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Acid Reflux / GERD Message Board


Acid Reflux / GERD Board Index


This is especially relevant to anyone whose LPR began in an acute way (you can remember the day all the symptoms started) and especially, after or during a virus like a cold/flu or bronchitis.
However even if it began suddenly during a period of high stress or heavy binge drinking/smoking/aspirin, or if you had a surgical breathing tube pulled out and it all began that day, this probably applies.

I don't believe we actually have reflux. Studies in the last 5 years are increasingly calling into question the "difficulty" of making an LPR diagnosis, particularly since we mostly have no heartburn, no previous acid problems until the acute onset, no signs on barium swallow or endoscopy. Well, that's because it's not reflux!

Don't you find it hard to believe that reflux is somehow causing these "injuries" which don't even show up on larynx exams, and acid and bile is supposedly coming up, yet you can't feel it? That's funny, last time I vomited in my mouth, I kind of felt it. Half the stress of this disease is knowing that your diagnosis is bunk. And there's a reason. Periodically, people have always showed refractory coughs, throat clearing, globus problems, and there was no way to treat or explain it. So in the 1980s, a smart young doctor named Jamie Koufman started advocating "acid reflux" as a waste basket diagnosis to treat all of these people. Somehow, it caught on in the larynology business and is pretty widespread, just because usually doctors can solve a person's throat problems easily. When they can't and nothing really noticable shows up on the exam......well........ it's reflux then, so take your ppis and don't come back to his office for a half a year! That will teach you, for having something that doesn't show up on an exam.

This is, according to the most recent studies on laryngeal sensory neuropathy, a nerve related problem, caused by damage done by a virus or idopathically (medical term for "who knows how") in the larynx. The larynx is then set off sending intense wrong messages to the brain, and causing the larynx to overreact to anything causing the globus, the throat clearing, chronic cough, etc. So why are you taking ppis and why do trained ENTs tell you something else? It's because the concept of laryngeal neuropathy has only been even vaguely known about for 10 years, starting with Murray Morrison's paper on the irritable larynx syndrome in 1999.

You know the tell-tale red streak on the pharynx. More than 80 percent of healthy randomly selected people had that in a laryngoscopy examination. The ppis work as well as placebos. In the last 5 years a lot of studies have been done, talking about laryngeal sensory neuropathy. They treat it with drugs that help with pain and especially work on the vagus nerve (elavil, lyrica, neurontin) and the results are something like 70 percent to 90 percent of patients improving, even IF they don't show noticably motor dysfunction in the larynx.

Long story short, there are a number of articles you need to read on laryngeal sensory neuropathy, also known as post viral vagal neuropathy. The symptoms of this disease sound......well...... a lot like the symptoms of your apparent LPR. There is hope for us getting out of the mess, but I think you almost have to print this articles out and bring them to your next doctor's exam, if you don't have GERD. It's worth a try anyway. You are already wasting money on the double ppis. Why not give small dosages of pregabalin 75mg or elavil 10mg a "trial". I bet you'll notice results in less than a week.

So here are a few starter articles that you all must see. This is an article from "ENT today" in late 2008 that you can get by just searching "ENT today pregabalin shows promise for treating laryngeal sensory nueropathy". Strangely, maybe because the stupid idea of LPR in people without GERD or any signs of reflux in the esophagus, is so well-established now, they don't even really debunk LPR. But you'll notice the symptoms of Laryngeal sensory neuropathy sound IDENTICAL to our bloody LPR.

Read that, and tell me it doesn't sound like those of you with an accute onset of LPR aren't rethinking this whole useless runaround you've been doing for months and even years, wasting money and time on low acid diets and especially on the USELESS ppis.

Continue to search on the terms "laryngeal sensory neuropathy" or "post viral vagal neuropathy". Articles and abstracts will show up, about how people with "chronic cough/globus/chronic throat clearing/chronic tickle in throat/laryngospasms" get relief with taking neuropathy drugs. The important thing for doctors to determine if it is likely LSN, the articles say, is patient history. That means, if the patient suddenly came down with a bunch of alternating, side-by-side throat symptoms during a cold, and never exhibited them before, and if the patient can remember more or less the precise day of the onset, that means the doctor should highly suspect laryngeal sensory neuropathy.

Sometimes there is actual noticable movement dysfunction from it, like a paralyzed vocal fold or vocal chord, or you uvula moves abnormally. That's called motor neuropathy. But more often, it's not detectable in that way, which means it's sensory neuropathy. The good news is that BOTH kinds respond very highly to treatment with Gaba-a agonists and tricyclic anti-depressants, both of which calm down the vagus nerve. The point is, these symptoms are identical to what we call the LPR symptoms, but really it has nothing to with reflux. It's a hyper-sensitive misfiring larynx, it's nerves or a nerve damaged from the virus. If I knew all of this before, I would have been a lot more diligent with taking my vitamin C and all that. I used to think colds were just harmless inconvenience. Now I'm afraid to get another one.

