isolated upright reflux -- low Demeester score with LPR symptoms?

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drtinsac
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Date Joined Apr 2012
Total Posts : 458
   Posted 5/23/2012 9:50 PM (GMT -6)   
I was reading an interesting article today. It described a group of patients who (with 24 hr PH testing) have 0% of time ph <4 (acid) in the supine position but when upright, have LPR symptoms. They referenced another article where such patients, who had a DeMeester score of about 5 (where anything under 14.7 is considered normal), had full symptom resolution after fundoplication.

I found this article interesting because I have what I think are similar symptoms. No heartburn, but sour taste, sour throat, globus. On 24 hr PH I had 0 time supline reflux. And a DeMeester score of 4.7. Positive symptom associations. The score itself does not look "that bad" but I know something is getting up there and irritating my throat. I have consultation with a surgeon in about a week to see if I can get a fundo.

I am curious if others here are considered "isolated upright refluxers" according to that definition (0% ph <4 when supine). And what their symptoms are, and any treatments that have worked or been suggested by doctors. As for me, I have tried ranitidine, and omeprazole, even 2x a day still results in some bitter material reaching my mouth all day long and causing my symptoms.

Here is the abstract to the article.
http://www.ncbi.nlm.nih.gov/pubmed/22395346

bcfromfl
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Date Joined Nov 2011
Total Posts : 417
   Posted 5/23/2012 11:01 PM (GMT -6)   
You may find some of the statistics on this webpage helpful:
 
 

soppendeuff
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Date Joined Jun 2008
Total Posts : 27
   Posted 5/27/2012 12:01 PM (GMT -6)   
"Isolated upright refluxers" has been my experience exactly. I had a Nissen in early December of 2011. It was working on resolving many of my LPR symptoms.

Lately, it seems like there's something wrong with my "wrap." I'm getting tested on Wednesday to check it. If there's something wrong, I'll endure a surgical fix. Even a relatively brief experience of some relief of my LPR symptoms and healing of my throat and lungs was wonderful and worth it.

All that being said, this a tough surgery and the changes to the digestive tract can be uncomfortable and permanently so. You should be sure that medication "fails" before considering a fundoplication.

joe1619
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Date Joined Dec 2009
Total Posts : 293
   Posted 5/27/2012 4:58 PM (GMT -6)   
i had fundo for lpr and relief for a year. now the wrap is loose and i am miserable. no one will help cuz the wrap is quoate intact..not working though

drtinsac
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Date Joined Apr 2012
Total Posts : 458
   Posted 6/1/2012 10:51 PM (GMT -6)   
I saw the surgeon today for a consultation.

First though, an intern (1st year student resident) came by, said that my tests were pretty normal so there'd be no need for surgery. I then gave him a copy of the paper referenced above, told him I think I had LPR and not GERD. And he said, "What is LPR?".

Finally the actual surgeon came in, after having looked at the paper. He says because of the test results, we do not want to jump into a fundo at this point. He ordered a barium swallow, AND most importantly I think, referred me to the head of the voice and swallowing center, who is VERY familiar with LPR.

He mentioned that TIF might be an option IF it was determined that surgery could help. He said they are not doing that surgery at this location yet, but might in about a year. He was not knowledgeable on LINX so I doubt that would be an option at this location in the near future.

I was a tad disappointed that he didn't think the paper I provided, which concluded people with similar symptoms and test results as mine (normal demeester) all benefit from fundoplication, was enough to suggest fundo would be worth doing.. but at the same time, reading what people are dealing with after fundo, in part I am glad we are not rushing into it.

I am going to try the Koufman diet strict at this point. I read her paper describing the 2 week strict diet results, and that stuff seems to make good sense.

joe1619
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Date Joined Dec 2009
Total Posts : 293
   Posted 6/2/2012 4:53 PM (GMT -6)   
it is all a guess to some of these guys. what's lpr..that is laughable..my gi asked same ? a couple yrs ago..they clearly are not up on the literature and the times..i am going to mayo..a gi dr. should know about lpr

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 6/4/2012 7:07 AM (GMT -6)   
Hi JPT - I have been reading your thread for a while now, glad you are doing well.

Yes I do plan to stick rigidly to the Koufman diet. 2 days in and no wavering so far, even with blueberries in my garden at peak ripeness. Maybe I'll freeze them for later..

The pepsin thing makes sense to me, but I always want to know WHY is pepsin built up in my throat in the first place, if I have "normal" levels of reflux? The answer might be in the theory proposed by the paper above, that it's some sort of squirting of material that only takes place while upright and evades typical PH testing. In that case a reflux surgery might be in order.

I am really looking forward to seeing the voice/throat doctor I have been referred to. He has many papers on reflux and had coauthored several papers with Dr. Koufman. I am confident he'll be able to explain what's going on.

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 7/14/2012 12:21 AM (GMT -6)   
As a followup.

Saw the ENT today, a very good experience. He did an endoscopy through my nose, and on the back of my tongue was lots of white gunk. He said a yeast infection (candida), and he put me on 21 days of diflucan. He said that infection may be what was causing my burning tongue, and I am hoping it affected the bitter taste too since that's my primary complaint.

