LPR for 7 months

Hi,

Just wondering if anyone else has similar symptoms to me, and if they have any insight on how to better manage these symptoms...

I've had LPR now for 7 months. Prior to this, I was quite healthy. Only some mild allergies, rhinitis, and asthma. But that's it. Absolutely no GI problems.

It started with intermittent heartburn for a few weeks. I also had an overwhelming feeling of nausea and fullness--even if I ate small meals. A few weeks later, the throat symptoms started--and the heartburn disappeared completely. Now only the throat symptoms have failed to go away, and they are extremely distressing. I have a constant irritated and burning throat and tongue. I can taste either a sour or bitter liquid at the back of my throat all the time. Many times in the day, I can actually feel the liquid refluxing into my mouth. Almost like it shoots or crawls up my throat into my mouth. As this happens, I feel a greater sense of burning in my throat. This burning is more pronounced after my meals, no matter what I eat. Nothing relieves the burning except when I'm eating. However, after I eat, within a few seconds, I can feel my throat burn, and it takes about 15 minutes for it to settle down. The only other time I get symptom relief is when I go to sleep. But I think it's because I'm unconscious. lol . The moment I wake up, I can feel the stomach juice crawling up my throat again, and into my mouth.

I have visited both an ENT and GI specialist at a large university teaching hospital. I had a gastroscopy done, which only received mild redness and inflammation in my esophagus. Nothing else. I had a mannometry study done, which was normal. I had a barium swallow study done which was normal. My ENT doctor looked at my vocal chords and said he didn't see much. Only a bit of redness besides the vocal chords--and so said he couldn't do much for me. My GI doctor also said he couldn't do anything--that's why I was referred to the ENT doctor.

I was put a trial of PPIs BID for 7 weeks. It did nothing to help my symptoms, so the doctors took me off it. I have tried all the lifestyle/diet changes you can think of. I follow the Jamie Koufman low acid, low fat diet. I avoid all usual GERD triggers (coffee, citrus, mint, chocolate, tomatoes, etc etc). I eat small frequent meals about 6-7 times a day, and do not eat 3 hours before bed. I sleep on a great incline. And exercise daily. I am a healthy weight. I took probiotics in the morning and manuka honey throughout the day--and really haven't noticed a difference. I'm really not stressed at this point in my life..the only stress I get is from these symptoms..which I have tried to minimize.

My symptoms are better than when they first started. But they are still quite bad. Bad enough, that they often get me down and a little depressed. I also notice they are wayy worse close to the time of my period. Literally my throat is on fire and burns for a week and a half before my period. And starts to settle down a week after my period.

Basically...I am out of options. The doctors dont want to prescribe meds for me, because based on their tests they don't see much abnormalities except a bit of redness and inflammation. I am definitely not a candidate for surgery according to them. However lifestyle/diet changes are really not helping. Just wondering...do you think I"ll just have to get used to this burning for the rest of my life? Or do you think in a few years it will settle down a bit. I'm 26 years old. I want to move to the West coast, and do a lot of great things with my life..but it's just hard to concentrate and be my old cheerful self, when I'm dealing with this chronic pain and discomfort day in and day out.

Thanks for the advice QiDoc.

Can I ask what your LPR symptoms are specifically? I tried prevacid BID, for awhile, but felt really fatigued and nauseous, so switched to pantaloc magnesium once a day. Both PPIs did not work for me, since I was still getting a really raw, irritated, sore throat 24/7.

That's great you are in the care of dr. koufman. I wish I could afford flying to NYC and getting all those tests done. Perhaps in the future I could save up to do this.

I also find that when I follow her low acid diet, I am having difficulty maintaining my body weight. I currently weigh 105 lbs, and am 5' 4''. I also exercise quite a bit..so maintaining weight is def a challenge.

I like your advice about gaviscon advance UK and alkaline water. Especially since its working for you. I was skeptical about whether these things really worked. Especially since this might meant paying more money for yet another desperate 'cure'. A case of evamor water (just 12 bottles) that dr. koufman recommended is sooo expensive, since it would have to be shipped through amazon. I currently just drink tap water (about 2 L/day) and take gaviscon extra strength at bedtime.

