GERD/LPR - My Story - Seeking Advice! (Sorry for the long read)

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MGDawg
New Member


Date Joined Nov 2012
Total Posts : 14
   Posted 11/14/2012 5:53 PM (GMT -6)   
I am a 27 year old guy. As best I can remember, I did not have any problem with acid reflux/LPR/disphagyia/globus sensation, etc. until I first started interviewing for full-time jobs my Senior year in college, back in 2007. Back then, it wasn't a big deal for me. It would come and go, and several months after it had appeared, I was no longer bothered by it and stopped thinking about it for several years. Then, earlier this year, in April, it all came back. Symptoms vary as they do for most people, but at the top of the list are the globus sensation (feeling of something caught in throat), coated tongue (usually white, but often takes the color of whatever I've been eating or drinking), burning/sore throat and uncomfortable pressure / pain on my left side just below my ribcage (I suppose where my stomach meets my esophagus???). 

Over the past 7 months, I have worked my hardest to figure out how to best handle the problem, because as I've read from others, it's such a sensitive area of the body and the quicker you heal it the better. Well, unfortunately, it's 7 months later and while perhaps it has come and gone, it's no better than on day one. While I'm still not quite sure what the exact diagnosis is (I'm still trying to get certain tests done), my symptoms match up very well with LPR, and especially the aerosolized/gaseous acid coming up into the throat, as described by others. 

What I've Tried:
1. First off, I immediately and for the most part steadily, altered my diet. I have since gone gluten free, eat lean proteins, veggies, and drink lots of water. I would say that alcohol is the only obvious trigger that I still consume, and I try my best to do so in moderation.
2. I have tried several different PPIs (Dexilant, Prevacid, etc.). They always seem to help calm things down a bit for about a week or two, and then that effect goes away and they're next to useless.
3. I have tried different digestive enzymes and probiotics. Papaya enzymes didn't help. Lots of greek yogurt throughout the day didn't help. More recently I've started a stronger probiotic and it's only been a few days, but as far as I can tell, it's not helping anything. 
4. Sleeping with the bed inclined... basically all the "easily google-able" suggestions'

Tests I've Had Done:
1. After PPIs didn't work for several weeks, I had an endoscopy performed, which other than villous blunting in the small intestine (I was diagnosed celiac this year), was "perfectly normal" I was told. I have copies of most of my results if anyone would like to see and compare (I've gotten anal about all this and started collecting my own results since at this point, all the gastro guys say surgery's my only option).
2. I've had a manometry and pH impedance test done. Normal. Normal pressure during swallowing liquids and solids. Demeester score of 1, with more non-acid episodes and acid episodes, and more upright than supine. Supine was 1 episode and it was tiny. This sounds just like non-acid upright reflux, right???
3. I've had a thyroid ultrasound which came back normal... the doc thought it might be a physical obstruction at first. 
4. I had some kind of flexible scope laryngoscopy performed at an ENT's office recently as well. He said that while he could see the area was red and irritated, there were no visible folds, lesions or abnormalities, and so was hard to blame it on LPR from that test alone.
4. I've done several blood tests done on different occasions at the request of various doctors, and everything has come back normal. The exception here I would point out is Vitamin D deficiency (which I've since been working to address by taking 3,000 IUs daily) and my celiac diagnosis as earlier mentioned.

While there doesn't seem to be any perfectly accurate, yes or no, diagnostic test for LPR, I can't say for sure that it is what I have, but my symptoms match up perfectly. It seems to flare up after I eat almost regardless of what has been eaten. There are belches along with it, come chest tightness on occasion, the globus sensation, and the coated tongue. On the worst of occasions, I also get a shortness of breath that's perhaps my lungs getting irritated from all the acid (or Non-Acid???) material coming up. Some of the symptoms wax and wane, but I would say those that bother me the most and are there every single day are the feeling of something caught in my throat and the white coating towards the back of my tongue. It's gross stuff, but after months of dealing with it, I've gotten pretty comfortable talking about it.

