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

  • Thread starter Thread starter Seeking Sunrise
  • Start date Start date
How can LSN be diagnosed? Might be worth checking out.

I did pretty much every test availble for anything with related symptoms, had my tonsils taken out, ruled out post-nasal drip, had various tests for copd or other lung problems... nothing. I do have a hiatal hernia and about 50 reflux episodes per day.


I've been tested for esophageal cancer, none there so far. The tissue damage is consistent with acid reflux damage however. My esophagus, larynx and especially my throat are a mess.

It's been going for 8 years now, 6 of those were untreated because no doctor found out what it was. Since I'm taking PPI it's gotten considerably better, but still not "good". With so many years of acid damage, I will almost certainly have cancer of either the larynx, lung or esophagus later in life.
 
Phil,

I really feel the need to jump in here. An increased risk of cancer still does not mean cancer is actually LIKELY. Even among people who develop full-blown Barrett's Esophagus, only 1% ever get cancer of the esophagus. I've never seen clear evidence that acid reflux can lead to cancer of the lung or larynx, but even if it can, it's considerably less carcinogenic than smoking, and only 1 in 3 lifelong smokers gets smoking-related cancer.

It's something to watch for, and it's a reason to control your reflux as well as possible. It is NOT a given.
 
Peptigon was briefly released in 2009 I believe it was. Or it was not approved in the USA, but on some corrupt place like the Isle of Man (where all garabling companies come to escape the law) it was approved or some product like it was. It was nothing more than eye drop gel. I might have the exact details of this story wrong, but the gist is right. Peptigon is a fraud and can't be released or sold on the internet. Probably cause the people behind it would get their butts sued off.

The problem was it was just the same stuff as eye drops. That is to say, it was a complete fraud. It was taken off the market, most likely not because Jamie Koufman wanted it to be taken off the market. More because it was false advertising, and it probably had to be taken off the market.

Peptigon will not be developed ever, I suspect. A lot of people clung to that hope. Back in 2008 they were waiting for it, wondering why it wasn't coming out yet. That's one of the primary reasons, one of many, that I suspect people should take what Koufman says with a big grain of salt.

She makes a lot of money off of people with these symptoms. I'm surprised she hasn't developed a "special LPR pillow" yet. Or if not her, some other doctor. When are we going to get our LPR curing pillow?
 
Here is something weird, a story from my past. Take it for what you will.

When I was a kid of 11, someone close to me died of cancer. I became totally freaked out about skin cancer afterwarRAB. I started to stare at a raised spot on my skin, believing and dreading it was cancer.

Lo and behold, the spot actually started to change and spread and it's color even completely shifted. Then it fell off, and as all this happened, I was filled with the most horrible dread. When it fell off, the fear about cancer just went away.

This old memory keeps running through my mind as I go through this experience with LPR symptoms, and read about others' experiences.

Is it possible that the weird sensations translate to a mental obsession with the throat, and that in turn, and neurotic behaviors like chronic hacking, throat clearing, constant swallowing actually start to wear down and transform the throat environment over time? That is, can the mind actually cause physical changes in the throat, almost like stygmata or something?

Anyway, it's just an idea that runs through my mind. Regardless of the mental component, we still all need relief of a real physical problem.
 
well, it is pretty well known that stress physical and mental (known AND unknown) can bring lpr and gerd on...but i strongly disagree that antidepressants are the solution for everyone.....STRONGLY. I just came from that route....i wouldn't be here if it wasn't pure hell....and like everything eventually your body builRAB a tolerance AND then you have a whole new problem....that you still have to face. Thats a whole other thread probably on a different board but psychiatric drugs are hurting many, many people. I do wish you much success of course! :) and hope you find it works for you but those drugs just tore my mind and body apart (especially liver), i will not be going back to them or any version. I know i am taking the longer route, without chemical onslaught but i'll get there, i know it ;)
 
well I have to tell u ...my doctor find if, after I told her where to look it was like this.. me: please help me !!!I feel something right here deep in my throat !!! doc: but honey your throat is fine it s not red everything look just fine?! ... me : but it is deeper down my neck (I explained the spot ) :( and that was 2 months after my problems started... after that doc lucked with the bizarre tool with (a little glass circle on the top) and he saw that little bastard :) the thing is that same doc month before sent me to alergologyst and never looked my throat there... but she didnt mention LPR either .
she wanted bacteria analyses from my nose and throat and alergologyst opinion ...
Did u have laringoscopy ? or some exam like I did of your throat ? while she was looking she was pulling my tongue very hard and all the time i had a feeling that i will throw up on her ( i guess just a reflex ...:D) ...do u feel some pain or is it more like aching on that spot? sometimes i felt it like i have something that is moving down there ...later the ORL
specialist said that thing is "movable" ...so my guess is it is like one grape and maybe when i eat or speek it can change a bit it s position and causing that feeling...
I hope it helps ...tell me more about what u feel right now ...so we can compare ...
I hope we are not bothering anyone with this .... Oh I have to add that before doc found it ... my family ,other people, my internist doc ... they were all like ...oh honey
maybe it is just the feeling? there is nothing u see? u are fine ... your tiroid is fine , your throat is fine .... :P
 
