total bunk in my opinion. Don't walk, run to get your Vitamin D hormone level checked. If it's not at a score of 65, get it there (and keep it there by getting tested every 3 months). If its low take Vit D3 drops or softgels. Also get to try to get to sleep if at all possible between 9-10 pm. And get 10-20 minutes of sunshine each day. It will take awhile to feel better. It worked for me. And I thought my life was over I had such severe LPR (also called silent acid reflux or burning throat symdrome). I thought I would be checking out of this life as I was losing 1-2 lbs a day. All my Drs told me there was nothing more they could do for me. I decided I had to become my own Dr. Also check your B12 lab score. If its not close to 800 start taking a B Complex. I also take a fish oil free of toxins. Let us know if this helps you.

Last edited by eew; 02-13-2012 at 10:44 PM.

 
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Old 02-14-2012, 08:14 AM   #5
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Re: LPR- Nearly Cured! READ THIS

Quote:
Originally Posted by eew View Post
I won't go into the long story but I've had severe LPR. The stress myth is total bunk in my opinion. Don't walk, run to get your Vitamin D hormone level checked. If it's not at a score of 65, get it there (and keep it there by getting tested every 3 months). If its low take Vit D3 drops or softgels. Also get to try to get to sleep if at all possible between 9-10 pm. And get 10-20 minutes of sunshine each day. It will take awhile to feel better. It worked for me. And I thought my life was over I had such severe LPR (also called silent acid reflux or burning throat symdrome). I thought I would be checking out of this life as I was losing 1-2 lbs a day. All my Drs told me there was nothing more they could do for me. I decided I had to become my own Dr. Also check your B12 lab score. If its not close to 800 start taking a B Complex. I also take a fish oil free of toxins. Let us know if this helps you.
I can vouch for this.

Amazing story Xhale 12.

Carafate is a pretty basic drug.

Last edited by kevinla; 02-14-2012 at 08:15 AM.

 
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Old 02-14-2012, 09:29 AM   #6
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Re: LPR- Nearly Cured! READ THIS

Xhale, very interesting story. I agree with you that stress is HUGE in causing/excerbating reflux. It would be interesting to do a poll on this. I'm glad you got relief from the xanax, but beware of using it long-term. Doctors almost certainly know it exists. It's been around for a long, long time. But, in my experience, at least, they hesitate to prescribe it because it's addictive, or that's what they claim. (Although, come to think of it, that doesn't stop them from passing out addictive PPIs.)

Hi Eew, thanks for sharing the D3 story. There may actually be a link between D3 deficiency and anxiety. At least, that amazing Dr. Gominak believes D3 affects every cell in the body. Plus helps us sleep. So you and X-hale are both right.

GG

 
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Old 02-14-2012, 10:11 AM   #7
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Re: LPR- Nearly Cured! READ THIS

Yes, there is probably a common link. XHALE did you go in the sun when you were on vacation? Where did you vacation at? Was it at a latitude with alot of sun?

 
Old 03-07-2012, 09:15 PM   #8
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Re: LPR- Nearly Cured! READ THIS

To eew: I just posted a question on the message board about what the optimum Vit D levels are for LPR patients (oop! wish I had read your post above first!) Anyway, I was wondering how you found out about 65 being a good level to shoot for - ? (This does verify in my mind that my son's score of 32.8 is WAY too low.) Did a particular type of doctor or nutricianist make this recommendation? My son's pediatrician just shrugged off my concern and told me not to mess with Vit D suppliments in fear of my making my son's condition worse. My son's GI doc also told me that my son's levels are "fine" (although they also tell me that "LPR is not their specialty and they have no idea what is causing his cough". My son's ENT was the one who diagnosed the LPR, but he has given us absolutely no direction on how to deal with it.) As a side note, my son's Vit B level was also a bit high... 1035 (whereas the "normal" range is like 124 - 918. I am wondering if this might be causing him problems too. Anyway, any thoughts or feedback that you or others can offer would be TREMENDOUSLY appreciated!!! THANKS!!!!!!!!!

Last edited by hb-mod; 08-13-2012 at 03:16 AM.

 
Old 03-07-2012, 09:29 PM   #9
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Re: LPR- Nearly Cured! READ THIS

How old is your son?

Has your son had a PH test?

EEW has me on Vitamin D supplements. My score was 19.

My Vitamin D level was 19. I did a Google search for what the optimum level is. I believe 65 is what I found as well.
She is the Vitamin D guru. I trust anything she says as about Vitamin D.

Gaviscon Advance is a cure that works for a lot of people with LPR. I just started it.

