Warning, long post! - LPR/Silent Reflux - A troublesome, chronic puzzle

[Orange Lightning]

First of all I'd like to say that I have read the replies to my previous posts, and taken them to heart. I'd like to personally thank everyone who has offered their support so far. However I cannot take these replies to my head, as right now it is illogical to say that I have anything other than LPR, also known as Laryngopharyngeal Reflux Disease or Silent Reflux. For anyone worried about this sort of disease, I truly apologise and advise you not to read on as what I have typed may be disturbing or cause you anxiety.

Looking at the professional websites for diseases such as NHS, WebMd and Cleveland Clinic, I match every symptom to do with the disease. These include:

- A constant stream of mucus/post nasal drip in my throat, but not in my nose. Usually worse when I wake up or immediatly after eating. Hot water, cough medicine etc do nothing to it and I think it causes a sore throat first thing in the morning
- Mucus stuck in my throat. Same problems as above. Very annoying..!
- Constant cough. It isn't forced but it needs to happen due to the stuck mucus.
- Burping, even after drinking water. It usually causes more mucus to be produced, so surely I'm bringing up pepsin?
- Bloated feeling after meals larger than, say a bowl of breakfast cereal. This is highly annoying as I used to be able to eat a lot..! It sometimes causes palpitations.
- Feeling of gas moving/gurgling up throat whenever I cough, breath in or bend over. Not quite the same as burping this.
- Shortness of breath, this only goes away if I become bloated.
- Burning sensation at bottom of throat, usually kicks in when most gassy and goes away while eating. This is probably the most worrying symptom., as it can even happen if I don't eat anything at all, sometimes first thing in the morning.
- Anxiety/Racing thoughts only kick in when the above symptoms do.

Now recently I had an endoscopy and a barium swallow. Both of these are clear, however 85% of people with LPR have clear tests like these, so they prove nothing. I admit I have tried 'Googling' again, but can find nothing that suggests I have anything else other than LPR. Even this very forum is fond of saying I am likely to have LPR, although some people get it mixed up with GERD. To try and relieve my anxiety I have assumed the worst; I make myself believe I have LPR and have therefore tried adhering to the treatments for it. That means PPIs, H2 Blockers, Traditional Remedies, Diet Changes and Lifestyle changes. However these aren't working at all. Here's everything I've tried for the last 7 months and counting:

- Diet restricted to ludicrous levels such as bran flakes, salmon, potatoes, chicken salad, garlic, nuts and seeds and other bland foods. No citrics, caffeine, chocolate, mints, alcohol or tomatoes and very little sugar or dairy. No effect, even on days with NO sugar or dairy.
- Lifestyle changes include raising the head of the bed, exercising more, eating less more often, getting more sleep and stress relieving techniques such as antidepressants, hypnotherapy and CB. No effect, except for 10 minutes after hypnotherapy maximum.
- Traditional remedies such as apple cider vinegar, baking soda/sodium bicarbonate, increased water intake, throat lozenges, ginger, manuka honey and natural liquor ice. No effect. The well known "baking soda test" suggests I don't have acid reflux, and yet the problems continue.
- Medications such as Setraline, Diazapen, Lansorprazole, Omeprazole (both PPIs at double dose), Ranitidine, Gaviscon Advance, normal Gaviscon, Tums and others I can't remember. Only Gaviscon Advance has any effect, and it's very little but it also makes me more bloated. Otherwise, no effect.

LPR is caused by the stomach enzyme Pepsin. And Pepsin is well known for causing esophageal/larynx/lung cancer. In fact more people with LPR are likely to get cancer than those with GERD. Just ask Dr. Jamie Koufman, a resident expert in the field. Yet even she can't begin to figure out how to cure this disease, beyond ideas such as alkaline water and diets that resemble that of a locust. Worse still these "cures" don't work for everyone, and it is notoriously difficult to diagnose LPR. ENTs can check your throat and voicebox for damage, but other diseases besides LPR can do the same kinds of damage. Furthermore 24 hour PH tests - the usual gold standard for diagnosing LPR - need to be specialised (double-probed) and don't always pick up LPR either. Even the latest medical advancement - a rapid spit test by a team called "Peptest" - is only 80% accurate, and may not detect LPR if reflux only gets the throat and not the mouth or voicebox.

