This one's gonna be a long one..! - LPR: A chronic, troublesome puzzle

[Daxter]

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. ;(

[Hidden]

Thats a problem, I dont have any tips on this one but,

Dont ever underestimate anxiety though, it would cause me to blackout and stop my heart, ( 13 seconds when tested ) only took them 20 years to realise it though. Thankfully it is extreemly rare, the specialist wrote a paper on me, lol. The put a pacemaker in to stop it, but it didnt stop the anxiety

The only thing I can suggest is some serious meditation, because as we slow down our body, we are then able to repair things better. Also its good for relaxation and stress reduction, which sounds like whats needed too.

Hope you get better soon

B

xxx

[kamin4]

It has been a few months...are you feeling any better? I'm suffering from it too. Very depressing.

[Foreversick]

Omg. I suffer from these awful belching spells all day and all night. It never lets up. I feel like it is a brick in the pit of my tummy. I cough but can't get any spit up. Throat is very red but not sore. I can't eat or drink without suffering even if it is the smallest amount of soup. I can't swallow anymore unless I burp. I wretch as if to through up but nothing gets by my throat. I need to take heart medicine, and other medicines for high blood pressure, hitis hernia, depression, statins, lansoprasol, diabetes for the past month controlled by tablets. Arthritis, cervical spodilosis, Fibromyalgia.now need to wear a hard neck brace to be worn all day. Pain killers, Voltorol gel. Diazepam, sleeping tablets. I recently had a bad cough and wheeze flu symptom. Since that I have had all the problems, cough can't get anything up. All of the above first 4 lines. When I went to see the doctor I was given 3 different antibiotics, steroid tablets, inhaler, been back since said nothing is changing. He now tells me I have post viral syndrome. Didn't look at my throat. Told me to come back in a few days. If I'm not able to take any medications again I will be going up to A & E tomorrow as I find it even difficult to swallow my own saliva. So I don't know if you have any of my problems of late. I hope I've helped in some way.

[hebbyh in reply to Foreversick]

I am just the same as you, i feel like I'm in hell! Did you ever get any better? and if so what helped? I have been like this a year, I am now only eating blended soup, rice pudding and porridge, so hard to swallow. Its affecting my ears really bad and the tinnitus is horrendous! Please answer if you can. Heather.

[Gallee]

I suffered with constant burping. Doctors put me on ant-acids and problem got worse. After much research I came across an article by a doctor that said they have it all wrong. It's not excess acid that's the problem it's the lack of stomach acid. Symptoms are identical. The next day I baught some digestive enzymes with betaine hcl. Amazing. Burping stopped with first meal with enzymes. After a hospital admission with another problem I discovered what caused my burping. I was fitted with a nasal gastric bag. (Tube In nose to drain stomach fluid.) for three days I was ok. The discharge from my stomach was Amber coloured. Then it changed to green (bile). Within minutes I was burping for England. Used syringes to evacuate my stomach and burping stopped. I believe that undigested food due to lack of stomach acid or digestive enzymes gases off in the bowel. This pressure forces bile from the bowel back into the stomach where it reacts with stomach acid. What do I do now. Take digestive enzymes with food. If I forget and start to get the burps I take a Zantac which stops the reaction of the bile in my stomach. I also believe that constipation can cause the bowel to back up and cause a similar reaction. If I don't use the enzymes I can become quite ill. Just had a bout of illness viral I think that left me with a constant cough. Just tried adding some alkalising drops to my drinking water haven't coughed for over one hour. Wandered if cough was down to pepsin embedded in throat. I have hiatus hernia and normally sleep on a sloping bivvy bed. Xmas visitors meant I had to sleep in my normal bed so probably had some reflux. I also avoid nightshade foods that cause a lot of health problems. If I do all this I'm normally ok. Hope you find some of this useful.

[sassafras]

I'm pretty sure it's something to do with your balance of neurotransmitters and this can create an imbalance of gut flora. try taking probiotics. there are lots on the market. make sure you get a reputable brand. many yoghurts have Lactobacillus acidophilus but i'd go the capsules. more concentrated.

incidentally, neurotransmitters are what cause anxiety too, but a number of antidepressants can cause burping because they change your neurotransmitters.

I hope you get this - it's an old post but I really felt for you. I've experienced a similar thing. It drives you nuts and doctors don't seem to know about it. I worked this out myself.

I'd love to know if it works for you. it's also natural!

best wishes,

Sam

[warmchai]

hello I'm starting to think the same thing having something to do with neurotransmitters?? I have the exact same symptoms and so tired of clearing my throat.. what kind of probiotic do you use ?

[Leggo]

Hi I feel your frusttration I have had this horrible disease for two years hads just about destroyed my singing voice I have tried everythingalkaline water works about 50 per cent I have found colonic irrigation/s ( you need at least three ( to begin with work for me 100 per cent down fall they are costly 110 dollars each with a rebate of private health around 44 dollars Aus MBP

[Hidden]

As far as the Alkaline Water, I believe you can add 1/8 of a teaspoon of baking soda per cup of water to make your own. Also, if you suffer from Acid Reflux type symptoms with the LPR, you might want to try vitamin U. Do a search for that on Amazon and read the testimonies.

TC

[Sallygraciex]

Hi,

I don't know whether this post is still active but thought I'd leave a reply anyway

I've had the same symptoms for around 5 years, although, over the past 3 months it has got rapidly worse. Taking over my life.

I have been researching (because I haven't got anywhere with the doctors who look at me like I'm weird when I explain my symptoms) and have come across the linx procedure. This is a surgical procedure, that if successful, can stop reflux. I feel this is my only option as, like you, I have made all the lifestyle changes and have taken all the medications prescribed and yet had no relief.

I'm just wondering how you are doing now, and if you have ever thought of having this procedure too?