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Old 03-07-2012, 11:19 PM   #10
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Re: LPR- Nearly Cured! READ THIS

Hello Hrvixou: happy to share what has worked for me. I had the same experience with the LPR diagnois. My LPR was extremely severe. I literally was burning to death from the vapor/gas/droplets hitting my throat and throat nerves. Back in 2009-2010 when I was trying to get it diagnoised they just put me on stronger and stronger PPIs. They did nothing for me. I developed pnuemonia that wouldn't go away and my blood pressure hit 180+. I look back, I was pretty sick but I was so lost in pain and trying so hard to understand what was wrong with me and I trusted my Drs to try to find out what was wrong with me. My GI in another region, entered the office in Feb 2010, the morning after I was diagnosed with pnuemonia and in quick succession said, "PPIs give 30% of the people who take them pnuemonia, I don't think the PPIs are working for you and we have to think about sending you to surgery but first we have to do a PH test." He never told me to stop the PPIs and he left the room. All my Drs were either cold, to busy or had no knowledge of how to deal with LPR (sometimes referred to as "silent acid reflux" or "burning throat") but at least these first set of Drs in another region put a name to what I had. I didn't not understand what I had as Drs don't talk very much and just give you pills. I took the Nexium off and on, balancing beteen the 20% relief they gave me and the knowledge that in me they gave me severe pnuemonia. It was a night mare. So I basically seared to death until I got to May 2010 and had a fundoplication surgery. I had no problem with the stomach part of surgery. I healed fine. But the LPR...I came out of the fundoplication surgery 10x worse! Due to a retirement and moving closer to grandchildren I had to start up with new Drs who knew even less then the prevous Drs. I tried reseaching and went down every road imaginable to try to understand what I had and what could possible be so wrong with me that no Dr could help me. The new Drs either yelled at me in front of my husband saying, "that's absurd! I never heard of such a thing..." mind you I was describing the best I could as a patient, what hurt, and the new GI got angry with me like I was making it up. I began to think I was losing my mind. I was referred to mental health and through all of the meetings I kept saying there is no stress in my life except I'm in excruciating pain in my neck, head, throat, ears, cheek, behind my nose. Finally I was referred to a new GI and ENT (after I demanded that I get new Drs or I would report them) and I got new Drs who at least tried to listen. Finally the new ENT confirmed my throat was so seared that he had to go in and do a biopsy. It was indescribable the pain and I was in and the terror I felt losing 1-2 lbs at day for 3 months. These new DRs told me they had never heard of LPR and doubted it existed. Even when I showed them the printed web page of the closest University teaching hospital who had a LPR website they were stunned. The new GI said she went to that University as a medical intern and had never heard of LPR. Words can not describe my terror or desperation. My Drs didn't have the faintest idea what I had nor even how to help me. And mind you it was well documented I had a fundoplication and had LPR. I guess I was beginning to cost alot of money and they didn't know what to do for me. I slowly gained some knowledge of what I had, just by reading and reading and researching. It took a long time for me, as I'm just a patient, with no medical back ground to understand what I had. Basically, what I could gather was that the LES & UES don't close off the stomach and acid vapor/gas/droplets rise and hit the throat, which can not take any vapor/gas/droplets of acid of any kind. The throat tissue is only one layer thick... and when acid vapor/gas/droplets hit it non-stop day after day, it begins to burn through the nerves in the thin layer of the throat. The lower esphogus is made to take vapor/gas but not the top thin layer of the throat. I understood by Jan 2011 the mechanics of what was wrong with me but I didn't understand why the fundoplication didn't work. The PH studies done after the fundo sugery showed that my acid score above the LES went from a score of 40 to .4, which is just about what most people have. So my new GI thought that maybe there was a second problem they couldn't identify that was wrong with me. So that became the sticking point. They didn't want to see me anymore as they couldn't do anything for me. All the Drs, the ENT, the GI, the Regional GI all told me I had to learn to live with the searing unbearable pain. And they never offered pain medications. Meanwhile I burned to death 24/7. Yes, it was a nightmare. My new GI offered Carafate but it didn't help me. I still burned to death. I slowly began to take over my treatment plan. I took bottles of Gaviscon...didn't work. And because the GI didn't know what to do she allowed me to do it to develop my own treatment plans. I experimented and asked for medical probiotics and took 900 billion a day. I got about 20% relief. But if anyone can imagine what a burn patient goes through, that is what a LPR patient goes through, only its on the inside of the throat the the agent that is burning never stops burning you to death. My biopsy was done but it was so touch and go because I also had a thyroid removal, which was a totally separtate issue. To go into surgery burning to death took immense courage. I told the surgeon I didn't think I could make it. I couldn't take pain medications as they burn the LPR patient to death. (LPR patients have to be so careful that medicines they take don't cause more acid to be made) I had to rely only on acetomitphin for pain, as it is the only thing that doesn't cause excessive acid to rise up to the throat. And I had to do that research myself. None of my Drs was aware that they couldn't just give me any type of medication. It had to be something that didn't burn me to death. And there's not much. Only acetomitphin fills that need. The vapor/gas acid is bad enough. During this time I began to really become uneasy with the knowledge of my Drs. I was beginning to view them as not really trained well in a very common problem (LPR) alot of people have all over the world. It botherd me first of all that they thought it was stress related. That is total bunk! From what I was reading and researched, I had an anotomical problem with my esophogeal spincters. They weren't working! And the more I read it wasn't just me, it was people all over the world who had LPR (or silent acid reflux or burning throat). And it was people of all ages! Babies, children, teenagers, young