Thread: LPR as something else, falsely being treated as acid reflux? Probably...

The biggest study on ppis, and the many in recent years that have shown it was no accident (Vaezi et al.), is enough for me to believe that ppis work as well, but no better than placebos for the treatment of laryngeal symptoms of LPR, regardless of which of the 20 LPRs it actually is.

I could be wrong, because there are those on this board who (rarely) say ppis sufficed for them.

Still, the kind of tests we are talking about are basically less comfortable than a spinal tap.

If all they can offer after that is ppis, I'd rather just say, "Ok, give me your ppi prescription." and then not use it.

A lot more people would be better off if they started with a lyrica and klonopin prescription for a few months, I'm guessing. I don't know why doctors haven't dared to do this yet. I guess it's the same reason cancer patients have to start screaming before they get morphine...

Let us know how it goes.

PLEASE keep us updated. If lyrica does or does not help, be honest and let us know. Thank you for your outside of the box thinking. While I may not think you are correct at the moment, if this treatment does work, it would be a God send.

Very interesting, Wicked lady!

I'm always excited to see this because here we have the symptoms of "LPR" to a tee, but the actual reason is something totally different.

I think if they remove it, the symptoms should go away. Did the doctor tell you that the symptoms won't go away? What reason do you have to believe that. Even if they persist, you can still use klonopin, and other sort of nurabing drugs to make it better. Even tylenol helps. The great thing is, you won't be on any "reflux" diet or thinking you can't take xanax because it's bad for your reflux and such.

That is the tragedy of LPR. Not only is the diagnosis often wrong, but if someone gets "diagnosed" with LPR, they won't do things to help their life like eating whatever they want for stress reduction, because they keep thinking about this mystery reflux and thinking their symptoms are related to it. That's what makes it such a tragedy.

That's great to hear your doctor identified a real, physicallly identifiable cause. Please update us on whether the symptoms actually improve after the surgery (give it a week or so). Please don't just go on with your life and forget the rest of us.

This cystal sebacea might be another thing for us to ask our ENTs to look for. Can you tell us more about it.

Very useful post!

Personally, when my "LPR" symptoms were at their worst, cancer wasn't an immediate fear of mine.

My fear was more related to the immediate and day to day quality of life reduction. Since taking lyrica for now only a month, I can say confidently I FORGET that the whole stupid thing ever happened to me for long perioRAB.

I just don't get why people in immediate, constant pain or discomfort from "LPR" worry about some long term future problem like cancer, when the symptoms they have NOW are the same symptoms that get people into the hospital to discover they have esophageal cancer.

That's right. LPR symptoms mimic the very symptoms of esophageal cancer. To be a little tongue in cheek, by the time someone with "LPR" got cancer of something in the throat area, they'd be a pro with it anyway.

I think the refractory symptoms that have become known as LPR are basically the same ones you'd have with the cancer, at least in its early stages. And the point I'm making is: You should be concerned solely, IMO, with the resolution of this immediate problem, and not care at all about some future tiny unproven threat of cancer. Who said it caused cancer? Jamie Koufman. Why did she say it? Fear mongering? To get more suffering people in her office paying 900 dollars for a consultation?

She is the source of LPR, and I don't see a lot of people coming on to the LPR board and posting about their throat cancer. Maybe I have to do some more research about that by searching cancer boarRAB. But I suspect the cancer threat of LPR is about the same as the cancer threat of working in an office.

This is especially relevant to anyone whose LPR began in an acute way (you can remeraber 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 nuraber 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 remeraber 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 kinRAB 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 colRAB 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.

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I just want to add something that is really important to explain my point of view that we should look first to the idea of neuropathy, even when LPR seems to be a real and common problem. LPR must be real when you consider that some people's LPR symptoms went away after surgery, or that their LPR symptoms flare up in relation to their GERD symptoms.

In the largest ever PPI trial by Vaezi and other doctors, using placebos and a double blind (neither doctors or patients knew if they had a placebo or a real ppi), the results were disastrous. I think it was done in 2007 or something. 15% of the ppi people got better, 15% of the placebo people did. And there were hundreRAB of patients. It was kind of a disastrous result for those who cling to ppis. The study was strictly for those who had LPR laryngeal symptoms.

On the other hand.... In the case of recent treatment studies of suspected laryngeal neuropathy, the patients had complaints that were totally various, just like how we "LPR" patients always have to ask each other, "what are your symptoms?.." In the studies by Sycamore and Halum, and Peak Woo and Lee, they treated symptoms as diverse as chronic cough, painful speaking, globus, chronic throat clearing and hoarseness, painful swallowing, etc. as neuropathy. They also treated people whether they tested positive for neuropathy or not (motor dysfunction). Lee and Woo had improvement for 68%. In the case of Halum and Sycamore, who may have done more than 1 study, the results were somewhere closer to 90%.

In one study I saw and can't remeraber now, 38% of people who had no sign that they had neuropathy still improved with pregabalin. So that still beats the results of the largest double blind placebo vs ppi study ever done. You still have a better chance taking these kind of drugs than ppis is what I got out of it.

