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    Old 11-29-2010, 08:20 PM   #16
    marigoldgirl81
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    This is very interesting. I have been seeing a naturopath for 7 months now, off ppi's for 4 months. I have had "gerd/lpr" diagnosed with both by my gastroenterologist and throat dr in 2009...everyday for 1 1/2 years. Its nutty to comprehend. Everyday i wake up with a pink/red throat, my digestion is improving since going off ppis but still struggling big time. I was in the middle of a psychiatric drug withdrawl (slow and planned from a previous anxiety and depression) when one day it literally came on that quick on June 22, 2009. I was taking out recycling and felt something off and it has never, ever gone back. I also developed a bad cold/chest bug that same week, it was awful in my throat, i had never had a cough that bad in my life. I was diagnosed with mild esophagitis and gastritis a month later and ppi's worked for like 2 weeks, then i stopped them (retried many and stayed on them for a long time) and i've never been the same. The ppi's really helped mess my digestion up to the point of being 90 some lbs and my family (and i) thought i was dying...lost FORTY lbs....i had no digestion problems till i began the ppis. My ND has said although he sees some inflammation upon looking in my throat, its mainly neurological/nerves.

    I can't go in and get a scope constantly or do those awful tests b/c for one i am very sensitive to the meds they use to put you under and two i've been ON ALL THE MEDS...they didn't work...not even close. I don't want to live my life in constant fear that i am getting ready to die of esophageal cancer after 1 1/2 years of this every single day. They have tried ppi's and other stomach meds galore...but nada, nothing....things only got worse.

    I have always been sensitive. My ND brought it to my attention that although i am now dealing with digestion issues, it is most definitely made worse by the ppis due to my sensitivity and my throat/esophagus are extremely sensitive. I am currently working on lots of qi gong, lifestyle changes, meditation, etc....b/c psychiatric drugs was i thought my biggest nightmare until this came on. So, i won't be doing lyrica.....but i really find this intriguing and something i have pondered and always knew that there is some kind of fibromyalgia situation going on in my esophagus since that day. I do hope researchers find more and soon, soon, soon. There are alot of us, thank goodness for this board. I have never physically met someone with this strange situation i find myself in.

    Last edited by marigoldgirl81; 11-29-2010 at 08:23 PM.

     
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    Old 11-29-2010, 08:33 PM   #17
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    marigold, your story is identical to mine. you already had the guy tell you its nerves.

    Lyrica is pretty low side-effects. I know it freaks you out, (especially considering how your "LPR" started) but either try that, or just endure because better ones are going to come out in the next few years.

    Either way, you have to silence the nerves. I can tell that's what I'm facing too. You are pretty stoic to just put up with it. At least you aren't on those stupid ppis anymore.

     
    Old 11-30-2010, 04:47 AM   #18
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    SeekingSunrise: I understand that you are frustrated because you think you were misdiagnosed and mistreated. However, do keep in mind that just because some people have chronic throat problems which are neurological doesn't mean all chronic throat problems are neurological. (Also, not everyone with neurological pain is helped by Lyrica.)

    If someone has stomach pain/heartburn that tends to flare up at the same time as the throat problems, or has a bad taste in the back of the mouth, those would be strong signs that reflux really is involved.

    If someone has a sore throat in the absence of any digestive symptoms, then that's different.

     
    Old 11-30-2010, 05:52 AM   #19
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    I read about a guy who said remeron (a tetra cyclic anti-depressant) immediately stopped his LPR. He went off it and the LPR returned after a year.

    You guys have to consider other options.

    Another guy wrote "I just don't get why bonine helps my LPR immediately."

    If there were injuries in these cases, why do these drugs help so suddenly?

    Yes some of us possibly have acid, I admit it. But a whole ton of people on this page are getting no relief at all with ppis, suggesting that maybe reflux is merely an aggravating factor, if anything.

    We need to consider that there are more treatments available for this than ppis. What is the possible fear or risk? Try some of these things and see if they work for you, and if they do, post it, so we can start establishing new ideas for other patients to try, when the ppis don't work.

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    Old 11-30-2010, 08:51 AM   #20
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    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 builds 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

     
    Old 12-01-2010, 07:52 AM   #21
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    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.


    Last edited by Seeking Sunrise; 12-01-2010 at 07:55 AM.

