Hi everyone: just wanted to add my story. I'm still experimenting on myself and have had some success. I too find LPR one big mystery.
My LPR history started in July 2009. It was a nightmare getting diagnosed. I don't know how I held on to my sanity due to severe unbearable pain. But when it was finally diagnosed it continued to be a nightmare as nothing worked for me. I had every test you can think of. They started with antibiotics for H-Pylori. Tests showed that I had an acid score of 40. They started with the lower level PPI's. They didn't work. They slowly introduced other PPIs. I soon found myself on the highest dose of the purple pill for 6 weeks when I came down with a severe case of pnuemonia that wouldn't go away. My legs felt like lead weights. It was a nightmare...horrible pain, pnuemonia and my limbs starting to give out on me. How I continued to work and functioned was due to sheer embarrasement that I didn't want people to know how sick I was and that I had lost control of my body. The throat/head/neck/ear/cheek pain was torture. I found out when ENT scoped me that I was burnt to a crisp on my vocal chords. I had lost my voice as well. I couldn't talk but a few seconds. But that was secondary to the severe unbearable pain.
When I got pnuemonia the GI said he was sending me to surgery as the medications weren't working on me. I finally got to the two surgeons, one said if the PPIs didn't work that I only had a 50/50 chance of success. She strongly discorage me from having surgery. The other Thorastic Dr felt I had a 95% of success. I had the fundoplicaiton surgery as I was terrified of being on PPIs and I just wanted to get out of pain and fix the problem. To my horror I came out of surgery 10x worse and began a slow, painful, diblilating decline. There were no answers. In the mean time, I moved due to a retirement. I laid in bed in excruciating pain and lost 1-2 lbs a day. This lasted about 5 months. When the new Drs saw me they thought I was making it all up. To be honest the new GI treated me with disgust. By this time it felt like I had 5 balls in my throat and I was steadily getting worse. I developed pain radiating down my arms and legs. I suspect it was the nerves from the throat being burnt so severely that it radiating down my extrementies.
I also didn't even bother to tell my Drs, as I was so distraught and they didn't believe me anymore, that I developed incontinence and all my joints hurt. I couldn't lift my arms to shower or put on clothes or comb my hair. I couldn't function and going out to eat with my husband was torture as I was in excruciating pain. My Drs sent me straight to mental health. So my family thought it was all in my head too. I was like a burn patient only the burn was inside my throat and it was unrelenting.
My GI finally got me into the new ENT and he confirmed my throat was in bad shape. He said he had to do a biopsy. I demanded a new GI. I did not want the former GI who treated me with distain. The new GI sat in front of me and said quietly that they believed me now, that I was burned to a crisp but they didn't know what to do. They tried one medication that burnt me to death 100% more. I felt that if I didn't wake up it would be ok. The pain was off the chart. They took me off it and put me on Carafate. It gave me maybe 10% help but I found myself swallowing oodles of bottles of Gaviscon to no avail.
I slowly began to take over my treatment. The GI didn't fight me on it as she was at a loss as to how to help me. I began large doses of probiotics and when the GI saw that it helped me she gave me a prescription for medical probiotics. I took them at 900 Billion per packet and I took 4 packets a day. My GI said it was safe to do. The probiotics gave me a 30% improvement. I was still in pain but little better. I stayed this way for 7 months. Still horribly miserable with pain but able to get up and function, but I worked hard to hide my pain with my family.
7 months later my Gi and the Head Regional GI told me that they were going to cut me loose and turn me over to the ENT as they could no longer do anything for me...what a horrible thing to experience. To be in pain and have the Drs say they can do nothing more.
My ENT made it clear to me that he would only check my throat and that there was no advice he could give me. He in fact only wanted to check me for 6 months. I insisedt that it continue. I wanted to keep getting at least my condition monitored and having my throat scoped and that it be documented in my chart.
I came home that lonely day in August 2011 and was so despondent and angry, I said to myself I'm going to research everything and try to find somehting to help myself...
I typed into the web, "what strengthens muscles?" and up popped a few articles on Vit D. What I read felt logical and I decided that it was worth the try. I researched the best D to take and I immedately emailed my primary and asked for a D lab test for my level. I was not as bad as some people I've read about but I knew I had avoided the sun for 40 years since I was a young women. I never went in the sun and had for the 1st time in 40 years been in the sun for the 4 months prior to my D lab test. I suspected D could help me.
So in Aug 2011 I began my experiment on myself as I had nothing to lose. Within two days I felt a decent improvement...and each month following I have improved slowly and steadily. The joint pain disappeared. The incontienence disappeared. The swelling of my ankles and wrists disappered. My legs got stronger. I finally slept throught the night for the first time in 2 1/2 years. The LPR was not an overnight improvement but it was slow and steady. It has been 11 months and my diet is almost normal. I only avoid raw onions and anything with tomatoes. I have no more severe pain.
My ENT has checked me in Oct 2011 and May 2012 and when he saw me in Oct 2011 he said the spo,t that was burnt to a crisp, that he biopsied, was compeltely healed but that my upper throat was still angry looking. He asked me what I was doing and he noted in my chart I was taking Vit D3 drops. In May 2012 he said my throat was less red/angry looking. I see him again in the fall of 2012.
LPR has slowly disappeared. I only have small wisps of it occasionally and since summer started I have felt the wisps almost just about disappeared. It's just a very faint vague feeling. A great deal of the time I don't feel any LPR. If I didn't know I had LPR I would think I had a little plugged up ear once in awhile.
What I would like to share with you all is that Vit D help me so much. Am I cured? I can't quite call it that...at least not yet. I don't feel it will ever be cured but I have managed to help myself more than any Dr, medication, or surgery could. I feel that because I'm in the sun every day now and taking Vit D3 that I'm better. But I feel that I still have to see how I am doing when winter comes. It could return when the sun's rays are weaker. But I have quality of life now.
Another point, on the last Aug 2011 visit with the Head Regional GI, when I pressed him for answers to my questions as to what I had, he said he thought I had a nuerological problem and that my vagus nerve may be causing my problems.
I have never had GERD. I only burned in my throat. And now I'm so much better with Vit D3. I test every 3 months and I have gotten my Vit D score up to 65. It's been a very difficult process but I'm relieved to have Vit D3 to help me manage this horrible anatomical illness. I still privately am terrified that it will return but at least I have hope. I thought I would die from this and I was plannning my final documents.
I will never forget how terrible my Drs treated me. I will never forget how they put me on psych drugs telling me I had stress. I was so defeated that I gave up fighting. All I could keep telling them was that I was burning to death. It was the most depressing thing to be in so much pain and have Drs treat me silently with distain for brining them a problem they couldn't figure out. The last set of Drs told me there was no such thing as LPR. But they couldn't tell me what I had. And they wouldn't give me a referral outside of my HMO to see experts. It truly was an eye opening experience to see what happens when one has a chronic problem. So I have become my own Dr and I have developed my own treatment plan. And my HMO continues to take my premium every month. Its like being in the twilight zone.