adults, mature people and the elderly and my new Drs kept telling me they didn't believe LPR existed and that they couldn't help me anymore and that there nothing more that could be done. I became quite upset and desperate. I was angry that I was made to feel like there was something I was doing wrong and that they would continue to collect my health care premiums but not continue to try to find help for me. I asked if I could go outside of my HMO and see a Dr in cutting edge treatments for LPR. They denied me and said I could go if I wanted to pay for it. To be burning to death and to have them tell you they don't know what you have and that they see no need to see you anymore is incredable to me. This is the state of our medical care today! They take our premiums but let you burn to death without an outside referral. I was angy and went home and knew just enough mechanically what was wrong with me and typed into the web, "what strengthens muscles" as I knew by then that the LES and UES are small spinchter muscles of the esphogus. Up popped articles on Vit D. The more I read the more I felt it was worth a try. I kept reseaching on the beset Vit D to take. It appeared to me to be Vit D3 drop or softgels. I ordered them right away. As soon as I took them within a few days the severity of the searing burning piercing pain began to slowly leave. I realized that probably every muscle in my body and other biological processes were improving. I also had severe shoulder joint/knee pain, where I couldn't raise my arms to shower, or comb my hair or get into a coat. But the throat/head/neck/cheek/ear/behind the nose pain trumped everything. I tried to live as normal a life as I could but I was beginning to think in 2011 that if I didn't wake up it would be ok. The pain was unrelenting until I started the Vit D3. I read some articles that indicate that that doing it by weight is helpful (although there is more to it than meets the eye). I read that 35 IU of Vit D3 x the body weight is about what one needs. So I guesstamated the Vit D I got in food and subtracted that off the sum of the formula 35 IU x lbs. I made my own treatment plan and took the dose I had calculated for myself. I found a blog of people trying Vit D3 and got on it. I got better and better. On that blog one of the bloggers, Brien, shared that he found a site where a Dr Gominak talked about Vit D. I went on it and it was so enlightening to understand why it was working and it hit me that I had avoided the sun for 40 years and because I went to night college to work on my undergraduate and masters, I had developed a habit of going to bed late after working all day. Dr. G also states in her site that sleep is very important. Together with Vit D3, sleep really makes our body function at its best capacity. Together with Dr. G and the Vitamin D Council out of San Luis Obispo I've come to understand how crucial Vitamin D is to all of us of every age throughout the planet. The latitude we live in, our age, our skin color, our weight, and our life style have alot to do with how much Vit D we make on our skin. The heavier you are the more you need. And if you are not in the equator band, the sun rays just don't produce enough Vit D on the skin for a healthy life. There are many variables to deciding how much you need. I just took my last Vit D test in Feb 2012 and I only went up 1 (one) point in 3 months and because we have had an unusally nice winter I have sat out in the sun faithfully almost every day of winter for 20 minutes and it just is not enough to get the Vit D score to 65 (Dr Gominack wrote me personally and said that is the ideal human score for Vit D is 65 for best health; and she added not to ever let it get below a score of 50). So I've pulled out all the stops the last 3 days and have upped my Vit D3 dose to 8,000 IU and my throat has really begun to feel so good. I'm realizing that it is not so easy to get one's Vit D score to 65. I've written the Vit D Council, and several other Vit D scientists and they seem quite interested in hearing that it helped my LPR and asked to refer my story to scientist working in the field. They had never heard that it could improve this illness and will be looking into it. I am only a lay person, and I don't even know how to really do scientific research, but from all that I have read over the last 18 months, and how I feel I think the Vit D3 has strengthed every muscle in my body,which includes my UES/LES, thereby helping close off my stomach from vapor/gas/droplets of acid. My legs are stonger, my joints don't hurt me anymore (I feel normal now) and so many other small positive changes in my body I've noticed. Even my blood pressure is down. I use to take blood pressure medicine for high blood pressure of 148/92 or so for 6 years. The other day I went and had my blood pressure done and I'm at 129/81 and I am not on blood pressure medicines anymore. I haven't had a cold all winter and everyone around me has been sick. I read somewhere that one Vit D researcher doubles his usual dose of Vit D3 for 3 days when he feels he is getting sick as it's suppose to improve immune fuction. I think that our modern lifestyles keeps us inside alot, in front of TV and computers and we don't roam the forests like our species evolved doing. Even our babies don't get out in the sun enough. I've read that babies suffer horrible with LPR but Drs don't know what to do for them. Mothers are going through so much with sick children and I suspect it goes back to not enough Vit D. I think Vit D test should be a routine test given to every patient twice a year, once in the dead of winter and once at the end of summer. And from what Dr. Gominak has learned and has been so good to share her observations, Vit D and sleep are vital for a healthy life. As for the Vit B12, I've read that one wants to get it to a score of 800 and that the levels below that are inadequate. But I don't know that much about it. I do that that getting a B12 test is important. My B12 came out 612. I'm working to get it to 800 and I know the standards right now are 200. My sister is 420. I told her to get it up to 800 quick as she can. I have also read that Calcium/magnesium at a reasonable amount is important too. I try to take calcium of at least 1,000 and magnesiu of 400 but I'm not well versed on it and would recommend talking to your Dr and reading new emerging research on it. There is alot of controversy on recommended doses and what I read is that they are way too low. They are so low that they keep people on the verge of illness or in state of perpetual illness. I have my quality of life back and I hope this will help other people suffering to find something that will give them their life back. Let me know how it goes for you and your son. Best, EEW

