I developed excruciating pain in my neck, head, cheeks, ears in July 2009. I went from primary care Dr, to Pulminologist, to primary Dr to be finally told by the last Dr, after I impolored her that my pain had been severe for 4 months and the Flonase wasn't helping at all. The Dr. told me, "...keep taking the Flonase for two more months, and if it doesn't go away than frankly there is not much more we can do for you." Devasting to hear when you know something is wrong but you can tell the Dr thinks its all in your mind.
In the 4th month, I deceided that since all the Drs kept saying I had an allergy, I requested an allergist. To this day, I still don't understand why I have to request a allergist, why wouldn't a Dr refer me to one if they thought I had allergies causing me such severe pain. The Allergist examined me and said, "You don't have allergies, you have silent acid reflux." It took me a moment to comprehend what he was saing. Without anymore dialogue he gave me a book to read, ran oodles of tests, all of which came back that I had no allergies and no other problems. He sent me back to my primary who I dropped and got a new one, who then tested me for H-Palori. It came back postivie & I was put on 2 antibiotic treatments to no avail. I was in horrific pain and approaching my 5th month with no relief and working without missing a day. Finally the new primary gave me a referral to a the ENT & GI. All this takes alot of time to obtain appts, while I suffered horrifically. The GI told me on the gernie after the scope that there was nothing wrong with my esophogus or stomach. I went to the ENT and she found that I was burnt in the throat almost to where it would have caused bleeding. They tried different PPIs. None worked but I ended up being on Nexium for 2 months at 40 mg x a day. In Feb 2010 I developed severe pneumonia that did not respond to antibiotics. My GI told me he was sending me to surgery for a hernia/fundoplication, was giving me a PH study and that Nexium causes pneumonia in 30% of patients who take it. The Nexium only gave me 40% relief. I was still suffering with horrible burning pain and now pnuemonia. I limped along and tried to stop the Nexium from Feb to May 2010 when I had the hernia/fundoplication. My new primary advised me quite concerned that I had the worst form of GERDS and that I had to take good care of myself. I had the fundoplicaiton in May 2010 and although I had no surgical problems from the escophogus down to the stomach I burned 10x worse in my throat than before surgery. In that period i retired and moved out of the area. I laid in bed trying to get a new GI and had to wait 4 months to get in. During that time I was incapacitated from the pain and lost 2 lbs a day. I was terrified as I couldn't eat and the pain was unbearable. I drove 1 hour to the ER of the HMO and to my surprise the Dr had no idea what Laryngopharyngeal Reflux was and called a psychatrist because I was crying and told them I couldn't take the pain anymore. Looking back I don't understand why an ENT or GI wasn't called for me. I have had this happen before. When they can't figure out what's wrong they think its a emotional/psychatric problem. I was put in psyc drugs and vicodin until they could get me into a ENT & GI in Sept 2010. The new GI advised that most Drs don't believe LPR exist. I was dumbfounded. That was the diagnoises I was given and my surgery was based on LPR. They put me on medication for intestinal problems. I burned to death worse! I got so angry about my care I demanded a new GI, that believed that LPR existed as a diagnoises and I wanted someone who knew how to treat it. I got a wonderful GI who looks at me and listens and a new ENT who told me even though the tests were negative on acid my clinical presentation showed I was burning severely, so much so, that he wanted to do a biopsy on it. So over the next two months they took me of Nexium as my PH score went from a 40 to a .4. The surgery technically was a success but my GI feels that the surgery may have unmasked a second problem. They gave me a new test that is more sensitive and it shows I have mildly acidic reflux & my GI feels that my fundoplciation is a tiny bit loose but the Drs don't want to do another more surgery to tighten the LES, as it is too dangerous. Quite by accident my neighbor told me to try probiotics in the 5 month and I started with Align, then moved to Bio-Kurt (which gave alot of relief but I was taking 10-5 pills a day). Recently, my Dr seeng that priobiotics was working better than Carafate gave me a prescription for a year on VSL#3 DL which I've been on for a week. I'm off all meds accept VSL#3 DL and it gives me about a 90% relief. I still feel that reflux hitting my throat but I have some quality of life now. I'm hoping a new treatment, LINX Anti-Reflux, to tighten the Lower Esophical Spinchter (LES) is promising. They are testing it around the world right now so I'm keeping my fingers crossed it is the cure I've been praying for. It has been a painful horrible 17 months. Hope this story helps some people out there. When I look back at what I went through, what stands out to me, is how little Drs really understand and really listen to their patients. They just hand you dangerous drugs without asking and studying each of their patients better. At the time I got sick I was ingesting wine, chocolate and calcium citrate late in the evenings. Didn't think much of it but suspect in retrospect, the concentration of wine and chocolate relaxed my spinchters and the calcium citrate, taken before going to bed, caused my LES to not close properly anymore. I've read extensively the medical periodicals on the web and it appears from my readings that researchers believe that up to 40% of the population has LPR but it goes undiagnoised for decades. Many Drs brush the patient off by saying its allegies or post nasal drip or its diagnosed and medicated for asthma. I read that children, teenagers, young adults have this too but go undiagnosed for their whole lives. Bascically from what I read LPR is either gas or fine acidic spray that is not enough to burn the esophogus but on the throat is is devasting. The tissues of the throat are not made to get hit with hydrochoric acid. And LPR is not like regular GERDS. LPR happens all day long while GERDS is generally alot more acid hitting the esophogus or when your recline. Its a horrible anotomical illness and I'm so surprised not more is being done to find a way that really works to tighten the LES. Eating is the center of life and socializing. Its impacts eveything. I wish some great minds would work on this problem as fast as they could as the acid hitting your throat is unbearable painful and devasting for the patient and whole family.
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