Welcome to Healing Well! Glad you've joined us. It sounds as if you're in exactly the right place. It sounds as if you're doing all the right things--following up with doctors and looking for answers to what's going on.
I will say one thing about DeMeester scores. I had terrible asthma that was not controllable with steroids, and my primary care and asthma docs were tearing their hair out as they tried to keep me breathing.
I had been under treatment for GERD for probably ten years or so at that time. Like you, I never had high volume reflux or regurgitation of food. Still, my asthma and family docs both were certain that my reflux was creating my problem.
I went to my GI doc (my other docs had sent records indicating their concern). This was my second GI doc...my first one did me absolutely no good. I'd been hospitalized for gastritis/reflux-induced asthma that was dangerously bad, and he still didn't do any testing or help me in any way. Actually, he had done an endoscopy earlier, and he said there was no inflammation of the esophagus. (I was alreay on PPIs)
Anyway, I digress. He ordered a barium swallow, a manometry, and a 24hr PH monitor. The barium swallow indicated a hiatal hernia, the manometry showed normal swallowing, and some weakness in the LES. My first DeMeester score was 4. That is obviously low-normal. So, my GI doc sent me off, telling me that my asthma was not being caused by my reflux. (I was already on 40mg Protonix twice a day, and 300mg Ranitidine at bedtime.)
This was highly frustrating to my family doctor, especially. After 4 years of sick, sick lungs, and no support from my GI doc, he referred me directly to a surgeon he recommended. I saw him, and he did another barium swallow and endoscopy. That surgeon (I'm sure in consideration of the history my family doc sent along) said I'd be a good candidate for a Nissen and that I should schedule one.
I'd done a lot of research and I knew that the surgeon I chose would be of utmost importance, so I took that experience and informaton back to my GI Doc. He did another PH monitor and my score was slightly over 14, which is borderline, but still very near the high side of normal.
Finally, though, my GI doc began taking my family doc seriously. He said, that it was possible that "a few good refluxes in a day" could be enough to cause problems for my lungs. He advised me that I could continue treating my reflux with medication (which I'd been doing for years without any relief) or he could refer me to the surgeon to discuss the possibility of a Nissen.
I guess I'm telling you all this so you can realize that a low DeMeester score is not necessarily an indication that you don't have a problem. It's a picture of your reflux during a 24 hour period. It doesn't mean that you don't have higher peaks on certain days.
My surgery has made a huge difference in my life, as my lungs are now healthy again.
It's certainly not something to jump into, and is a last resort. I wish I'd pushed harder, earlier, for surgery, though. I'm now dealing with adrenal insuffiency and thin skin that tears and bruises easily because of the high doses of steroids I took while my lungs were bad all those years.
Do you have the head of your bed elevated? Bedtime is when a lot of the damage is done. You can get bed risers and/or boards or blocks to put under the legs at the head of the bed. It allows gravity to help keep things in your stomach where they belong.
Yes. In my case, before I had surgery, if I had gastritis my reflux was definitely worse.
I'm all for getting a second opinion, though...
Good luck figuring it all out! Again, glad you've joined the forum.
I'm sure others will be by soon to weigh in and offer support
Words of wisdom by Eckhart Tolle:
"Whatever you fight, you strengthen, and what you resist, persists.”
“Worry pretends to be necessary but serves no useful purpose”
“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”