     
    Old 12-01-2010, 05:40 PM   #22
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    I came to this thread just yesterday.
    I was diagnosed with Gerd about 5 years ago. And handed a rx for Nexium. I went off it because I didn't feel good on it. Can't remember now what it was. Maybe I didn't stay on it long enough.
    Previously to this diagnosis, however, I always have had copious amounts of mucous in the back of my throat for years. A globus feeling of a lump in my throat. (One doctor said I had globus hystericus - I thought that was hysterical if I hadn't felt so miserable.) A cough. But little else.
    Over last 5 years developed other various symptoms. (Went to doctors about Lyme since I had so many symptoms I couldn't keep up with) For the last few months have had increasing severity related to burning tongue, mouth, back of throat and in the last 2 weeks I can barely eat anything. This has been so long in the making I fear I have done more damage then I care to think about. Oh yes, about 2 months ago I took LOSEC but I felt very short of breath with it and "buzzed."

    I saw your mention of Dr. Jamie Kaufman she seems to make a compelling case for LPR and treating it differently then GERD. It's so new I'm sure it would be impossible for you to know yet whether it all works.

    So here I am, with all of you. If any of you have encouraging news on successful ways you have been coping or have been treating your LPR (GERD) I'd love to hear more.

     
    Old 12-01-2010, 07:50 PM   #23
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    I see the point you are making, but your scenario seems to be lacking something. If you have a doctor that jumps to such treatment immediately, I'd be finding another doctor. High-dose PPI's should never be the first approach to treatment.

    I do have LPR and GERD. I wouldn't be surprised if I had the nerve irritation at times as well. The thing is, I have worked with my PCP and 3 specialists over the years. (ENT, Pulmonologist and Gastroenterologist) In all cases, the doctors worked with me first on lifestyle changes. When the medications were introduced, they were introduced at the lowest levels first. I worked my way up to PPI's. I initially took low dosages. I continued to try various approaches before I started on PPI's twice per day. While trying the meds, I was encouraged to continue my lifestyle changes as well. The doctors didn't just prescribe the PPI's twice per day. I had multiple tests that were repeated over time to confirm reflux and see how the treatments were working. Granted, I did end up on high-dose PPI's and it is long-term, but it was with careful deliberation on my part and the part of multiple doctors. While I'm not comfortable with the long-term risks, the benefits far outweigh those risks in my case. (My reflux is literally life-threatening because the acid inflames my lungs at times and I can't breathe.)

    As for throat irritation, my ENT did a couple tests (not just a look at the throat). He gave me breathing exercises and holistic things to try. He did want me to try the low dose anti-depressants, but even at the lowest dose, they really knock me out. His goal is to help me "calm" my vocal cords down.

    I think it is a good thing you have done your research. More people really should. I think that is why many of us are on these boards. I do worry that you are advocating something that might only apply to some and not all. Some of us truly do have confirmed severe acid reflux. (My testing has confirmed I have acid in the gaseous form coming up into my throat during the majority of the day.) What you are sharing is certainly something we can bring to discuss with our doctors, but I caution people to look at all options in deciding upon their personal course of treatment.

    Last edited by MountainReader; 12-02-2010 at 05:43 PM.

     
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    Old 12-01-2010, 08:28 PM   #24
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    I have LPR as well.

    What about the hiccuping all the time? The severe acidic taste in the back of my throat? The build up of phlegm I get in my mouth and throat every day? Especially my voice, which has gotten VERY hoarse. The act of talking has become painful. While I don't get conventional heartburn, those symptoms sure do seem alot like an acid reflux problem. I don't have any cough though...

    Last edited by Xhale12; 12-01-2010 at 08:54 PM.

     
    Old 12-03-2010, 08:14 AM   #25
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    These are all good and balanced points you are making.

    However, I want to repeat that I think this applies to mainly to people whose suspected LPR began with a very sudden onset, usually after some kind of damage to the larynx (mainly viral).

    Because I think people who happen to have neuropathy rather than LPR will often be on these boards. The LPR treatments will not work for them, so they will go to these boards in frustration.

    But I will probably put some specific quotations from the articles I've read and downloaded in the coming days to help make a point about laryngeal sensory neuropathy.

    Another thing is the problem of ppis in double blind studies show that they do as much for laryngeal symptoms as placebos. In several recent studies, placebo taking patients had relief of their symptoms at a slightly higher rate than those taking ppis. In your case, Mountain Reader, and others who "taste" acid or have accompanying gastro-intestinal issues, you have good reason to believe LPR is a good part of your problem.

    But if you look at the symptoms of Laryngeal Sensory Neuropathy, or Post Viral Vagal Neuropathy, they are the exact same symptoms as LPR. So with LPR being very well-known, and LSN being barely known at all, all people who exhibit those symptoms are going to be treated for LPR. In my case, I tried various combinations of ppis and lifestyle changes, and what I've found is, drinking espresso, eating at mcdonalds, and drinking frequently has caused some improvement in my case. I can't really explain that, if my case is related to acid reflux.