Why I'm Writing:
Like most others in the forum, I started poring over the site back in April with high hopes of finding that quick fix that would get my life back to normal. As an otherwise relatively healthy (6'0", 155 lbs) younger guy, it often gets me down that I have to deal with this problem every single day of my life. There's no day I don't wake up, have a few burps, and start thinking about what kind of day my throat is going to let me have. I've gotten obsessed about what I eat, which at some point, becomes a contributor to the problem just  because it creates stress which knowingly makes the problem worse. So yes, it's become somewhat of a vicious cycle. After trying different pills and sleeping methods and eating different diets, and trying to ignore it with no lasting results, I realized that sadly this was likely going to be a longer fight than I thought. While I'm still hoping that it won't be lifelong, I"m trying to keep myself sane so admitting that it might be is probably the healthiest choice at this point.

I'm writing because I'm fed up with the complacency of multiple (can't even count how many I've seen in the past year) doctors who will recommend you try some canned test that diagnoses one problem and if you're normal, then suddenly, you don't have a problem anymore in their eyes. And if you do, well then it's "you should explore surgery". 

To sum up what is already a long note (thank you if you've read this long!), I'm writing to share my story. I'm writing so that I can talk with others who have a similar problem and we can share tips and tricks. I'm writing for advice from those that have conquered this problem. I'm writing so that I can start an LPR chain where questions can come in and get answered, and maybe a small group of us with similar symptoms can band together and keep each other updated to get through all this, as I know it can be kind of depressing at times. 

I look forward to any helpful words that anyone has.

Thanks,
MGDawg

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 11/14/2012 10:26 PM (GMT -6)   
Hi MGDawg. The coated tongue is interesting, when my ENT saw the white stuff on the back of my tongue, he diagnosed me with candidiasis of the esophagus. Prescribed me 21 days of diflucan.

He said it could have been the cause of my tongue symptom (burning sensation). It didn't help me, but he did another scope on his next visit and said it didn't look like a budding infection anymore.

Anyways, I was excited when he found it because I thought it could explain a lot. It didn't help me, but I did find that it was associated with globus, bitter taste, burning tongue. You may want to look into it.

And as far as doctors suggesting surgery, I'm having trouble understanding why they would suggest surgery for you. Usually the indications for surgery are something like: (at least partially) ppi responsive symptoms, abnormal exposure, positive relationship between symptoms and reflux. Is there something they are seeing that is not described in your post that would suggest you're having reflux?

For me, I have not found that I could ingest anything (besides a PPI) that would help with my symptoms. I've tried so many supplements it's not even funny. And thinking more about it, I wouldn't expect them to do much in my case because none of them (besides a PPI) actually change the reflux. It's not to say they can't help other people but I haven't found anything that helps.

There is a supplement called NAC which was just shown in an abstract to help people with LPR. I'm not aware of any other supplements shown to help with LPR, so NAC may be worth a shot. I've been taking it for a few weeks, no help for me, but it helped those people in this abstract. I dont know the dose they used, but you can take the recommended dose of NAC. I got mine from amazon.

http://oto.sagepub.com/content/147/2_suppl/P77.2.short

MGDawg
New Member


Date Joined Nov 2012
Total Posts : 14
   Posted 11/15/2012 1:52 PM (GMT -6)   
That's interesting on the candidasis; I've actually asked about it several times to different specialists given that's exactly what comes up when you search for my "mouth symptoms", but each one assured me that if it was a yeast-related infection or overgrowth, I would be out for the count. Symptoms would include fever, exhaustion, and much more severe stuff than globus and sore throat. I'm still keen to learn more about it though, since it's been the one constant, everyday symptom and it always is worst 10-15 minutes after I eat, especially after anything sugary or caffeinated.

I'm not really sure that any of them are strongly recommending surgery. I think after they've tried their one-trick pony (whether it's PPIs, or powerful antibiotics, etc.) and it hasn't materially improved things, I obviously always ask, OK, what's next? Because I don't want to live like this - it's a real quality of life issue. And they always say, "well, you can get evaluated for surgery... that would be the next logical step". So not a full recommendation, but washing their hands of it kind of thing.

I haven't written off reflux + other digestive issues just because of the diagnostic tests. I've seen a lot from some people who suffer from reflux symptoms, but who have gotten back similar test results - i.e. no definitive acid episodes, but plenty of non-acid, and primarily when upright. I think Jamie Koufman and a few others talk about this, and how non-acid stuff (pepsin, digestive enzymes, etc.) can be just as irritating/damaging as acidic contents coming up. I'd argue for those who really do have it, it might even be worse, as the options out there to fight it seem minimal today.

