drtinsac journal - GERD/LPR - extremely long

I have noticed that other people have made messages to act as logs for their journey with this reflux condition. So I am going to do that here. It will serve as a place for me to keep track of symptoms, treatments, and since it will show up in search results, I hope it may help someone who had some of the same symptoms I had before I knew they were from reflux. This post will probably be incredibly long, but I have spent so much time and energy on this condition, I have a lot to say about it and I may as well put it down! I'll be posting in my test result data when possible, which may help others if they want to compare/contrast to their own results.

First a quick cliffs note version of my symptoms to see if they are similar to yours and if you want to even consider reading some or all of this.

*NO Heartburn*
OFF PPI: tight throat especially after meals, swallowing lots (I mean a LOT), throat clearing.
ON PPI: throat not as tight, not swallowing as much, more voice issues, bitter taste, burning tongue.

Here goes.

I'm now 34, male, 5'10" and 155 lbs. I work out several days a week and walk my dogs about 45 minutes a day. I eat, and have always eaten, very healthy foods. Lots of chicken breast, brown rice, millet, lentils. These things add to the frustration of this condition since I "should" be healthy. I work for a large university as a public health research analyst, so I am fortunate to have access to nearly all medical journals which has been critical in my progress in figuring this thing out.

Starting around age 31 or so, I noticed that my throat felt very tight, and as a result, I always felt the need to swallow. The problem was that when I swallowed, I only felt any relief for about a second, then returned the tight feeling and again needing to swallow. It was worse after meals, but I made no connection of that with anything. I lived with this condition for at least 2 years, not noticing much that would help it, and having no idea what it was. Actually, I thought, since when we are nervous we swallow (you know that "gulp" for comedic effect when a person suddenly gets nervous), I thought that maybe it was all in my head. But to me it didn't make sense that it was anxiety since I didn't feel anxious or depressed, and it happened whether I was relaxing at home or in a more "stressful" situation which we all deal with. In short, it was a very confusing condition for me. The only other main symptoms I had at the time were clearing my throat quite a lot, and I felt congested a lot of time.

I started trying various relaxation techniques, meditation etc, and tried to "accept" it. At one point, I even tried something called paradoxical intention which was thought to be of help to people who stuttered. If the person TRIED to stutter, somehow it helped the brain and the person was actually unable to stutter.

Since all this swallowing was getting to my head, I decided to deliberately swallow as much as possible, in front of everyone and everything. I thought this way, I would help my mind to "accept" swallowing and the problem would just go away. Even though it was embarrassing to be swallowing that much, by doing it deliberately, though it didn't help me swallow any less, it DID work somewhat in that I at least wasn't beating myself up for it. Still, it was taking lots of energy and I went back to try to find other ways to accept it. But the bottom line was, it didn't help.

At this point, I was googling for things like "tight throat" "excessive swallowing". I tended to land on pages about anxiety and "globus" (or "globus hystericus). Usually these pages referred to the sensation as a "lump in the throat" and often people had trouble swallowing. This didn't match with what I was dealing with, I could swallow all I wanted. And I didn't feel anxious either, at least, I didn't connect any anxiety-provoking situations with my need to swallow.

So I ended up on a page describing post nasal drip, and that PND could lead people to the feeling of needing to swallow. Since I felt congested a lot of the time (though I didn't feel the PND in my throat), I FINALLY thought I had found a diagnosis that made sense, and I went to the doctor.

That's something else about me that probably others share. Unless I think I know what the problem is, and that a doctor could help with it, I do not go to the doctor. Now I WISH I had gone as soon as I noticed a problem, but this pattern of symptoms I was having made no sense to me and since I didn't think a doctor could help, I didn't go.

But at this point in the story, I finally thought I had a diagnosis: post nasal drip. I went to my doctor's office the next day. I described my tight throat feeling, and told her that I could also generate "snot" any time I wanted to (I thought that was abnormal, but I was tying it to PND in my head). She said she thought it was reflux. I was very puzzled at the diagnosis. She asked me if I ever felt heartburn: no. She asked me if I ever felt food coming up: no. I asked her, is it normal for people to be able to bring up "snot" from their throat? She said she wasn't sure, but she thought I had reflux. She prescribed me Omeprazole 20mg (PPI), once a day. I still was not convinced it wasn't PND, but I went and got the prescription anyway. She also told me to quit coffee and alcohol. I only had 1 cup of coffee a day, and maybe a beer a night, so it was easy for me to give up cold turkey.