    Also, this is a really important thing to think about: There are people on this board who say "after i got a cold, my lpr came back." or "my lpr goes for 2 or 3 months after i get a cold, and then disappears. Every time it's 2 or 3 months." How can that possibly be explained as acid reflux?

    Another thing that bothers me is the questionable research of Jamie Koufman who is the authority on LPR. I know a lot of you have actually met her in person to sort out your LPR. She used to say in the 80s it was just basically GERD, but then as studies started to show that normal healthy people could give the exact same readings as LPR symptom sufferers, she started to say things like "only 3 drops of pepsin a week could damage the larynx tissues." She even tried to release some product called "Peptigon" in 2008, which never materialized, but its garish website is still up. I encourage you all to take a look. The point is this: When it was called into question that acid could do this, she switched and said it was pepsin, because the evidence increasingly made it hard for other doctors to believe that acid could be causing the laryngeal symptoms. Then she had to say "3 drops" a week could cause lasting damage. She has also tried saying that somehow LPR patients have different weaker cells in their larynx that can't defend the tissue as readily. I just find that all hard to swallow, personally.

    If that was the case, wouldn't every annorexic in the world have LPR symptoms from their regular vomiting. Surely acid and pepsin gets prolonged exposure to their larynxes.

    Another thing is when people say that the globus feeling is your upper esophageal sphincter muscles squeezing together to keep the acid out, it sounds like some kind of goofy folk wisdom to me. Like medieval medicine is alive and well in the 21st century.

    Ok, I can't throw LPR out, because for one thing, I'm not a doctor. But what I'd suggest is that many of us on this board probably do not have reflux issues. If you have tried the LPR lifestyle changes and drugs, and have not seen improvement for months, and if your LPR had a mysteriously sudden onset for something that is supposed to be a chronic problem......then you might want to consider that you in fact have the little known laryngeal sensory neuropathy. If indeed you do, your chances of feeling well again taking neuropathic drugs are much much better than the 15-40 percent who experience relief after months of ppis.

    In any case, we all (whether we have LPR or LSN, or PVVN, or some yet undiscovered throat fibro-myalgia/evil spirit) are victims of a lack of understanding and a lack of effective treatments for our illness. I hope you all can agree with that. How many people on this message board have actually gone through with surgery to screw your stomach up so tight, you can't even burp, and you are still clearing your throat and coughing chronically? If that has happened, you just might want to consider that you have a nervous system problem. Anyway, I can't see how my advice would cause more harm than a life changing, painful, expensive surgery that never brought you any relief of your symptoms.

    So that's my two cents. I'm meeting the neurologist again on Monday. I sent him the articles I have mentioned, and he discussed it with the other neurologists. He also describes pregabalin as a "beautiful drug" because of its low side effects.

    P.S. Jamie Koufman's article "chronic cough" describes her using neuro drugs to treat laryngeal symptoms. It came out in 2010.

     
    Old 12-03-2010, 08:36 AM   #26
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    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.

     
    Old 12-07-2010, 05:02 PM   #27
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    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 hundreds 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 remember 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 combine 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....

    Last edited by Seeking Sunrise; 12-07-2010 at 05:07 PM.

     
    Old 12-07-2010, 05:22 PM   #28
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Oh, there's loads of evidence that PPIs don't help people who don't have heartburn, even when there's laboratory evidence that they have reflux. There are also studies that show the reverse.

    Matter of fact, I've found I reflux much less when I'm off the acid medicines. My actual stomach burns like hot coals, but there's a lot less acid in my mouth. And gabapentin can treat many things other than neuropathic pain. Maybe it's just simply relieving pain. Maybe it's actually helping the esophagus work properly. The side effects of gabapentin or pregbalin are no laughing matter, however. They include drowsiness, dizziness and sometimes severe weight gain.

    Still, it's worth a try.

     
    Old 12-09-2010, 04:53 PM   #29
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Quote:
    Originally Posted by Seeking Sunrise View Post
    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 hundreds 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 remember 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 combine 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....
    can you please give me the links of the studies/trials you mention

     
    Old 12-12-2010, 02:33 PM   #30
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    Re: LPR as something else, falsely being treated as acid reflux? Probably...

    Hi Seeking Sunrise,

    Your case sounds very similar to mine. Last February I suffered two severe colds 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.

     
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