New Member e1wlpr

As one of my former primary Drs told me as I was suffering from pnuemonia caused by PPIs and still enduring searing excruciating pain of LPR non-stop, "...You have the worst form of GERDs one can get.  Take real good care of yourself."  That is the only clarity I was able to obtain from all the Drs I have seen.  Most Drs. look at me politely and just listen.  They don't say much.  They have no advice to give.  One Dr mocked my description of my symtoms by saying in front of my husband, "...WHAT! I never heard of such a thing!"  My  husband didn't understand and joined in.  At that point I had been enduring searing pain non-stop for 15 months and had had a fundoplication that made me 10 x worse.  Yes, I was real scared.  No one realized I was in a pain crisis and unable to bear it any more.  I thought I was done for.  But I never gave up on my own research and thinking things through.  I think the diet with salads is a great idea.  Yes, anyone who has suffered with LPR knows how horrible the pain is.  My pain radiated up through my head, my cheeks, my ears, my arms, behind my nose, and yes even down my back and on the surface of my skin to my legs.  When the acid/pepsin hits the throat, the throat is only one layer thick as apposed to the esophogus which is multiple layers thick.  The nerves in the throat are being burnt through with the acid/pepsin hitting the delicate tissues of the throat.  That is why most people with "simple LPR" only burn in the throat.  The micro-spray is very small but the throat tissues can not take any acid hitting it and it sears right through the nerves that run through the throat.  Unless you have experienced LPR, one can not imagine how horrible the pain is.  A burn victim understands.  And they are usually on pain meds.  LPR patients don't generally get pain meds.  We are left to suffer silently while we pop PPIs that do nothing for us.  When I woke up each morning I often thought that if I didn't wake up it would be ok because the pain was so unbearable.  I think LPR can vary in severity as well.  Sometimes people can go for years with something like a post nasal drip feeling.  Others get stuffy noses.  Others notice bad breath or crackling sounds up their throat.  The varying degrees of LPR can get as bad as acid/pepsin burning severely the entire throat.  One can see the white acid marks often right into the mouth. (the white acid marks are the throat tissues natural response to try protect the throat tissues when acid hits the throat.)  My acid marks went right up to the back molars of my teeth and could clearly be seen.  My throat looks burned and really angry (my ENT says)...but I have managed since April 11 to research how long it takes to digest food.  I found that red meat takes 2-3 days to digest and pepsin is produced by the stomach to break down the meat.  While seafood only takes about 45 minutes to digest.  So I've tried my own "cure" by stopping meat, chicken, pork and I only eat fish and the searing horrible pain has subsided immensly.  So I think the green salad diet fits very well into the idea of looking at the types of acid the stomach produces to break down food and eliminate the foods that causes the type of acid that burns the throat.  From what I have read it appears that pepsin could be the silent culprit.  Or at least a substantial amount of the problem.  I have not had any meat, chicken or pork, bacon, sausages or nitrates, citrates of any kind since April 2011 and it has helped me so much.  I still have LPR but I'm managing it with mega doses of probiotics and no meat.  I don't drink sodas.  I have sleep apnea which may contribute to stomach juices getting sucked up at night so I wear a tongue holder (called AVEO TSD) I bought on line from New Zealand.  The C-Pap caused me severe allergies when I wore it for over a year.  And it was so hard to wear and take off in the middle of the night.  I disturbed my husband all the time.  I try not to eat too late in the evening and I eat more vegetables and fruit (no onions, tomatoes, peppers, no seasoning like pepper or hot seasoning).  We bought a bed recently that elevates my upper torso, as I slid down all the wedge pillows I used for 2 years.  I woke p 50 times a night trying to stay elevated.  I'm not cured of LPR.  I have to monitor it all day long and take mega doses of probiotics to change my stomach environment to be more alkaline.  I drink spring water only.  Its hard but I'm doing better.  My Drs to date have not been able to do anything for me.  One good thing my GI did after the fundoplicaiton was to take me completely off PPIs. My acid score before sugery was 40 and after surgery it went to .4.  So the surgery helped but I felt 10x worse!!  It was horrible!  PPIs did nothing for me as my LPR is non-acidic I think.  My GI thinks that I may have had two problems.  The surgery helped one and I may have another problem which they can't identify.  The fact that not eating meat of any kind helps, tells me that pepsin has a role in my searing throat problem.  LPR is quite a common problem that is not recognized by most Drs.  My research indicates that up to 40% of the population has LPR and it goes undiagnoised and is not recognized as LPR.  My GI is very nice to me but when I gave her a print out of LPR from a leading university near by she was stunned to see LPR listed on its web site as a speciality.  She said, "where did you get this print out!?"  I said where and she replied, "I went there to do my internship and I never heard of it!"  The next time I saw her she said, "The next time you see articles like the one you showed me, please bring them in."  LPR is now listed on my ENT and GI's sites.  They still don't have any idea how to help me.  I am teaching them how to manage LPR. (And I pay a premium to teach them!)  So that is my story.  I hope some of this helps someone out there get better.  LPR is a dibilitating and extremely painful anatomical problem that one generally has to manage by yourself and generally I find that you receive no sympathy or support as no one understands it and thinks your making it up.  Its heart wrenching to be sick and not believed.  This is what I have gone through.  Please let me know if anything I have written has helped you.  Together maybe we can help each other get some quality of life back.