Within a couple of days of taking the omeprazole, my throat felt MUCH better (probably 80% if I had to put a number on it). I was FINALLY not feeling the urge to swallow constantly, and I was swallowing at what seemed like a normal rate! It was so wonderful to finally be rid of it. But I had noticed another symptom now. I had a bitter taste in my mouth after I ate and which persisted almost all of the day unless I was eating/drinking (which means swallowing).

At that point, I thought maybe the diet changes (only eliminating coffee and beer) would be enough, and I didn't like the sour taste, so I quit taking the PPI. Within a few days, the tightness came back and I was swallowing too much. But now that I knew it was reflux, I could try some other "remedies". I tried apple cider vinegar, and various chewable antacids. No help. So I went back on the PPI. I emailed my doctor that I was having the bitter taste, and she said I might need an endoscopy. I went back to see her again, she again said I should have an endoscopy, and she said she would try me on Ranitidine (h2ra) since it was a different class of acid blocker than the PPI. Tried it. Again it helped my throat, but that bitter taste persisted.

My PCP referred me to gastroenterology. He ordered a 24 hour PH monitoring study and manometry. He also asked me if I'd been sleeping OK, and for the past couple days I had stress at work and said I hadn't been sleeping that great. He seemed to latch onto this and he told me that "globus hystericus" can be caused by stress. At this point I had already gone down the stress road, and that wasn't it, and since the PPI helped me so much, I knew it was reflux. Anyways I had the manometry and PH test. I was told to be off PPIs for 7 days and off h2ra for (2 I think) days. Since I hated the tight throat feeling, when I stopped the PPI, I kept taking the h2ra until 2 days before the tests.

Manometry: This was very tough for me. My throat was again feeling tight (being off acid blockers for 2 days) and I again had a nearly constant feeling of needing to swallow. Though since I only had acid exposure for a few days, it wasn't nearly as bad as it was originally. They put a catheter down the throat via the nose, and they ask for swallows at very precise times (sometimes 30+ seconds apart). This made the test extremely bad for me. I inadvertently swallowed a few times during the test, after which the nurse told me how critical it was that I not swallow and that there were other patients coming in soon so we needed to finish the test. When she would have me swallow once then have me wait to swallow again, she would say things like "Don't swallow. It's very important that you don't swallow". All the while, my body is telling me I need to swallow and I'm trying to get my mind off it. I finally told the nurse that I am not making the CHOICE to swallow and that it would help me if she didn't continually mention swallowing. I told her to just tell me once when to swallow then keep quiet (I said it in a nicer way I'm sure). So she did, and I finally got through the test.

Manomety results: (pasted from my medical record):

Medical record said...

FINDINGS:
Review of the tracings reveal that the lower esophageal sphincter
is located between 47.8 cm and 51 cm. There is no evidence of a
hiatal hernia on the contour plot. The lower esophageal sphincter
resting pressure was 41.7 mmHg with normal being 10 to 45 mm
Hg.Relaxation of the sphincter is Normal.
In the esophageal body during the liquid swallows, 1 out of the
10 contractions was simultaneous, 9 out of the 10 contractions
were normal. This is consistent with normal peristalsis.
In the esophageal body during the cracker swallows, 10 out of the
10 contractions were normal. This is consistent with normal
peristalsis.
When measured between 3 and 7 cm above the LES, the mean wave
amplitude was 102.6 mm Hg with normal being 30 to 180 mm Hg. When
measured between 3 and 11 cm above the lower esophageal
sphincter, the mean onset of velocity was 5.3 cm per second, with
normal being less than 8 cm per second.
The upper esophageal sphincter had a mean basal pressure 148.3 mm
Hg with normal being 30 to 120 mm Hg. The sphincter relaxes with
wet swallows. Pharyngeal complexes had amplitudes up to 272 mm
Hg. The relaxation is coordinated with the pharyngeal
contractions.

24 hour PH: I took that day and the next day off work. The catheter in my throat was slightly annoying, and when I swallowed, I could feel my throat or Adams apple hitting against it, so I found that if I turned my head slightly when swallowing, I could get around it. There were maybe 5 buttons on the PH monitoring device. My main symptoms those days were sour taste and belching, so they assigned buttons to those symptoms. My sour taste symptom is with me all day except when I'm eating or drinking, and I told the nurse that I would press the button after first noticing the taste (following eating or drinking). Otherwise I would be pressing the button all day. It was not a particularly bad day symptom wise (as luck would have it), but I also wasn't doing my normal routine, I was sitting in my ez chair watching TV, took a nap, and so forth.

results, pasted from my medical record:

Medical record said...