Still with me? It feels good to get all my information-overload off my head and fingers. LPR is a terrible disorder, one that only people with the disorder can truly understand. It is the CAUSE of anxiety in some people, but anxiety alone can't cause it. It's down to a physiological malfunction which tests like the ones I've mentioned seldom find since the patient needs to be starved and therefore cannot show 'realistic' results. There's certainly no doubt my anxieties will make the disorder worse, but there's no way to get LPR off my mind. It has completely taken over my life: even if I wasn't worried about it, strictly speaking it would have taken over my life anyway. I can never be the same person again - the kind of guy who could eat a healthy diet with the occasional sweet-treat without wondering how terrible my symptoms will be afterwards. Unless of course all those symptoms really are down to anxiety alone. Surely not? I mean I've tried checking as many anxiety books and websites as possible, and none of them say anxiety can be a cause. In fact many of them seem to support the idea of me having LPR, and not "natural" (for longing for better word) anxiety.

Rant. Over. Almost...

Thank you for sticking with me. If anyone can offer me any insight as to how to get my life back on track, as well as whether I've gone mad and all these symptoms really can be anxiety based, I'd truly appreciated it. I'm no longer utterly "end me now" depressed as I was before, but if things keep up this way I'm pretty sure I will be again.

[bibliophilic]

Oh darling, my heart hurts for you because I've been going through the exact same thing--including obsessive research. I looked into the Peptest (so expensive here!), considered going to see Dr. Kaufman in New York..everything.

My problems started on February 3. I coughed really hard and when I was done, I had a feeling of a lump or swelling in my throat. The feeling never went away and it made me eat extremely little for about two months. I lost so much weight and I'm still losing. I had to drop out of college and I basically didn't get out of bed for ages. I went to so many doctors who really didn't take me seriously at all. I went to one doctor who put the tube through my nose and into my throat, who saw no redness or swelling. A few doctors said it was a neck strain, some said acid reflux, some just shrugged. My symptoms are lump in throat, very uncomfortable swallowing, excessive mucus and post-nasal drip, increased sinus congestion, constant burping and bloating--yes, even when I drink water!, ear pain, heavy head, and sometimes a tingling feeling in my throat. Right now I have this awful pressure/burning at the bottom of my throat which makes me feel like I can't breathe.

A few things:

1.) Have you tried Nexium? Not sure what it's labeled as over there. Apparently a lot of people have success with it. Apologies if you mentioned it; I didn't recognize it in the list.

2.) Have you tried chamomile tea, DGL, mastic gum? Vitamin D? I read a very long, fascinating account of a woman with LPR who achieved great success with taking Vitamin D. Bonus: it can help improve mood!

3.) Do you notice a difference when you're upright or laying down? Mine is worse when upright, which seems to be a pattern in LPR.

Basically, I let these problems control my life. I'm losing my health insurance in a few weeks so I'm trying to completely rechange my mindset. It's so hard to focus on other things since it's always there! I've been playing Neopets and watching Netflix, which helps somewhat. I think I'm finally just trying to come to terms with it. I still have my "rituals" where I search for new information daily and try to figure out how I'm going to live like this. One of my problems is that it's horrible to swallow anything solid. So I'm pushing myself to try a new food every few days. I did toast a few days ago and now I'm so happy that I can at least eat that again.

It's so depressing. But we'll make it through. I wrote out a will back in February because I thought that was it for me. I'm 24 and that's ridiculous. We'll wax and wane but ultimately we'll sort it out. I'll post again if I think of better advice. Just wanted you to know that you're definitely not alone.