I mean, hypothetically, people who don't have nerve damage might have a better chance of improving with nerve drugs than ppis, even if reflux is the problem. That's how I read it anyway, and I understand if people disagree with that. However, don't forget, you could corabine reflux drugs nerve drugs/anti-depressants with ppis and just cover all the bases.

I just am saying: If every person who came into an ENT's office with our various complaints were put on a trial of 3 or 4 months with gabapentin/pregabalin and elavil, I wonder if our overall rate of improvement wouldn't be a lot higher than it is when we are defaulted to ppis. That would be interesting to see....

The Problem with PPIs is that they could hypothetically create a problem that wasn't there to begin with. Imagine this situation:

A person with a healthy digestive tract and no acid getting into his larynx by mysterious pathways, gets a cold. The cold swells the tissue in the larynx and somehow attacks the tips of nerves, or the nerves are set off into some sort of hyperkinetic pattern.

The person, alarmed when his cold goes away and the throat symptoms persist, goes to an ENT.

The ENT doctor looks at the larynx and sees a red streak, the patient's cold having just ended. The doctor immediately prescribes 6 months of 80 mg of nexium per day.

Suddenly, in a healthy functional digestive tract, this patient is taking double the amount of proton pump inhibitors that a severe GERD patient would take. He also takes it continually for half a year.

You don't think that's going to cause serious digestive issues for this person, whose digestive tract was never the problem in the first place? They will have so much gastrin in their blood, and the pumps will go into a state of trying to overcompensate for all the acid suppression.

Then the patient will try to quit his ppis after a while. But wait, now he has chest pain and indigestion when he tries that. For the first time, our patient starts to get severe heartburn. He goes back on his double dose of ppis.

"I guess I did have heartburn, and the ppis are treating my acid reflux problem. I better stick with this and just watch my diet better." says the patient, and the vicious cycle continues.

Thank you for your insight and information. I had the NISSEN funduplaicon (spelling) to fix the hiatal hernia on 15 Nov 2010. The surgeon was one of the most epxerienced and respected in Argentina for this surgery and is chief of abdominal surgery at the remier hospital in Buenos Aires. OK enough of that. Anyway, I had a hiatal hernia, severe acid reflux, barretts. I started taking PPI's about 4 years ago when I was first diagnosed with this problem. I had acid reflux since I was very young. Anyway, over the last 2.5 years I developed a throat clearing problem to the point of insanity. I consulted multiple ENT, that just tried to treat it with antihistimines to the point where it almost burned a hole in my stomach. He really didn't know what he was doing. I conducted a lot of research leading me to the realization that this throat clearing was likely caused by the upward flow of acid from the stomach. But I did not ewpericen heart burn probably because the anti-aciRAB suppressed it. After consulting three gastro intestinal doctors and two surgeons explaining this throat clearing problem coupled witht he documented medical evidence of hiatal hernia with barretts they recommended surgery. However, my main intent to have the surgery was to not only stop the acid reflux but this dam throat clearing problem that has depressed and isolated me from social settings. I have to work but it is a real painf ro my co-workers not to mention my fa,mily who all have to live next to a freak that is always clearing his throat. I had the surgery on 15 Noveraber 2010 and three days afterwarRAB when I begain to drink thicker liquiRAB and soups the throat clearing reappeared. It is now 14 days after the operation and everytime I eat or drink something the throat clearing sensation starts. I consulted two surgeons about this problem prior to my surgery and both said that I could expect to have the throatclearing for at lesat 3 - 6 months post surgery because it is a"reflective resposne of the esophogus or something like that". At this point I am beginning to wonder if that is true and that the throat clearing was never really caused by the acid reflux. After reading your post has made me begin to doubt the underlying cause of my throat clearing which I gathered was from the hiatal hernia and massive reflux. Anyway, I will do mre research on what you said it could be if not cuased by acid reflux. Any response woulod be greatly appreciated. David

Ok, I understand. You make a fairly convincing point. However, say there was 50 reflux events per day and you were going to get cancer later on (which is not highly likely even with barretts, they say)....

The main thing then in life should be quality, rather than quantity. I couldn't care less if I live a nuraber of decades now, if I have this every day of my life. I would gladly give up 2 or 3 of them to live the others without symptoms. Even if people with GERD somehow progress to LPR, the main issue has to be, for me, symptoms. The relief of all those symptoms is the all that really matters. Burn the throat to a crisp, but don't let the person know about it. What about the thousanRAB who get esophageal and laryngeal cancer every year? Why didn't they feel anything up to the day they got it? I envy them for that. Maybe that's where nerves play a part. And that's why nerves are all I care about addressing, if you can see my point.

That said though, even the best ph tests are being called into question in recent articles, because healthy patients can also post a high nuraber of reflux incidents, and they also have the burnt throat appearance on being examined.

In your case, I'm glad to hear you have improved somewhat. I"m sure you'll do what is right for you, and the most important thing is that you get a resolution of your symptoms, however you get it.