Long story short, I seem to get varied opinions on surgery. Some say it would definitely help me by tightening up the LES and preveniting anything, non-acid or acid, from coming up. And I've also read that it would be of no help from others as well. So, for now, I'm kind of at a loss.

Thanks for the supplement reference. I will definitely check it out.

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 11/15/2012 4:08 PM (GMT -6)   
So sorry to hear how you have been suffering. The tricky part of having GERD or LPR is that many of us do not fit into the mold of treatment. There are not a lot of options for treating these illnesses and the tests that they use often do not find answers to our questions. Doctors get frustrated when you do not respond fully to the treatment available and I feel like sometimes they do not take it seriously.  I have been fighting my issues seriously for several months. I have had GERD for years but it has gotten worse. I changed my diet, changed my medication and experimented with suppliments. I have been able to get my symptoms under control for the most part except I have back pressure and pain. I am still hunting for answers to this part. Some days I am better than other days. Keep searching and trying. We all hear and understand how you feel. It is exhausting trying to manage this condition and it has impacted my life greatly. I spend a lot of time organizing my meals and suppliments and making arrangements for myself if I am not in control of food preperation. I spend a lot of time on this forum and online searching for answers. I know I am doing the best I can right now. I am hopeful that eventually I will get it completely under control, although I have heard that this may not ever happen, that I may always have some good days and some bad days. I am trying to look at it in a more positive way.
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 11/28/2012 11:01 AM (GMT -6)   
Hi MGDawg,

Can you share your detailed pH report like number of reflux episodes etc.
To my knowledge, surgery is not indicated unless there is an abnormal DeMeester score + relief from PPI.

Manometry, I had 3 of them, the first was 10 mmHg, second 30+ and third was 10 mmHg. My takeaway? Test error is highly possible in manometry. But in your case it looks unlikely given your pH findings.

I also recall reading that in some patients supine LES pressure differs from upright LES pressure. So, you might want to see if you can get that pressure evaluated or take it on trust and then increasing LES pressure via surgery could be a viable option.

MGDawg
New Member


Date Joined Nov 2012
Total Posts : 14
   Posted 12/7/2012 4:23 PM (GMT -6)   
Sorry for the delay, Gerd_Hater, took me a while to find the paperwork... although it's pretty uneventful.

I had 27 upright non-acid episodes and 1 recumbent. I had 7 upright episodes and 1 recumbent. It looks like they don't give normal ranges for each category, but apparently <73 episodes is normal which I find hard to believe. Either way, the non-acid number is what worries me. I had a DeMeester of 1.0 (Normal < 14.7). I've also been told that the pH cutoff for the test I took is around 5 or 5.5, where anything under this value is picked up as an acidic episode. However, if you're dealing with LPR and airway reflux, anything between 5.5 and 7 could still easily irritate/damage the throat/larynx area. Anyways, I'm working to get scheduled for the ResTech even though the ENT who I most recently saw told me that it won't provide any better data.

Given my shortness of breath symptom and constant globus, I'm pretty freakin' worried about the long-term effects of all this, and am really bummed about the state of diagnostic testing and treatment options for LPR. It's as if all of this was just discovered. I've finally had a couple of guys admit as much, now that I've had the right information to share with them (show that I've done my research, etc.). Do surgeries help with airway reflux, or is there really no long term treatment currently?

Thanks to all.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 12/8/2012 2:15 PM (GMT -6)   
I'm not sure, but I had the TIF procedure done and that didn't do anything for me. It did however fix a monster hiatal hernia I had.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 12/8/2012 6:13 PM (GMT -6)   
MGDawg,

I am a little further down the line than you - its been 5+ years for me now with GERD + LPR. I am at a stage where I feel that I am running out of oxygen. I would say long term effects of untreated LPR are BAD.

Lung Tests are "low normal" or abnormal values but I know I am feeling suffocated.

There are no conclusive answers to

(1) whether LPR can be treated with surgery - Nissen is know to reduce Asthma symptoms and one of our members justpassingthrough (JPT) had success with LINX

(2) whether any damage done by years of LPR can be reversed - JPT has a theory of inhaling high pH water and he is going to let us know how it works.