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Old 03-11-2012, 10:13 PM   #11
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Re: LPR- Nearly Cured! READ THIS

kevinla and eew, I was just writing a long post to say THANKS!!! for your very helpful and informative reponses when I somehow managed to delete it! (Eeeesh!) Anyway, it's late and I don't have time to re-write it all. However, I really cannot sign off without at least ensuring that I say a HUGE HUGE thank you for everything! I do have more questions for you both, and I'll try getting them on here later in the week. In the meantime, THANK YOU THANK YOU THANK YOU! This blog, with powerful responses and super helpful suggestions from people like you, is the only thing that makes me feel less isolated in this world of LPR. And, as a mom struggling to get some answers to help my child, I cannot tell you how MUCH that means to me! THANKS AGAIN! I'll be back in touch soon!

 
Old 03-13-2012, 08:00 AM   #12
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Re: LPR- Nearly Cured! READ THIS

Hi hrvioux and everyone, you are most welcome. Vit D is not a cure but it sure helps LPR alot! No worries, when you can redo your comments, it will pop up on my email. I've done that too. Lost everything I wrote. I just read an article on a Dr. Morehouse worth the read. I am only able to save it as a pdf and I'm not able to attach to this so try to look up "Morehouse physician touts benefits of ‘sunshine vitamin’ for better health". Looks like its on a Wiki article and at the bottom of the page are two articles one in 2011 and one in 2012 that are pdfs. They are worth the read. Let me know what you thoughts on it. Did I share with all of you that my normally high blood pressure went to 129/81...quite an improvement. I'm not on blood pressure medications anymore. I'm not doing bad for being 60 years old even though I'm still have LPR but a much much milder version! I'm still so stunned Drs don't use Vit D test or prescribe it for their patients. I know that I have been probably low in Vit D all my life. I've ordered B12 drops, calcium carbonate (easier on LPR patients as it doesn't cause excessive acid) and Magnesium. I'm keeping my fingers crossed it will keep me improving. I will let you know after I receive them and have been on them awhile if there is more improvement. I've upped my Vit D to 8,000 IU a day for one month then I plan to go to 6,000 IU for anothe month and then retest. If I can get myself to a Vit D score of 65 I will level off at 4,000 IU of Vit D to maintain. Take care now. eew

 
Old 03-13-2012, 08:31 AM   #13
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Re: LPR- Nearly Cured! READ THIS

Just to let you know, Xanax can actually cause gastrointestinal problems in the long run. It gave me severe-acid reflux, actually, which is the reason why I am here. When I stopped taking Xanax, the reflux stopped as well (though it took a month to heal after withdrawal). Benzo-diazepams are notorious for ruining your digestive system. It relaxes the LES more than anything else...This is a word of caution...

 
Old 03-13-2012, 02:29 PM   #14
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Re: LPR- Nearly Cured! READ THIS

Cminor, Thanks so much for the warning. My doc gave me a prescription for Ativan, and I was considering trying it to help me sleep. Don't think I will now.

G

 
Old 03-14-2012, 06:30 AM   #15
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Re: LPR- Nearly Cured! READ THIS

I was actually wondering about the xanax. I have been taking it more frequently the last couple months. Also been taking some sleeping pills, more than usual. I think I have LPR and this just developed all of a sudden the last month or so.

 
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