[Orange Lightning]

Oh darling, my heart hurts for you because I've been going through the exact same thing--including obsessive research. I looked into the Peptest (so expensive here!), considered going to see Dr. Kaufman in New York..everything.

My problems started on February 3. I coughed really hard and when I was done, I had a feeling of a lump or swelling in my throat. The feeling never went away and it made me eat extremely little for about two months. I lost so much weight and I'm still losing. I had to drop out of college and I basically didn't get out of bed for ages. I went to so many doctors who really didn't take me seriously at all. I went to one doctor who put the tube through my nose and into my throat, who saw no redness or swelling. A few doctors said it was a neck strain, some said acid reflux, some just shrugged. My symptoms are lump in throat, very uncomfortable swallowing, excessive mucus and post-nasal drip, increased sinus congestion, constant burping and bloating--yes, even when I drink water!, ear pain, heavy head, and sometimes a tingling feeling in my throat. Right now I have this awful pressure/burning at the bottom of my throat which makes me feel like I can't breathe.

A few things:

1.) Have you tried Nexium? Not sure what it's labeled as over there. Apparently a lot of people have success with it. Apologies if you mentioned it; I didn't recognize it in the list.

2.) Have you tried chamomile tea, DGL, mastic gum? Vitamin D? I read a very long, fascinating account of a woman with LPR who achieved great success with taking Vitamin D. Bonus: it can help improve mood!

3.) Do you notice a difference when you're upright or laying down? Mine is worse when upright, which seems to be a pattern in LPR.

Basically, I let these problems control my life. I'm losing my health insurance in a few weeks so I'm trying to completely rechange my mindset. It's so hard to focus on other things since it's always there! I've been playing Neopets and watching Netflix, which helps somewhat. I think I'm finally just trying to come to terms with it. I still have my "rituals" where I search for new information daily and try to figure out how I'm going to live like this. One of my problems is that it's horrible to swallow anything solid. So I'm pushing myself to try a new food every few days. I did toast a few days ago and now I'm so happy that I can at least eat that again.

It's so depressing. But we'll make it through. I wrote out a will back in February because I thought that was it for me. I'm 24 and that's ridiculous. We'll wax and wane but ultimately we'll sort it out. I'll post again if I think of better advice. Just wanted you to know that you're definitely not alone.

Thanks for replying. Yeah I've tried most of your ideas especially the vitamin D supplements, and the problem mostly occurs when I'm upright. Nexium is hardly prescribed here at all so I haven't been able to try it yet. I guess my fear is that I'd have to be on it for life anyway, and I'd still have to watch what I eat even if it did work. I'm only 21 myself, how did I lose so much enjoyment from my life already. :(

[bibliophilic]

It's really difficult. I'm working on it, but even now I'll have these random outbursts of, "Why me? I was about to finish my degree, go off for my PhD, look for a new apartment..I'm too young for this" everything was going really well for me when this started. But I guess ailments are equal opportunity providers and don't discriminate based on age or life status!

It's all rather ridiculous, really. I used to love going out with people, eating yummy foods, staying in and having a snack while watching a movie. Now I'm lucky if I can get toast down. I'm sure you can relate, unfortunately.

Do you ever have muscular pain? Since this started, I've developed these annoying pains in my shoulders, back and front of neck, and upper back. Not sure if it's related, or due to me being anxious about it all the time, or due to me not being physically active anymore.

[Orange Lightning]

It's really difficult. I'm working on it, but even now I'll have these random outbursts of, "Why me? I was about to finish my degree, go off for my PhD, look for a new apartment..I'm too young for this" everything was going really well for me when this started. But I guess ailments are equal opportunity providers and don't discriminate based on age or life status!

It's all rather ridiculous, really. I used to love going out with people, eating yummy foods, staying in and having a snack while watching a movie. Now I'm lucky if I can get toast down. I'm sure you can relate, unfortunately.