In one article I saw, 10 out of 10 patients who stayed on pregabalin had symptom relief of their Lp........ I mean, laryngeal sensory neuropathy.

How can this be? How do nerve drugs treat our invisible tiny drops of aerosole bile reflux? Jamie Koufman and others stick to the idea of LPR, but you know there are many doctors out there who don't know about, and a lot of others who don't even believe in it.

I'm not a doctor or an expert. I'm just trying to find relief for myself and others suffering like me. But I think, the doctors would be in a better position for treating patients if they knew more about laryngeal sensory neuropathy, and less about LPR and its so-called "treatments"...

One more article:

Evidence for Sensory Neuropathy and Pharmacologic Management by Scott M. Green and C. Blake Simpson (from 2010) . Notice how recent all these articles are???

Based on the very high success rates for treatment of laryngeal sensory neuropathy, and the fact that the symptoms are identical to any sudden onset LPR, I believe that this should be the first road of treatment.

There may actually be such a thing as LPR in people with reflux, and it may cause a bunch of non specific symptoms in the larynx. Maybe. The problem is, we are all getting treated like we have acid reflux, and it's simply, totally FALSE. So please, educate yourself, bring these articles to your next doctor's meeting, and if you get relief with neuropathic treatment, post it on these pages and help others who are going to keep coming down with our problem in the future. And if it doesn't work, don't worry. The ppis don't work either. There's an article on that (2010 published) that says placebos often beat PPIs in double blind studies that aren't funded by ppi makers.

Thanks for your time. And please for the future of people with our condition, do your utmost to get on a "trial" and inform your ENT. He probably doesn't know or care about this, or he'd already have you on neuropathic drugs, so you would not be visiting his office all the time.

Best of luck. Let me know your feedback. Keep in mind, the reason you might not have heard about Laryngeal sensory neuropathy is because it's a very new idea (with exciting results), and the waste-basket diagnosis of GERD/LPR in the face of ALL the evidence that it's wrong keeps ENTs from moving in the right direction.

::cool:
Saratron,

here is a couple levels of what I call evidence.

Before I start, can I just mention that ppis are also made by drug companies. I have nothing to do with them, and if you think I'm immoral to plug a type of drug, what do you think of your own ENT, who plugged useless drugs to you for months or years, while you suffered.

Choking, throat clearing, globus.... It doesn't sound so bad, I admit, if you've never had it. Those who have it are in torment however. I wouldn't joke about this, and I'm trying to do the opposite of what Jamie Koufman and other ENTs did, namely, send you on a wild goose chase which prolongs your suffering.

I don't think you get this or want to get this, Saraton. I have "LPR" for the last two months. It's relentless. It has negatively affected my life. I'm trying to get as many of us as possible to a better life.

I just feel it's not reflux.

Let me explain. Today, I met with an ENT today in Germany after a month. By the way, I smoke and drink every day, cause I know it's not reflux so I don't give a "care"

It came in with a virus attacking my throat. I have throat symptoms after that. The origin, and cause, of my problem is the throat. If you can't feel the accuracy of that, enjoy your ppis...


Anyway, he looked at my throat. It looks perfect he said. My esophagus has no esophagitis, no HH, no signs of freaking reflux. Yet, I got a virus which aggressively attacked my........my ...... my THROAT!!!! now I have ongoing throat problems........ So I guess I have to cut down on my onion rings, right?

I met a neurologist today, and he asked me to email him medical journal articles written in the last two years, so keep eating your mulberries and whey, and sleep standing up, with no heartburn.

How many patients will your doctor get like you?

80 if he's really old.

How many strep patients?

Thousands.

So you are in deep crap right now if you want to pretend this is reflux.

Besides, imagine it was reflux. What do you want? To stop the reflux OR to stop the symptoms? I think the answer is obvious for everyone on this board.

I'm not a shill for drug companies, for god's sake. I'm trying to help myself and people like me, because I know first hand what a struggle this disease is.

I've found 4 people minimum on message boards who have specifically talked about ending it all. What GERD patient jokes around about that?

What IBS patient does?

But in the case of neuropathy, you find people who do discuss that. So why are people so desperate sometimes with LPR, if it's just GERD???? Because it's neuropathy, and that wears down a person's soul to be in pain all the time.

No one who had this disease would be that cynical, frankly. I'm not a shill, I'm trying to help. Get on lyrica for a week, and then feed me your certainty that this is acid reflux.

If it is....... why does it come and go randomly for people, UNTIL THEY GET A COLD OR FLU. Why does it relent for people on neurontin, or bonine, or reglan, all of which mess with the nervous system? They all say it's because they sleep upside down and only eat yogurt..

Why does drinking and smoking improve the symptoms of those who dare to do so, even though it causes reflux? Why does Mcdonalds help our terrible LPR?

I'll give you all a challenge this week. Do the worst things you can to aggrivate reflux. Then consciously decide "is this really any worse of a feeling than i had last week when i slept on a wall and only ate popsicles???"

I'm trying to help me, and I'm trying to help you. I hope you get that, and I understand your anger. I'm pretty mad too.

Stephen





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