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
 
Hi Seeking Sunrise,

Your case sounRAB very similar to mine. Last February I suffered two severe colRAB within a three week period. After the second cold, the cough lasted for nearly three weeks. Since then, I've had serious problems with my voice box - globus, excessive throat clearing, chronic throat irritation, painful speaking, and pain in my pharynx. An ENT unofficially diagnosed me with LPR, which I thought was odd due to the sudden onset of my symptoms and the fact that I have never in my life experienced heartburn. The only problems I've had with my digestive tract were occasional bloating after eating a heavy meal. I started taking PPIs in the middle of August and about a week after taking 80 mg of Prilosec a day, I started to feel considerably better. After six weeks, I started to feel A LOT better. However, the pain never fully subsided and neither did the other symptoms. Then, I got sick again in October. After about three weeks, I started getting some on again/off again burning in my larynx. I know that this was partially due to my use of a voice supplement called "Clear-Ease XL," which contains proteolytic enzymes to help thin mucus. The result was that it burned my throat so badly that my usual pain was three times worse for about a three and a half week period. I'm just starting to feel somewhat better, even though I continue to feel pain in my voice box, particularly upon speaking.

I think that LPR is PART of my problem, but I certainly don't think that it's the whole problem. I read over several of the articles to which you alluded and you may have provided me with an important piece of the puzzle. It had occurred to me that my pain could have been caused by nerve damage, but I didn't know how to explain that to my doctors, and I didn't think they'd be able to treat it with anything other than conventional painkillers, such as vicodin. I'm going to speak with my GP about the possibility that my condition is "Post Viral Vagal Neuropathy" and suggest a trial of Lyrica. I'll let you know what happens.

Thank you for all the research.
 
I can't tell you how many times I've read this same sad story.

Gerd occurs in what, 10 to 20 percent of the population?

So logically, 10 to 20 percent of LPR patients have it too...... That doesn't mean LPR has anything to do with GERD, if you get my drift.

I sometimes feel that if Jamie Koufman had never started her bs campaign to get acid reflux recognized as the cause of throat symptoms, then better doctors than her would have more aggressively searched for the cause of this WITH better technology.

Then, around 2000 AD, they would have reached the conclusion that this is either psychological or neurological, or a subtle mix of both.

Then proper treatments would have developed in the last 10 years. Instead, they will develop in the next 10 years, so hold on for a @#$#$@#$ rough ride. And Jamie Koufman is the one person on earth I sincerely wished had this. In my bones, I wish she had this.
 
Thnak you for this. I had to do my own research to figure out what I've been dealing with. My PCP, of course, tells me its GERD...but I had no heartburn, no reflux..etc...just the constant throat clearing also nasal drip. It's only gotten worse this past summer and I actually didn't know I cleared my throat so much until my parrot started to do it then I heard my granddaughter mention the "Skylar" sounRAB like Nana. But I've just noticed it alot this past summer. I thought allergies, sinus, whatever. Took everything for it...Nexum, zantac, claritin, mucinex...I have a regular drug store in my medicine cabinet.

I kept thinking that nothing was helping me. So did some research on my own. I found LPR and "BIBGO" that's what I've been dealing with.

I remeraber, also, when it first started. I had an endoscopy and colonoscopy in 1998 and remeraber the anesthesiologist pulling out the breathing tube and thinking...how my throat hurt. Ever since then, its been sensitive and worse with time.

Thanks for your info... I finally did find LPR last year on my own but was so shocked to know this is almost a new illness that drs don't even think about and like you said, diagnose all of us with GERD. I had no heartburn and no GERD symptoms at all.

I had printed out an article last year on LARYNGOPHARYNGEAL REFLUX (did a search using this name) and have printed it out to take to the drs office with me when I make an appt with an ENT.

This article stated that there is a postive risk of squamous cell carcinoma of the larnyx also so something people need to know.


Thank you for all of your info. I wish there was a support group online for LPR.