POSTOPERATIVE DIAGNOSES:
DeMeester score is negative.
The acid exposure is normal during both upright and decubitus
position.
The symptom index association is positive as described below.
The symptom association probability is positive as described
below.
Evidence of esophageal hypersensitivity not present
FINDINGS:
Review of the tracings revealed the total length of the study was
23 hours 52 minutes.
The DeMeester composite score was 4.7, with normal being less
than 14.7.
In the channel located 5 cm above the lower esophageal sphincter,
the fraction of the time the pH was less than 4 during the
upright position was 1.3% . In the recumbent position the patient
had 0% acid exposure. During the total 24-hour study period the
total acid exposure was 0.9% with normal being less than 4%.
The reflux episode activity by impedance: Total Acid reflux 17
episodes (normal is less than 55); weakly acidic 11 episodes
(normal less than 26); and non acid reflux 0 episodes (normal
less than 1).
The patient reported the following symptoms: belching:
occurrences 104, acid related 42, weakly acidic 8; non acid
related 0, SIA 40.4% for acid, SIA 7.7% for weakly acidic, SIA 0%
for non acid, SAP 100% for acid, SAP 99.9% for weakly acidic, SAP
0% for non acid exposure., cough: occurrences 2, acid related 1,
weakly acidic 0, non acid related 0, SIA 50% for acid, SIA 0% for
weakly acidic, SIA 0% for non acid, SAP 88.5% for acid, SAP 0%
for weakly acidic, SAP 0% for non acid exposure. and sour bitter
taste in the mouth: occurrences 2, acid related 0, weakly acidic
2, non acid related 0, SIA 0% for acid, SIA 100% for weakly
acidic, SIA 0% for non acid, SAP 0% for acid, SAP 0% for weakly
acidic, SAP 0% for non acid exposure..
A positive symptom index (SIA) is defined as more than 50% and a
positive symptom association (SAP) is defined as more than 95%.
Impression: Evidence of acid reflux by symptom correlation.
Negative DeMeester score.
RECOMMENDATION:
Follow up with your GI specialist
Follow up by referring physician
Adhere to antireflux lifestyle measures
Maximize acid suppression therapy

Note.. this result says that I only had 2 occurrences of bitter taste, meaning it thinks I only pressed the button twice. I'm 100% certain that I had bitter taste after each of maybe 5 meals, which persisted throughout the day. That was normal for me. So I think I pressed it at least 5 times, plus once when I woke up in the night. Why it said 2 I have no idea, and unless someone knew that the taste persisted all day, they could easily look at that "2 occurrences" and wonder why I'm making a stink about it.

Next, I had my FU appt with the gastro doc. He said the tests were normal (he was wrong), and that since I had symptoms even with normal tests, he could prescribe an antidepressant. He said it was hypersensitivity (despite the 24 hour PH study saying "evidence of hypersensitivity" not present, which I hadn't noticed in my results at the time). I did not think I needed an antidepressant. And I felt that the bitter taste was REFLUX. There was nothing normal about tasting bitter reflux in the mouth. But according to his reading of the tests, I was normal, and since he had already thought I was a stress case, he said I was probably just overly sensitive to it. BS I thought, I did not believe it.

I asked him for an endoscopy, which he scheduled. He said at the time that he didn't think he'd find anything. (Which made me like him less than I already did, but oh well).

Endoscopy result:

Medical record said...

Findings and Interventions:
Esophageal mucosa normal
Esophageal-gastric junction localized at 44 cm.
Squamo-columnar junction irregular biopsies obtained
Hiatal hernia present, between 43 cm and 44 cm
Gastric mucosa normal
Duodenal mucosa normal
Retroflexed view hiatal hernia

biopsy result:
A. DUODENUM, (BIOPSY):
- NO SIGNIFICANT ABNORMALITY

B. STOMACH, (BIOPSY):
- CHRONIC GASTRITIS
- NO HELICOBACTER PYLORI-LIKE ORGANISMS

C. ESOPHAGUS, GASTROESOPHAGEAL JUNCTION, (BIOPSY):
- INFLAMED SQUAMOCOLUMNAR MUCOSA
- NO SPECIALIZED EPITHELIUM, DYSPLASIA OR MALIGNANCY

D. ESOPHAGUS, MID AND PROXIMAL, (BIOPSY):
- BENIGN SQUAMOUS MUCOSA WITH EOSINOPHILS (SEE COMMENT)

Comment: With regard to specimen D, the epithelium itself shows no features of
reflux esophagitis. However, there are scattered eosinophils which do not meet
criteria for eosinophilic esophagitis. The features may represent reflux
esophagitis; however, they are not diagnostic.

Another FU with the gastro doc. He said there was evidence of reflux. Again offered me an antidepressant (again, how is that going to keep bitter fluid from reaching my mouth?).

