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Old 11-25-2010, 06:12 PM   #1
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LPR as something else, falsely being treated as acid reflux? Probably...

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.

:

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Old 11-26-2010, 12:23 PM   #2
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

It may be that your throat problems aren't related to reflux.

Personally, when I have a sore throat that doesn't come from a cold or something, I also have a nasty taste in the back of my mouth, which makes me believe it is reflux.

However, PPI therapy often doesn't help, especially in folks without heartburn.

 
Old 11-26-2010, 12:30 PM   #3
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

It's very possible that some suspected LPR cases are a nerval thing, but most LPR sufferers also experience chest pains etc that can't be explained through such things.

There's a relatively simple way of telling, whether it's LPR or not: Pepsin immunoassay & ph/impedance probe or symptoms + hiatal hernia. If one of those is positive = LPR.

 
Old 11-26-2010, 03:07 PM   #4
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

indeed, philger. gerd symptoms and signs like chest pain aren't especially relevant to my idea.

What i'm saying is if, it started with a virus that damaged your throat, and then the throat alone produces acute symptoms, then we have to consider that it doesn't have to do with reflux.

Yet, since the generic, non-specific symptoms of Lpr are related to a number of other disorders (they are very similar to the onset of esophageal cancer) for instance, we will all be treated for GERD. Will someone with LSN obtain relief being treated for GERD? Never, that's why, I'm presupposing, a lot of us on this board have not obtained relief.

LSN is rare but it happens, and if LPR is also real, then it merely produces the same symptoms which are also produced by a variety of other problems. If we are all treated for GERD, only the lucky few who have this bizarre form of GERD will be healed. Because of the much higher rate of success for treating LSN in clinical studies in the last few years, I'd suggest that we would all be better off if every case of apparent LPR was treated with a trial to treat LSN.

I'm not an expert on LPR, but what I've read suggested that they can't even be sure if it can ever be positively diagnosed. Also, it's treatment is virtually worthless, if GERD doesn't accompany it.

Last edited by Seeking Sunrise; 11-30-2010 at 07:01 PM.

 
Old 11-28-2010, 07:41 PM   #5
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

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.

 
Old 11-28-2010, 08:33 PM   #6
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

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 number 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 thousands 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 number 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.

 
Old 11-28-2010, 08:54 PM   #7
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

LSN is diagnosed, according to David Sychamore's important article in october 2008 ENT Today:

Mainly by patient history. If the patient can remember the acute onset of the symptoms (chronic cough/globus/throat clearing/odynopagia), then chances are you are dealing with LSN.

There are also physical searches and something to do with electrical stimulation of the larynx. With that, they can sense numbness or paralysis of the different parts of the larynx, like the vocal folds.

 
Old 11-28-2010, 09:10 PM   #8
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

Hmm I definately need to read up on it more. I remember the exact date my story started: August 30th 2003.


I must disagree on the symptoms. The pain is by far not the worst part of it. Honestly I've grown fully used to the pain, don't even remember how life was without it. What really gets to me is the heart racing (vagus nerve irritation, actually that's how I can sense if I have a bad reflux episode. Once my heart starts racing I know my throat will hurt the days after) and worst of all: the lung issues. I'm out of breath easily now, and I can absolutely forget about doing any kind of sports except basic strength training because breathing in just burns like hell. This is coming from someone who used to run marathons

I want my life energy back.

So I will definately go for the nissen fundoplication as soon as I can. I know it's dangerous, but I'm willing to take the risk. I will likely fly to America for it next year, just got myself US health insurance.



Thank you very much for your kind words, please let us know if you find any more info on LSN. I wish you and everyone here all the best, may we all recover from this soon.

 
Old 11-29-2010, 04:58 AM   #9
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

Quote:
Originally Posted by PhilGER View Post
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.

 
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Old 11-29-2010, 05:10 AM   #10
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

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-acids 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 November 2010 and three days afterwards when I begain to drink thicker liquids 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

 
Old 11-29-2010, 05:12 AM   #11
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

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-acids 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 November 2010 and three days afterwards when I begain to drink thicker liquids 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

 
Old 11-29-2010, 02:11 PM   #12
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

What a load of rubbish . Just another drug company trying to push something new and expensive on those suffering.

You shouldn't reference papers that others then have to pay a huge amount to read to follow up on the research you have quoted. If you were genuine you would have included quotes from these papers rather than trying to con us.

Lyrica is made by Pfizer and I bet Sun Seeker works for them.

Evidence or STFU!

 
Old 11-29-2010, 03:42 PM   #13
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

I hope you are not referring to my post because I do not reference anything you allege.

 
Old 11-29-2010, 06:50 PM   #14
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

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.

 
Old 11-29-2010, 07:12 PM   #15
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Re: LPR as something else, falsely being treated as acid reflux? Probably...

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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