Do you ever have muscular pain? Since this started, I've developed these annoying pains in my shoulders, back and front of neck, and upper back. Not sure if it's related, or due to me being anxious about it all the time, or due to me not being physically active anymore.

Occasionally yeah, although I do try to excercise when I can. Seems to cause me palpitations as well as shortness of breath. Sometimes I have a clear day, then I eat exactly the same meals the next day and get all the symptoms back. :/

[gmatej]

Hello.
Maybe this link will help someone:

stonetime.com/health/silent-reflux-or-hyoid-bone/

BR

MAtej

[destinyumi]

Hi Orange Lightning!

I'm a newbie here. I have the exact same problems as you. I'm only 21 right now, but I feel like it's the end of the line for me. I'm really desperate and I hope you will read and reply. I want to ask if you have already recovered from your illness. I've already searched multiple times, tried various medicines and diets and went to many doctors already. It's already been a year for me. I don't want to be like this forever. Are there any advice you can give me. I really need some hope right now.

---------- Post added at 12:47 ---------- Previous post was at 12:45 ----------

First of all I'd like to say that I have read the replies to my previous posts, and taken them to heart. I'd like to personally thank everyone who has offered their support so far. However I cannot take these replies to my head, as right now it is illogical to say that I have anything other than LPR, also known as Laryngopharyngeal Reflux Disease or Silent Reflux. For anyone worried about this sort of disease, I truly apologise and advise you not to read on as what I have typed may be disturbing or cause you anxiety.

Looking at the professional websites for diseases such as NHS, WebMd and Cleveland Clinic, I match every symptom to do with the disease. These include:

- A constant stream of mucus/post nasal drip in my throat, but not in my nose. Usually worse when I wake up or immediatly after eating. Hot water, cough medicine etc do nothing to it and I think it causes a sore throat first thing in the morning
- Mucus stuck in my throat. Same problems as above. Very annoying..!
- Constant cough. It isn't forced but it needs to happen due to the stuck mucus.
- Burping, even after drinking water. It usually causes more mucus to be produced, so surely I'm bringing up pepsin?
- Bloated feeling after meals larger than, say a bowl of breakfast cereal. This is highly annoying as I used to be able to eat a lot..! It sometimes causes palpitations.
- Feeling of gas moving/gurgling up throat whenever I cough, breath in or bend over. Not quite the same as burping this.
- Shortness of breath, this only goes away if I become bloated.
- Burning sensation at bottom of throat, usually kicks in when most gassy and goes away while eating. This is probably the most worrying symptom., as it can even happen if I don't eat anything at all, sometimes first thing in the morning.
- Anxiety/Racing thoughts only kick in when the above symptoms do.

Now recently I had an endoscopy and a barium swallow. Both of these are clear, however 85% of people with LPR have clear tests like these, so they prove nothing. I admit I have tried 'Googling' again, but can find nothing that suggests I have anything else other than LPR. Even this very forum is fond of saying I am likely to have LPR, although some people get it mixed up with GERD. To try and relieve my anxiety I have assumed the worst; I make myself believe I have LPR and have therefore tried adhering to the treatments for it. That means PPIs, H2 Blockers, Traditional Remedies, Diet Changes and Lifestyle changes. However these aren't working at all. Here's everything I've tried for the last 7 months and counting:

- Diet restricted to ludicrous levels such as bran flakes, salmon, potatoes, chicken salad, garlic, nuts and seeds and other bland foods. No citrics, caffeine, chocolate, mints, alcohol or tomatoes and very little sugar or dairy. No effect, even on days with NO sugar or dairy.
- Lifestyle changes include raising the head of the bed, exercising more, eating less more often, getting more sleep and stress relieving techniques such as antidepressants, hypnotherapy and CB. No effect, except for 10 minutes after hypnotherapy maximum.
- Traditional remedies such as apple cider vinegar, baking soda/sodium bicarbonate, increased water intake, throat lozenges, ginger, manuka honey and natural liquor ice. No effect. The well known "baking soda test" suggests I don't have acid reflux, and yet the problems continue.
- Medications such as Setraline, Diazapen, Lansorprazole, Omeprazole (both PPIs at double dose), Ranitidine, Gaviscon Advance, normal Gaviscon, Tums and others I can't remember. Only Gaviscon Advance has any effect, and it's very little but it also makes me more bloated. Otherwise, no effect.