I was done with the guy. I went to my PCP and told her that since I had evidence of reflux and the PPI wasn't well enough working for me (I was getting reflux into my mouth causing the bitter taste), that I would like to talk to someone about surgery. My PCP is great, and referred me to the gastro surgeon.

Sidebar. I found a series of papers, which to this point are the most important papers I have found on my specific type of reflux. It's called "isolated upright reflux" which is defined as 0% of the time pH < 4 when supine. The papers I found, by the same few authors, said that these people have:
normal DeMeester scores (bingo), objective evidence of reflux such as mild esophagitis (bingo), often have small hiatal hernias (bingo), and largely suffered from atypical symptoms (i.e. NOT heartburn) (bingo), and PPI-responsive symptoms (BINGO again). The sweetest part: these patients, when given fundoplications, all experienced complete symptom resolution.

Here are links to these abstracts:
http://www.springerlink.com/content/p07203877l17l704/
great summary here:
http://www.ssat.com/cgi-bin/abstracts/11ddw/P44.cgi
whole paper again describing these patients
http://www.springerlink.com/content/h870r1m464651257/


I had my consult with the surgeon for 9am on a Friday. I was armed with these papers. I got there early, but told the dr was running late (at an "important function"). The nurse offered that a resident could see me. He came in around 9:45, looking like he hadn't slept in a few days, and said "It doesn't look like you need surgery". He said it in a way as if he believed I would be relieved like "Phew! Dodged a bullet!". Nope, I showed him the paper where the patients who had exactly my test results got benefit from surgery. I asked him if they ever did surgery for LPR, and he said "What's LPR?". I explained to him, and he said "It sounds like you know more about this than I do. I'll pass this on to the doctor". The nurse came back, and asked me if I still wanted to wait for the surgeon. Of course I did. I really think this doctor looked at my test results, wondered what I’m complaining about, and hoped I would just go away. Finally around 11:15, he came in with the resident. He said because of my mostly normal test results, he wanted me to see an ENT. He said sometimes he gets the ENTs patients when they should have gone to the ENT, and vise-versa. Though I didn't like him not thinking the data I had provided was compelling, I was glad to see the ENT because he is a top expert in LPR.

First visit to ENT. I took with me the printed/highlighted summary (the SSAT link) from above. He did a transnasal esophagoscopy (TNE), which is a tiny camera through the nose. He looked at my vocal chords and showed me something inflamed and said it was a specific indicator of reflux. He said I definitely had reflux. My main symptoms at this point were the continual bitter taste, and a burning sensation on my tongue (sometimes referred to as glossodynia or just intraoral burning). He said he saw what appeared to be a yeast infection on the back of my tongue (white stuff). He prescribed me Diflucan pills for 10 days, and maximized PPI therapy with 40mg 2x a day (30 min before meals). On this visit, i inquired about LINX surgery (magnetic augmentation of LES). He said that it could (or would) erode into the esophagus and kill me. Interesting reaction. I showed him the printout of the SSAT abstract from above, and he said "This is you". A good sign I thought, but let's try the meds.

These medications had no noticeable effect for me beyond the effect I had from a single PPI. The Diflucan may have helped with a yeast infection (if in fact I had one), but did nothing for my tongue or the bitter taste.

Second visit to ENT. I saw the partner of the LPR specialist. By this point I had been on 80mg/day PPI for 2 months, and for at least 6 months before that, 40mg/day which I took following the endoscopy. My vocal chords were still inflamed. The doctor told me we were nearing the "end game" of things to try. By that point I had read about hypersensitivity (I still hadn't seen that my 24 hour PH said no evidence of hypersensitivity), and I wanted to try Elavil -- that antidepressant the GI doc wanted to give me. I also read that it could help with burning tongue. Great!

The elavil had no effect, other than making me drowsy for about a week until I got used to it. So the medication was definitely in me. But I read that for burning tongue or hypersensitivity, it should help very quickly, within a day or two. Stayed on it for a month, did nothing.

Third and most recent visit to ENT. He showed me a paper describing an old man who had burned his tongue on soup and had a bitter taste and burned tongue feeling. He was prescribed Zyprexa (an anti-psychotic) and with a few days, his symptoms were nearly gone. But though my own research, and having lived with the sour taste -- I knew that it wasn't in my head, it was in fact reflux. The old man had no reflux and had taste problems. I had no taste problems, I could taste everything fine, only after I ate, about a minute or two later, would the reflux show up in my throat and then in my mouth. So I told him I didn't want that pill. Instead he offered me Baclofen. This drug decreases transient LES relaxations and can help with reflux. It was a fairly rushed visit and at this point I wanted to continue "checking things off the list" in terms of medications even though I was fairly sure baclofen wouldn't work (see below). By the way, there is plenty of data showing that burning tongue (glossodynia or intraoral burning) is associated to GERD/reflux, if you need any references let me know and I'll be happy to share them.

