I don't understand why my symptoms have gotten worse? GERD possible complications with LPR?

I am sorry you are going through all of these frustrating and painful symptoms. LPR is complicated and presents a whole new set of issues on top of the typical GERD ones, and it seems not even doctors can come to a consensus on cause/effect where LPR is concerned.

I was diagnosed with GERD in early 2012 at 26 years old after a barium swallow showed reflux. My symptoms were regurgitation to my throat, very frequent burping, bloating, painful swallowing, and the feeling of a lump in my throat. I also felt like I was constantly having to swallow mucous (probably the body trying to heal the esophagus). An endoscopy two months after taking Prilosec and then Nexium showed I had Grade A esophagitis. GI also claimed there was a motility issue with my esophagus, secondary to the reflux (still seems odd he could identify this with just a scope). So I was switched to 60 mg of Dexilant. Finally, the esophagitis went away and the motility issue was also resolved, but it took a few months to fully heal. The throat symptoms persisted so my PPI doseage was increased to 120 mg of Dexilant per day.

Desperate to get rid of the symptoms that popping a few pills wouldn't fix, and refluxing even water, I tried everything that is commonly suggested for GERD:

- eliminated all of the typical trigger foods from my diet
- bought a full bed wedge so I could sleep on an incline
- lost 45 pounds
- kept a diary of my personal known food triggers
- took supplements such as DGL licorice, slippery elm, and marshmallow root

Months later, in desperation, I saw an ENT who did a 24 hour pH test that showed I had weakly acidic reflux (off PPIs for two weeks before the test). I had over 60 events of reflux reaching my throat during that period, and I was in the upright position for most of them. This made sense to me as I never had issues with waking up in the night from heartburn/chest pain. My ENT said the PPIs, even at high dosages, didn't work because my problem didn't strictly have to do with acid. According to him, my throat symptoms wouldn't resolve on the PPIs because they were caused by other stuff coming up with the acid, including pepsin and bile (bile is alkaline). As I am sure you know, PPIs don't stop the reflux, they just remove the acid from it. Finally I just gave up, continued taking the PPIs, and ate what I wanted, as it made no difference in terms of improvement of refractory symptoms.

Final test was manometry. This came back normal, which confirmed my GI's theory that the motility issue was secondary to the esophagitis, which by that time had long since healed. Given this final test result, combined with my refractory symptoms and pH study, my ENT referred me to a surgeon. He told me surgery was the only way I was realistically going to be able to eliminate all of my symptoms and eat normally again without reliance on PPIs.

Long term use of drugs scares me more than surgery, so I happily went to a consult. In April 2013, I underwent the TIF procedure, hopeful it would resolve all of my symptoms. I chose it because it seemed much less invasive than the nissen fundoplication. However, it did not turn out to be the success I had hoped for. In any case, a gallbladder attack that caused me to vomit completely destroyed it just months later.

In October 2013, I had LNF surgery and also had my gallbladder removed. At the time of the procedure, my surgeon found a small amount of bile in my stomach despite no food being in it (it's not really supposed to be there so that confirmed the bile reflux theory). The recovery wasn't fun, but the surgery ultimately was a success. After six months, I was completely symptom free, eating mostly whatever I wanted, though in small portions. I was warned prior to surgery that it would take the throat longer to heal, which proved to be correct.

It could be that you need to give the medication more time, or that your dosage needs to be increased to two times daily. If you are still overweight, more weight loss could potentially help. You might try drinking alkaline water, or even aloe juice (helps heal inflammation). I wish I could say this wasn't a long and unpleasant journey full of trial and error. It doesn't help that everyone's body is different and so what works for one person may not work for you, and that symptoms can vary radically from person to person. Surgery was the answer for me, but isn't a step others need or are willing to take.

FWIW, If you have been on PPIs, I don't think it is likely that you have Barretts. The risk of the Big C is still fairly low even if you do have Barretts. Best to get the scope done and put those fears to rest. If this is causing anxiety for you, that anxiety can amplify your symptoms. For me, LPR and anxiety came hand-in-hand.

BTW, omeprazole gave me crazy side effects so you aren't alone there. Esomeprazole had similar effects.

Post Edited (KitKat880) : 8/23/2018 11:30:49 AM (GMT-6)

In response to your questions...

None of my doctors ever suggested SIBO as a cause, so I never looked into it. I knew from my barium swallow that I had a small hiatal hernia, so I just blamed it on that.

For the time that I was really careful about my diet, I would eat plain steel cut oatmeal for breakfast (made with almond milk), grilled chicken breast for lunch with just a tiny bit of low fat dressing, and then the same thing for dinner. It never really made a difference for my throat symptoms, and I was on PPIs while doing it.

Coughing and vocal fatigue were not symptoms I ever experienced. Just tons of mucous and globus that wouldn't quit.

I may have had rebound acid coming off the PPIs, but I honestly don't remember. Because my reflux was silent, I don't know if extra acid really would have made too much of a difference over the course of two weeks. I don't recall the regurgitation itself getting any worse.

I don't know much about bile except that it is produced in the liver, stored in the gallbladder, and then sent to the duodenum, where it helps process fat. Sometimes the pyloric sphincter between the duodenum will let bile into the stomach, particularly when trying to process a heavy (i.e. fatty) meal. Otherwise it should not be in the stomach. I am not sure if a test showing bile ducts are fine means you don't have bile in your stomach when you shouldn't.

The only symptom that healing the esophagitis resolved was the painful swallowing.

It was really hard for me to figure out what was a trigger because I didn't have heartburn. So first I wrote down foods that seemed to cause more frequent regurgitation, but in the end I was regurgitating even just little bits of water on an empty stomach. Then I tried to cut back on anything acidic. When that made no change, I just ate what I wanted, though I did keep quantities small.

Try not to lose hope. I basically handed almost two years of my life over to this disease, and I convinced myself I would never find relief. Eventually you will find what works for you.