Paula in OHIO
 
Hi!
Sorry about the late response..
Lately I've been taking lyrica (no side effects except one that is actually kind of beneficial and doesn't deserve to be mentioned). I can't say with complete certainty, but taking lyrica seems to coincide with me feeling much better. Today was my best day since about October 5th, when this whole nightmare started.
But still there remains a slight twinge at the left side of my throat that comes and goes, and makes me think that perhaps, if a doctor was guided to look at that exact spot, or if an MRI was taken, they would detect "something."
Like you said (I'll paraphrase it), and I think every "LPR" patient has to have this as their mantra:

A little problem in the throat/mouth area amounts to a big problem in how you sense it.

Sadly, people use that as a justification to believe they have a reflux issue, when in many (most, I believe. I'm not a doctor though) cases, reflux has zero to do with our throat issues.

I think it was, and will one day be proven to be, a horrifying mistake that many of the people on this board are working to try to treat reflux. Even if reflux treatments work for some of them, that's more or less coincidental. Supposedly, it was found in the medical journal article "Back to the diagnosis of silent GERD" that ppis have an anti-inflammatory effect (like advil, I guess). That accounts for a few of the apparent ways it can help LPR patients.

But if that is the case, wouldn't it be better if LPR patients just took tylenol and did a service to their hearts at the same time, rather than permanently messing up their own digestive tracts?

I think your post is really so encouraging, as were those of Aswander because you are living proof that these symptoms in the throat were actually not related IN ANY WAY to reflux, despite the fact that you both suffered the same exact symptoms that people suffer who believe they have a type of reflux.

You guys are living proof that LPR is not the only thing that causes this laterality of symptoms. I believe and hope that when the actual problem is removed from your throat in a few days, you will recover. And when you do, don't forget to post for all of us! We all need to hear it.
 
I vent to another doctor this morning , this time maxillofacial surgeon ,very experienced ... a family friend he cjecked my throat again said that it can wait January no need to do operation now ,but he also said few things ...
smoking can , alcoholic drinks and soda based drinks can really caouse serious problems to some people ..especially on vocal chorRAB ,throat he also said that i shouldn't smoke ever again cause my throat tissue is very sensitive and hot air from smoking cigarettes can provoke some type of cancer there ...

then i ve asked him about swallowing problem and sore throat and some other things and he said if your thyroid is ok ( she can cause very similar problems) u should check with phoniatrist ... sometimes just the way we are chewing food or talking can cause some real problems but at the end he said that all that symptoms can be ( in my case especially) from my head ... he asked me do i feel anxious ,under stress ... and i have to say .. I do ... I feel stressed , depresses and all those problems are worst since all this started but i have to admit they were here before it all started ...
I am afraid to use Lyrica because of this "LYRICA may cause suicidal thoughts or actions in a very small nuraber of people, about 1 in 500" it is from their official web site ...I cant risk ....so I am thinking about going to some psychotherapeutic sessions ... btw my mother died of lung cancer 8 (i was 19)years ago and i have to say every time i feel ill the first thing on my mind is cancer ...
I wish i could wake up one day and all those symptoms are gone ....
also i think there is at least 20% of our obsession ... I already said I DO NOT feel all those thing while I am asleep ...What about you?...
 
neptunian,

i checked and on another site you posted that you actually got a response from some guy from the peptigon offices (I'd love to see that office).

Their evasive response should be enough to make it obvious that the product is a complete fraud, and was in fact, a cynical money grab.

It is the kind of scam that someone should almost lose their license for, in my opinion, if it can be demonstrated by other doctors that there is no medical ingredient in the product. How is that different from a tonic or snake oil salesman travelling with a county fair, a century ago?

It's amazing that such villainy still goes on in the 21st century. I'll tell you what, if peptigon comes out again, I'll release my own "LPR pillow" which cures LPR by causing the neck to support the function of the UES, and keeps the pepsin where it belongs.... in the esophagus.

On a serious note, if proton pump inhibitors aren't working, give them a few more months and then try lyrica or elavil, or xanax, or advil... The pain killer type drugs deserve at least a quarter of the time ppis got.

Keep in mind, Sheepdog tried out my suggestion of trying lyrica and it worked. She posted about it. I kind of wish a few more people would try lyrica and post their results, for the benefit of science and the treatment of LPR. Regardless of why it works (or what the reason for symptoms truly is), if it works for you, then it would take a lot of your stress about this away.

Waiting for peptigon won't do any good. That email you got doesn't even set a loose time frame, and they never mention the studies of other doctors. The whole thing reeks of a scam. Which is what it is.
 
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?

ThousanRAB.

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 boarRAB 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 McdonalRAB 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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