I again asked him about LINX and he said "The problem with LINX is, it erodes into your esophagus and you die. Not worth it for a little bitter taste". Sigh.

That was my last visit, about 3 weeks ago. I am now on the baclofen and other than the drowsy/drunk feeling side effect, is it not helping at all. Why? Because, according to those papers that describe my reflux condition, upright only refluxers have something about the LES that decreases it's ability to stay properly closed in the upright condition which lets an aerosolized reflux up which evades detection by normal ph monitoring (which I had). So decreasing transient LES relaxations with baclofen would probably not help me at all since the LES is not relaxing, it's being pried open by some characteristic of the anatomy and allowing aerosolized reflux.

Today.

I am back down to 20mg PPI once a day. As I said, I had not noticed much of any improvement from this compared to 40mg twice a day. So in effort to be putting fewer drugs into my system, I'm back to the original dose which helped.

My theory is a simple one but one I think is right. When I was off PPI, the refluxate was acidic and this really irritated my throat. As a result, I swallowed a lot. This, I think, kept pushing down reflux so I never had any acidic or sour taste in my mouth. My manometry showed a hypertensive UES which explained the tight throat feeling. When I am on a PPI (or even the H2RA), the refluxate still makes it to my throat, but it's less irritating so I am not compelled to swallow as much, therefore, the reflux makes it up even higher, namely to my mouth, and thus the bitter taste and irritation to my tongue. Also since I am not swallowing as much, the refluxate is free to sit there in my throat and irritate my vocal chords which has caused me voice issues where when I was swallowing more, I didn't really have.

When I am eating or drinking, there is no bitter taste. All feels normal. Once I stop, about a minute or 2 goes by, and there is the bitter taste. If I force myself to swallow (dry swallow) every 10-20 seconds, the bitter taste isn't there. I communicated this to the ENT (who I am seeing again a few weeks) in order to try to convince him that this bitter stuff is indeed reflux and not a figment of my mind that will be helped by an antipsychotic drug.

And just to state it for the record: this reflux is affecting my quality of life. I am a fairly durable guy, I can tolerate pain just fine, but constant symptoms is not the way I want to go through life. When my ENT said he wouldn't risk surgery "for a little bitter taste", it was insulting. I wish I could let him experience what I'm experiencing on a daily basis and see how long he could hack it. Especially if he had published evidence that the symptoms could be resolved with surgery.

Additionally, I am very interested in the LINX system. Problem is not a lot of doctors are doing it, and there is no way in heck this ENT would support it, after all he told me twice that it would kill me. Anyways if you want to read more about the LINX aspect, I would recommend reading the LINX club series of threads.

At this point I am considering switching from an HMO to PPO (open enrollment is right around the corner) so that I can go see any specialist I want. I am in Sacramento but I am prepared to visit LA to see the LINX surgeons there. I'll surely be armed with those papers by Hoppo et. all, they are my main ammunition in my fight to try to get some resolution to this reflux thing, since they prove that patients with my test results have full resolution of symptoms after surgery. I would pay anything to be free of symptoms. I hope I am getting closer.

Ok, this is the longest post I've ever written. And maybe no one will read the entire thing unless their symptom profile fits mine, who knows. But I'll come back to this thread with the next episode of my treatment.

Take care everyone.

Post Edited (drtinsac) : 11/14/2012 4:49:43 PM (GMT-7)

Hi Rockhopper. I have located a couple places near me. One of them is an ENT who gets horrible reviews, like she comes in hours late for appointments, is rude, tells obnoxious inappropriate jokes etc.

The other one is further away but didn't have any reviews like that.

What I'm not sure of now, is whether I should change my insurance to PPO (to have the flexibility to be able to go to LA to see a LINX surgeon), or if I should stick with my HMO and ask for a second opinion, where theoretically I could get this Restech test done for free. Money is not my main concern though, so I'm leaning towards the PPO.

Then part of me is thinking I should try to convince my ENT that I should get a surgery, based on the papers that I linked above. And just get a fundo, since that's what was used to alleviate symptoms in that group of patients. I mainly don't like the recovery process issues with Fundo, and not being able to lift anything for many weeks. With the LINX I haven't seen much beyond Justpassingthrough where there are results available for LPR/airway reflux.