On the endoscopy, he found something (forgot the term) on my vocal cord which he said was a specific indicator of LPR. So I finally have a diagnosis that makes sense!

He upped my dose to 40mg omeprazole 2x/day (from 20mg 2x/day) and I'll go back in 8 weeks for FU. If this doesnt help he said we can try baclofen, or an SSRI antidepressant (small dose) which could help. I did not ask, but since my main complaint is bitter taste, I don't see how a pain modulator is going to affect it. Chest pain, I could see, even cough, but bitter taste? Anyways that's 8 weeks off and I hope by then this yeast infection treatment will help with that.

I asked him about surgery, and he said he was not crazy about any of the surgical options. TIF was too new. Fundo created other problems. LINX he totally didn't like, and this surprised me, he said if the magnets get absorbed they could kill the patient. That really surprised me, since there are highly respected facilities now implanting LINX.

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 7/14/2012 8:04 AM (GMT -6)   
Hi JPT. I agree his take on the "LINX" was weird, but to add more detail. I was picking his brain and asked (in the fairly quick language used during visits) about the LINX surgery and I said "the magnets". He immediately reacted "No".. and mentioned something about them being absorbed or eating through the esophagus, it could kill me.

The reason I said "the magnets" was because the last Dr. I asked about LINX, who happened to be an expert surgeon and robotic surgeon, had not heard of it or at least didn't recognize "LINX". I then mentioned it was a magnetic band, and he then acted like he knew what it was (I still didn't think he was all too familiar with it). For instance he didn't know that it had been approved by the FDA in April 2012. So when I was asking the ENT about it, having had a good visit so far, I didn't want to seem like I was "testing" him by just saying "LINX", so I mentioned the magnets. Anyways, all this is to say, combined with what I think is his "weird" response that it could be deadly, he might not be familiar with LINX specifically. He might have been thinking of that Angelchik thing, who knows. But yes I did find it a strange reaction.

Otherwise I think the visit went well. The burning tongue seems to have come on only in the past few weeks during which time I was trying the Koufman diet and had abandoned yogurt. I also changed from a toothpaste containing triclosan (antibacterial) to regular. So there were definitely changes in things that could affect candida in my mouth. Another strange occurrence, was the 1st day after I ever took a PPI in my life (after having been prescribed one for tight throat), the next day I had a heavy white coating over the tongue. The coating eventually went away, but apparently is still at the back of my tongue. Don't know what this means.

The thing on my vocal cord was some sort of inflammation/enlargement, he didn't use the word nodule and it didn't look like a nodule.

But as far as his recommendations. He is really one of the foremost LPR experts, and he developed both the RSI (questionnaire) and RFS (scoring system for the appearance of throat structures) specifically for LPR. He also has written a paper on Fundo for LPR. So I am putting my trust in him, and will jump through whatever hoops he wants. I think it could end up in surgery if the sour taste symptom doesn't go away, but there is no way he'll recommend that unless I at least try this other stuff first. In the past I have really questioned my docs and their recommendations, which has delayed my getting to this point, which is probably as good as I've been in years. If I had done what they said from the beginning I'd probably be a few months ahead of where I am now. Of all docs I could put trust in, I think this particular guy is one of the best in the world.

Non
Regular Member


Date Joined Dec 2011
Total Posts : 42
   Posted 7/29/2012 6:39 AM (GMT -6)   
I had mostly upright reflux before surgery, but I did have a De Meester score of 52. I had 225 episodes of reflux and 218 of them were in upright position (ph-test 24 hours).
 
Be sure that it´s really reflux your dealing with. Surgery is a big step and if I where you I would ask for a multi channel test or a test to check vapors (from stomach). Not sure how many hospital that offers these kinds of test, but it´s worth asking for.
 
Maybe you suffer from candida? Or post nasal drip? Those two conditions can create problems that are very similiar to LPR.
 
I truly know what you are going through, this experience with LPR/GERD has been the worst of my life so far.
Hang in there!
/N
 
 
 

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 7/29/2012 7:19 AM (GMT -6)   
Hi Non - when I saw an ENT (about 3 weeks ago), he did an endoscopy through my nose and saw lots of yeast (candida) on the back of my tongue. He didn't mention the term during our visit, but on my online medical record I can see the diagnosis of "Candida Esophagitis".

I also think this may be to blame, at least to some extent, but I am certain (no placebo effect) that PPIs have made a huge difference (80%+) in helping my original complaint which was throat tightness/feeling the need to swallow.

But now my symptoms are burning tongue and bitter taste, the ENT said the tongue could be the yeast infection on my tongue. And I have read that candida can cause bitter taste. I still have some throat tightness but that could be the candida stressing out the area.

So far I am 2 weeks into taking diflucan and I think the bitter taste has decreased some but the tongue burning remains, and the white stuff I scrape off my tongue (a light coating, not as much as I saw on the video of the back of my tongue) keeps coming back. Still have the throat tightness.
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