GH

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 12/9/2012 3:01 AM (GMT -6)   
How would you go about trying to convince a doctor that a nissen would help your athma like condition? I'm at a complete loss with this as most doctors that I know are incompetent when it comes to lpr.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 322
   Posted 12/9/2012 5:41 AM (GMT -6)   
TheSixness,

Look at drtinsac's posts. He has done some research on asthma control from Nissen.

GH

MGDawg
New Member


Date Joined Nov 2012
Total Posts : 14
   Posted 12/10/2012 9:38 AM (GMT -6)   
Thanks for the feedback GH. I'm right there with you. I learn more and more every day about how the long-term effects are undoubtedly bad..... but, at this point I'm not sure what to do about it. The majority of opinions out there that I've seen suggest surgery won't help someone with they type / frequency of symptoms that I have... and PPIs do barely any good at all. The one Doc I have been to (ENT) that admitted LPR can do serious damage essentially told me: "Ya, you're right... it is bad, but it takes decades to do that kind of damage that is irreversible and can cause cancer"! So I guess he wants me to just sit back and suffer until I get to that point?!?! Sorry to be dramatic - just get really worn down from all this at times, as I'm sure you do too. I'm working to get signed up for the Restech as we speak and plan to do a Barium Swallow before the end of the year also (pretty much the only test in the "battery of LPR tests" that I haven't had completed yet)... I don't expect overly enlightening data necessarily, but just to confirm w/ 100% certainty that non-acid LPR / GERD are what's causing my symptoms would help me narrow in on the problem - though it sounds like this would be bad news either way... Sigh.

Sixness, did closing the hiatal hernia help a lot with your symptoms? How long had you had it? Thanks for the feedback.

Concerned1234
New Member


Date Joined Jan 2013
Total Posts : 2
   Posted 1/28/2013 8:48 PM (GMT -6)   
For all those people supposedly suffering from LPR, I wanted to throw out something for consideration.

A year ago, after a very difficult and painful surgery which taxed my immune system, I suddenly suffered from a chronically tight throat with a feeling of suffocation at nighttime. I kept clearing my throat, hacking, coughing; I could feel spasming in my throat, difficulty breathing, and there was a constant feeling of something being stuck in there. I went to a gastro doctor who scoped me, and he discovered an esophageal ulcer, a rash all over my esophagus and inner stomach, as well as a very enlarged larynx and swollen vocal cords. He promptly diagnosed it as LPR/ acid reflux/ GERD and gave me a PPI prescription.

I never had acid reflux in my life; in fact, I used to always joke that I had a "stomach of steel." It was a shock. Dutifully, I took my PPI meds, enduring terrible side effects with very little reduction of my tight throat/ suffocating feeling. Something didn't seem right, so I started questioning the diagnosis and doing my own investigation. I noticed that, curiously, my throat got worse after eating certain foods. So I was starting to wonder if it was a food allergy of some kind. Yet, the scoping doctor had taken samples of my stomach and esophagus and sent them to the lab for allergy testing and all the tests came back negative for allergies.

Still, the acid reflux/ LPR diagnosis seemed odd. And the symptoms wouldn't really get much better with the PPIs. I started doing elimination diets only to discover that I got severe stomach and abdominal pain, and an extremely tight throat, within a day after consuming CANOLA oil--a man-made, genetically modified, highly processed oil that is in virtually all processed food and restaurant fare in the USA.

So I eliminated all foods made with canola oil. Miraculously, my “LPR” cleared up within a week after this change in diet. I was literally symptom-free and could breathe normally and sleep again. I also learned that the reason this allergy doesn't show up in lab tests is because canola oil doesn't have any protein in it--which is what allergy tests are sensitive to.

I offer this information to all of you who have suffered from chronic LPR symptoms and throat tightness, without any recourse. Friends, this country’s food supply is killing us. (Even the vast majority of olive oil is adulterated with other oils--just Google “fake olive oil”). By being very careful about what we eat, I think we can heal ourselves better than any doctors or PPI meds can do.

Robbiegirl
New Member


Date Joined Jan 2013
Total Posts : 3
   Posted 1/28/2013 11:58 PM (GMT -6)   
I have had an endoscopy & CT scan if stomach. Since Obtober I have been on achiphex for 2.5 months. When I took the prescription aciphex & I did help. But when I tried the protonix with the this 901-572-2678
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