The way I read my (potential) PPO plan, there is no referral needed, just go to whichever provider you want. The HMO plan I'm on now requires PCP referral.

drtinsac
What did the docs say about your hiatal hernia? Also you had a not particularly bad symptom day when you had the 24hr. pH tube in. We asked the tech person if the tube (it went through the les) helped abate the reflux symptoms as this occurred in our case with two 24hr pH tests and this became a much discussed topic (family). Symptom free both times. We were told yes. She said she heard it from other patients too. The doc said no. I wonder if the tube somehow held the hernia down causing the crus diaphragm to be tighter preventing some reflux. Also the tube in the LES might lower amount of reflux coming up through the LES. Reading your history brought this back to us . So for what's its worth, just thought mentioning this.
Also you mention about the saliva. The doctor was familiar and called it water brashing. Many times appears white foamy. Was told that the body is doing this to neutralize the acid.

Hi Pat, thanks for commenting. Yes I had wondered about that myself, whether that equipment changed how my system was working.

I had mostly put it down to the different type of day (different activities), but the gear may have been part of it.

Also with how my symptoms respond to being on/off PPIs, since I was off them, my throat was tighter and I was swallowing more than normal. This goes with my theory of "washing down" the reflux through increased swallowing. The sour taste I had that day was perceptable, but not as bad as when I am on PPIs and my throat is less affected by the reflux.

My ENT didn't think surgery of any kind was a good idea since I had tongue burning. But I've found many papers describing tongue burning as a symptom in GERD patients. Anyways I am hoping he looks at the evidence I bring him and agrees that surgery could help.

Such a weird condition.

My next appointment with ENT is not until late November. So I emailed him telling him that the Baclofen wasn't working and that I wanted to try Zyprexa, which he offered me on my previous visit. As I mentioned above, there is a case study of an old man with a bitter taste and burning tongue who experienced relief within 3 days on Zyprexa (an anti psychotic..). (Of course, the old man did NOT have any signs or history of reflux, which I do have)..

I took my first Zyprexa today, 5mg is what was used in the case study and that's what I was prescribed.

At this point, I am willing to try anything to continue to check possibilities off the list, and the fact that it should be evident within a few days whether it's working or not, made me want to try it even more.

I continue to do research into burning mouth/tongue and GERD. I have PLENTY of papers that demonstrate GERD patients who have burning mouth/tongue and how they have these conditions more than normal controls. Unfortunately, the only time I can get even close to my ENTs ear is when I am in an appointment with him. Any other correspondence is usually filtered by his nurse and I get either 0 response or something perfectly useless, e.g. "Dr says Baclofen decreases TLESRs" (which we had already been over and did not address my message).

I've also found lots of research on the proximal extent of reflux, which tends to be around 20% in healthy subjects. GERD and LPR patients have higher percentage of proximal refluxes. Mine were around 60%, beyond the 95 percentile of normal, and consistent with the symptoms I've been experiencing.

I have thought carefully on what I am going to do during my next appointment. The appointment will be critical because open enrollment (where I can change to a PPO and see my choice of specialists) ends the following day. So if I am not guaranteed a surgery, which I believe I have good evidence for, I'm going to switch to a PPO and go from there.

Since I don't think I'm going to convince him of anything, I'm fairly sure I'm going to a PPO and as of January 1st I'll be able to have more choices. Like someone who can do a restech test, hopefully find some aerosolized reflux missed by regular PH monitoring, and recommend surgery. It will cost me significantly more than my HMO, but what good is saving $$ when ongoing daily symptoms continually take away from life.

Erica, you are right, it is frustrating when things are "atypical" and a person only has a few minutes every so many months to see an "expert". I'm finding the "experts" I am seeing aren't as informed as I'd hoped they would be and don't seem to be very open to data/research that doesn't fit their beliefs. I'm hoping with a PPO, I'll be able to go anywhere and see the very people who publish the papers that support my position.

In the meantime, I'll keep popping pills, at least long enough to know whether they'll work or not. I'll update in a few days one way or another as to whether this Zyprexa is working. If it's not having any effect in a week (the old man in the case study had relief in 3 days), I'm quitting that too.

Yes, PPI drugs can cause b12 and calcium deficiencies. Sometimes Magnesium as well. I take all three as suppliments and I have been on PPI drugs for several years. My levels are all normal. Have you looked in to alternative medicine? I have found that a few natural remedies supplimented with a gluten free, low acid, low fat diet has helped. You also could check out alternative medicaine doctors as sometimes they have a different perspective on things.

Hi Dr Tin, what an excellent post. Saved for reference. Agreed with Erica, if you don't fit the traditional clinical picture, it can easily sway assumptions towards psychopathology.