Oh, cool. I will look into getting some alkaline iceland water from wholefoods, and purchasing the gaviscon advance.

I really don't have any tips for maintaining weight, as I'm trying to figure this out myself..But since I eat 6 small meals everyday, approx 2-3 hours apart..I try to make sure I pack the most calories into each meal as I can. And basically I am eating small meals to make sure I don't distend my stomach, and put pressure on esophageal sphincter. Also...don't want to create so much acid.

Each meal, although small, is extremely important and jam-packed with stuff so I can try and maintain weight. For instance, if I eat a salad for lunch, I make sure its not void of calories with solely a handful of greens and dressing. Instead i'll top it with chicken, beans/legumes, squash, carrots, beets, etc. For breakfast, if I make oatmeal, I make sure I sprinkle on chia/flax seeds, and a small handful of nuts and dried fruits (mix it in with almond milk to make sure pH balanced). All of the meals are about equal size spread out throughout the day. And each mini-meal is very balanced and full of nutrients.

It's so weird why we are still having symptoms, even though our manometry tests reveal our sphincters are functioning 'normally'. I read somewhere that this test is just a 'snapshot' of our esophageal function. During that one moment in time when they are performing the test...yes, our esophageal sphincters are functioning normally..but the rest of the time..when we didn't do the test..perhaps our sphincters are relaxing abnormally, leading to reflux? I think this is the case for me at least...because during random periods of the day, my symptoms will be significantly worse...and it has nothing to do with food. It just feels like my sphincter has suddenly and randomly 'opened' up and let a flood of acid and chyme into my throat. Then an hour later it'll 'close' up and I'll feel a little better. Another thing is...perhaps it's just nerve damage?? Like we're having 'normal' amounts of reflux, but because our nerves and throat have been damaged by the initial hyperacid event..we are hypersensitive to stimuli, and normal amounts of reflux and acid are causing us distress...The same amount of acid being refluxed into a person with an intact, healthy throat will feel totally fine...

I've thought about this a lot clearly. More than is healthy lol.

Hi
Qidoc, what is the EMG test? What kind of doctor administered it? I am on 3 years with LPR symptoms. I am thinking it may be nerve related because all my tests are normal. Even my peptest. My symptoms are shortness of breath, strangling tight feeling in throat, chest pains, sore throat at times but not burning, occasional acid but not in my mouth, esophageal spasms, globus, trouble swallowing at times, pain in my esophagus, the breathing problems really get to me!

I am following a low acid diet for a while now. Not always 100%, but definitely nothing over the top. I I am very thin and try to exercise when I can breathe. Do you find the Gabapentin helps?

I've had LPR for 2-1/2 years. Mine started after taking Fosamax for a couple of months for osteoporosis (bad genes). I coughed 24-7, full of mucus and had a leukoplakia removed from my vocal chords. I'm still hoarse even now.

Right now, Naturopath has me on an AIP diet (vegan with meat! LOL) which helps some. Food allergies may be part of the problem. I take prescribed Chinese herbs, probiotics, drink bone broth, and have just started Kambucha tea. I take 80 mg of Omeprazole a day, have taken meditation classes, yoga classes and see massage therapist when I can afford it.

Have any of you had a 24 hour PH test? That was where they saw how badly my LES worked. It was shooting up my throat many times a day.

I have failed to get approved by my insurance company, including outside appeals, for LINX, and now am trying to find out more about the Hill Procedure which sounds like it has less side effects that a NISSEN fundoplication. Not sure if anyone has heard of it, or had the surgery. I'd be very interested if anyone has more info on it

I realize that the Kambucha tea is fairly acidic, but I only drink small amounts at a time, using it for the probiotic benefit. My stomach is unhappy most of the time from taking the max amount of Omeprazole, and the Kambucha is actually very soothing.

Here is a link for delayed gastric emptying also known as gastroparesis. You might take a look at it
http://www.healthhype.com/slow-stomach-causes-of-delayed-gastric-emptying.html