LPR is caused by the stomach enzyme Pepsin. And Pepsin is well known for causing esophageal/larynx/lung cancer. In fact more people with LPR are likely to get cancer than those with GERD. Just ask Dr. Jamie Koufman, a resident expert in the field. Yet even she can't begin to figure out how to cure this disease, beyond ideas such as alkaline water and diets that resemble that of a locust. Worse still these "cures" don't work for everyone, and it is notoriously difficult to diagnose LPR. ENTs can check your throat and voicebox for damage, but other diseases besides LPR can do the same kinds of damage. Furthermore 24 hour PH tests - the usual gold standard for diagnosing LPR - need to be specialised (double-probed) and don't always pick up LPR either. Even the latest medical advancement - a rapid spit test by a team called "Peptest" - is only 80% accurate, and may not detect LPR if reflux only gets the throat and not the mouth or voicebox.

Still with me? It feels good to get all my information-overload off my head and fingers. LPR is a terrible disorder, one that only people with the disorder can truly understand. It is the CAUSE of anxiety in some people, but anxiety alone can't cause it. It's down to a physiological malfunction which tests like the ones I've mentioned seldom find since the patient needs to be starved and therefore cannot show 'realistic' results. There's certainly no doubt my anxieties will make the disorder worse, but there's no way to get LPR off my mind. It has completely taken over my life: even if I wasn't worried about it, strictly speaking it would have taken over my life anyway. I can never be the same person again - the kind of guy who could eat a healthy diet with the occasional sweet-treat without wondering how terrible my symptoms will be afterwards. Unless of course all those symptoms really are down to anxiety alone. Surely not? I mean I've tried checking as many anxiety books and websites as possible, and none of them say anxiety can be a cause. In fact many of them seem to support the idea of me having LPR, and not "natural" (for longing for better word) anxiety.

Rant. Over. Almost...

Thank you for sticking with me. If anyone can offer me any insight as to how to get my life back on track, as well as whether I've gone mad and all these symptoms really can be anxiety based, I'd truly appreciated it. I'm no longer utterly "end me now" depressed as I was before, but if things keep up this way I'm pretty sure I will be again.

Hi Orange Lightning!

I'm a newbie here. I have the exact same problems as you. I'm only 21 right now, but I feel like it's the end of the line for me. I'm really desperate and I hope you will read and reply. I want to ask if you have already recovered from your illness. I've already searched multiple times, tried various medicines and diets and went to many doctors already. It's already been a year for me. I don't want to be like this forever. Are there any advice you can give me. I really need some hope right now.

[Maraki]

Hello, unfortunately since last May I am experiencing the same symptoms of LPR.
In my case everything started after the use of antibiotics( coincidence??).
All summer I had a crazy sanesation of lymp in throat, burning throat and swollen lymph but now this has improved. But I have other symptoms which insist.
Especially, I am burping after even drinking water or liquid or with movements, I have escess foamy saliva in mouth and I have developed rhinitis. I also have occsionally hoarseness
I have done all the tests, manometry and phmetry-impedance test, barium swallow.
The results showed multiple events of weakly acidic reflux and nomral LES pressure. The doctor told me that I shouldn't experience symptoms but I have all the atypical symptoms of reflux disease.
I am currently taking riopan gel and I asked my doctor to prescribed some probiotics.
I am 30 years old and before the antibiotics I never was like this. I am depressed and desperate.
What symptoms do you experience? Have you been diagnosed with LPR? didi you have any tests all this year?
Maria