I too am fortunate enough to have access to Medline, Embase, etc and the more I read on the esophagus/stomach/bowel the more I realise just how mysterious some of its refined mechanisms remain, eg the whole range of possible influences on the LES, esophageal and gastric contraction, and that pathology in one of the refined mechanisms can stump the physician/surgeon. Unfortunately, we just don't know enough.

Dr Tin, if I were you I would prioritise ALL my efforts towards some surgical option, including fundoplication, given the relatively high success rates in both 'traditional' gerd but even for those with atypical etiolgies (eg gastroparesis).

I would (if I were you) STOP taking the Olanzapine IMMEDIATELY. Your presentation is perhaps relatively rare, but highly plausible. The potential side-effects (EPSEs, rare but dangerous QTc prolongation, the whole gamut of metabolic syndrome etc) are too serious a risk just to appease your physician. You don't convey as neurotic in the slightest.

Keep us updated, your experience is a fascinating read.

Couple updates.

I am going to make an appt. with the nurse practitioner who analyzed my 24 hr PH study. I have the detailed tracings which I received through a medical records request, and intend to find out why the study shows only 2 episodes of sour taste when I know I pressed the button around 5 times.

I have noticed about my symptoms that the less sour taste I have, the more throat soreness/tightness I have. When the throat is less tight/sore, there is more sour taste. Off of PPIs, I have a very tight throat, and swallow a lot, but have no sour taste. Possibly my UES is closing or otherwise restricting reflux, then I feel the tightness. Note on my manometry I have a hypertensive UES pressure, outside of the normal range. In papers this has been shown to be associated with reflux.

Ok, I have an update to the summary analysis of my 24 hour PH study.

As to WHY this was revised. I noted in my earlier message that I had more than 2 occurrences of bitter/sour taste, and I was wondering why the report wasn't indicating it. Then, I requested the raw tracing data, and received a printout with largely illegible tracing graphs but with every symptom I pressed a button for, throughout the 24 hour period. I noticed there that some times when I KNEW I pressed the button for sour taste (which was the medication button), it was marked in the test data as medication and not sour taste.

Anyways, I called more than once to try to reach the NP who analyzed my study, and I was finally told I would need to schedule a clinic appointment to see him. So I jumped through the hoops, got a new referral from my PCP, and arranged for that. I got a call today from the NP, who said that he re-analyzed my data even with the guidance of the company who created the software for analysis. It DID change my results, though it didn't change my DeMeester score by much (4.7 to 5.2), it does now show a large number (almost twice normal) amount of weakly acidic reflux. It never showed that before. The NP also claimed that he corrected the error where the "med" button press was showing up as "Med" instead of sour/bitter taste as it should have been (note in the new results, it still says there were only 2 occurrences, but it now has higher SIA and SAP #s for sour bitter taste).

Also it says in the summary that this is "esophageal hypersensitivity" and recommends trying Elavil at bedtime (which I already tried, having no effect). I am still not satisfied with the quality of this analysis, after all, it says I am having symptoms despite having "physiologic" levels of acid exposure.

Two main problems there:
1) "Symptoms" is too generic a term. I can taste bitter sour acidic stuff in my throat and in my mouth. Anyone with a functioning sense of taste would be able to taste it. I do not have a hypersensitive sense of taste! And I find the nearly constant taste to be a burden on my quality of life. If my body was having some visceral reaction to reflux, such as a constant cough, that is what I would consider a symptom of hypersensitivity (assuming of course that whatever caused the cough was only experiencing normal levels of reflux). Again, there is nothing hypersensitive about my sense of taste. So there needs to be more attention paid to the particular symptom, and labeling anyone who can sense anything about reflux as "hypersensitive" is BS in my book.

2) Since I have nearly twice the amount of weakly acidic exposure as normal, I think that means it is not "physiologic" exposure, unless they are referring to fully acidic exposure. Weakly acidic reflux can still cause symptoms especially in the throat, which is where I'm experiencing them. This summary report mentions nothing about PROXIMAL exposure which for LPR patients is the MOST important thing. Most normals have about 20% of reflux episodes ever reaching the proximal esophagus, but I have 60%. To do the math: normal person has 20 episodes of weakly acid reflux. 20% of those reach the proximal esophagus, so they have 20*.2 = 4 proximal episodes of weakly acidic reflux. I have 46 episodes of weakly acidic reflux, and 60% reach the proximal esophagus. That is 46*.6= 28 proximal episodes of weakly acidic reflux. 28 is quite a bit more than 4. Since I only have throat and taste symptoms, I am hoping this FINALLY lets the doctors see the light.

Anyways, I have to call to schedule an appt. with the head Dr. of the motility lab, and not the NP who analyzed the study. Hopefully I can get the appt. this year, while I'm still in an HMO. I will show him my papers and data on fundoplication for my symptoms and see what he says.

Lastly - I would urge anyone who has even the SLIGHTEST concern about their test result, to file whatever paperwork they have to file in order to get the raw data (or as raw as they will give it to you). If I had only read the short summary (pasted below, and the old one pasted in my original message), I would never have known that I have many more proximal episodes of reflux, or that my SIA and SAP were incorrectly calculated. In short: GET YOUR DATA!! It is your right to get it! Do not risk the chance that someone goofed up and as a result you are not getting the proper treatment.

Now here is the new, yet still incorrect in some ways, summary analysis:

New summary said...

Review of the tracings revealed the total length of the study was
23 hours 52 minutes.

The DeMeester composite score was 5.2, with normal being less
than 14.7.

In the channel located 5 cm above the lower esophageal sphincter,
the fraction of the time the pH was less than 4 during the
upright position was 1.3% . In the recumbent position the patient
had 0% acid exposure. During the total 24-hour study period the
total acid exposure was 0.8% with normal being less than 4%.

The reflux episode activity by impedance: Total Acid reflux 21
episodes (normal is less than 55); weakly acidic 46 episodes
(normal less than 26); and non acid reflux 0 episodes (normal
less than 1).

The patient reported the following symptoms: belching:
occurrences 104, acid related 82, weakly acidic 9; non acid
related 8, SIA 78.8% for acid, SIA 8.7% for weakly acidic, SIA 0%
for non acid, SAP 0 for acid, SAP 90.5% for weakly acidic, SAP 0%
for non acid exposure., cough: occurrences 2, acid related 1,
weakly acidic 0, non acid related 0, SIA 50% for acid, SIA 0% for
weakly acidic, SIA 0% for non acid, SAP 0% for acid, SAP 0% for
weakly acidic, SAP 0% for non acid exposure. and sour bitter
taste in the mouth: occurrences 2, acid related 0, weakly acidic
2, non acid related 0, SIA 0% for acid, SIA 100% for weakly
acidic, SIA 0% for non acid, SAP 0% for acid, SAP 99.6% for
weakly acidic, SAP 0% for non acid exposure..

A positive symptom index (SIA) is defined as more than 50% and a
positive symptom association (SAP) is defined as more than 95%.

IMPRESSION: Negative DeMeester score (5.2) and positive symptom
correlation to physiologic acid exposure, suggesting esophageal
hypersensitivity.

RECOMMENDATION:
1. Low dose proton pump inhibitor therapy.
2. Adhere to antireflux lifestyle measures.
3. Consider trial of neuromodulation therapy (i.e., amitriptyline
25-50mg qHS).
4. Follow up with the referring provider.

One final note - when these tests list the "normal" range, they are usually referring to the 95th percentile of normals. So it is not "average" but "normal".

I think it could. For now though, I'm going to see whether they think fundo might work to decrease all forms of reflux. If I want Restech now, I'd have to pay for it out of pocket. The soonest I'd be able to get it through my health insurance is sometime next January. I'm thinking that having excessive episodes of proximal reflux might be enough to convince my docs that I need surgery, given that I've tried all the medical options unsuccessfully (and noting that my symptoms are partially PPI responsive).

If my current docs think surgery is an option, then I may be able to take my test results to a LINX doc and see if he thinks LINX would be an option. I might not need to have Restech.

drtinsac,

First off, thanks very much for posting your story and all of the helpful information that comes along with it. I am 27 yrs. old, in overall good health other than LPR, and experience VERY similar symptoms to those that you have been through. While we haven't had the exact same journey, it's been pretty parallel. Anyhow, as I agree that the best way to make progress without stubborn doctors, is to share our experiences of what does / doesn't work to help, and keep each other updated on progress made. I followed your lead and entered my story here: https://www.healingwell.com/community/default.aspx?f=45&m=2563030

I'm a rookie on the forum, so forgive if I'm not doing any of this correctly. I can't sympathize enough and certainly know how frustrating and helpless this problem can be, especially when I've essentially been told that no one can help. My main goal is to figure out how much damage I've done / been doing to my esophagus. All my tests have come back very normal (arguably even more normal than yours) and so I'm not sure what to do. I have a hard time convincing myself that surgery would be a great option right now given bad surgery experiences in the past for different problems (more muscular in nature), but either way, just want to understand all my options better.

If you come across any great docs on this in Atlanta or the South, please let me know. Also, if you decide to move forward with the Restech, let me know as I think this could be great data for people, like us, that sound like a lot of this stuff is coming up in the "aerosolized" format.

Anyhow, I look forward to hopefully keeping in touch. Please take a look at my story when you get a chance.

-MGDawg