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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I really want to thank you for this blog. I started having trouble with my voice about 3 months ago so my first visit was to an ear, nose, throat Dr. (ETN). He told me I had LPR. Of course, his idea was to have me go on Prilosec, but after researching and looking at websites like this I realized that meds would not get at the root of the problem. I had very, very good results with the diet recommended for acid reflux on the Weston A. Price Foundation website. It basically calls for eating a lot of bone broth soup at first and including keifer and fermeted foods. Then I kind of started taking a lot of liberties with what I eat and it came back again. But I'm getting it back under control. I think what you basically have to do is eat a lot of cooked vegetables and green leafy salads. Take the acidophilous, drink the keifer, and try to include raw saur kraut (not canned, raw - because it will have enzymes your stomach needs). Basically, I think I gave this to myself: always eating late, recreational eating to the point that I was totally stuffed, not chewing my food and not taking time to eat, and never eating vegetables! Plus, I was constipated, and I do think there is a connection with that. I sure hope this helps someone!
March 12, 2013 - 2:20amThis Comment
Hello,
March 11, 2013 - 1:59amI've never seen this bulletin board before, but I just wanted to say that I'm grateful for all your comments. I have been having similar experiences-- but too much history to go into, except that one should note that I have BOTH LPR WITH GERD (ie., heartburn). I also sing, and I'm wondering whether this LPR marks the end of my choral career? However, I'm older than most posting here, and if so, it's been a good run. I was recently dx with mild LPR-- but have concommitant medical conditions. I also take a lot of anticholinergic meds, which I believe has contributed to the problem. I agree that the PPIs and H2 blockers don't really work, nor can I tolerate their side effects (I nod off and lose my memory; it's often a choice between eating or thinking, on any particular evening). Like you, I have been trying out UK Gaviscon (Peptac), DGL, licorice teas with marshmallow, slippery -elm throat lozenges: any kind of "demulcent" or anything that soothes. Next, I will try aloe vera juice. It all helps me "a little". I also still take H2 blockers, though they knock me out. I haven't had much success with probiotics (makes my heartburn much worse), though sometimes I can tolerate them in small amounts. Occasionally, a bit of kefir helps me if I can't eat that day-- but not if I feel that my heartburn is already out of control. (I have both conditions-- both GERD and LPR-- and they "take turns").
Any updates? What about this LYNX surgery? Does Medicare cover it?
Blessings to all.
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I too have LPR and my HORMONE (vitamin) D score was 33. Just above the cutoff of 30 to be considered deficient. Personally, anything below a 50 should be considered deficient. I tried taking D3 orally but had problems with nausea. It then occurred to me to call a tanning salon and ask about tanning beds that had more UVB rays vs UVA rays. It turns out they had 4 UVB beds and doctors had been referring certain patients to their salon.
March 9, 2013 - 5:09amAfter 2 1/2 weeks of tanning under UVB bulbs, I raised my D score from a 33 to 49.5. I plan another 2 1/2 weeks as my goal is 70.
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It's been awhile since I've been on. So appreciative that others share their LPR experiences. I started this forum because LPR is so little understood. My Drs to this day say very little to me.
An update on my status: As you know in July 2009 I woke up one morning with severe unbearable pain of LPR. I didn't know what it was and spent 5-6 months trying to get help. I had a fundoplication in May 2010 after months of horrific pain, trying PPIs of all kinds and developed pnuemonia from the purple pill.
I came out of surgery and moved due to a retired and layed in bed in horrific pain, losing 30 lbs in 5 lbs. The whole time my original Drs thought there was nothing else they could do for me. But alas, I could not live in horrible pain. So I went about establishing new Drs. What a joke. They all looked at me like I was crazy. Sent me to a psy. They didn't believe me. I begged for help. They finally got me a ENT. He scoped me and founs that I was burned to a crisp and wanted to do a biopsy right away. Had the biospy in Feb 2011. Still in horrible burning throat pain. I thought I would slowly wither away. I know I couldn't bare the pain. In or around Feb 2011 I started on medical probioitics which gave me more relief than Carafate or PPIs. In fact the PPIS and medications seems to make me worse.
I limped along from Feb 2011 to Sept 2011 waiting for my local GI and regional GI to make up their minds if they would send me to an outside research center. They decided that they didn't know what I had and that they were not going to send me out to any research hosipital. They said there was not much more they could do for me.
It was devasting. I had no where to turn. I came home and went on the computer. By now I knew that my upper UES spinchter was the primary problem. The LES is slightly loose but its the UES that should be closing off the acid vapor and its not.
When I went into web research in Aug 2011 I put in "what strengthens muscles" and up popped a few articles on Vitamin D. The more I read the more I thought it could give me some relief. I knew the LES spinchter was a small muscle sof the esophogus. So I immediately shot an email to my primary to have a D test waiting for me at the lab. She did as I asked. I never gave her a reason. I just asked for it.
Then I studied the best D to take. My research seemed to indicate D3. I ordered it but did not take it till I had my test done.
My test came back 25. Really not as bad as some people's score. But still low. At that time the D test said that below a 30 score is deficient. In the spring of 2012 the D scoring was changed by the Federal agency that does that, to say that a score of 20 or above is "within" normal.
But this all got me to thinking...I had just been in the sun for 5 months learning to swim for the first time in 30 years. I had avoided the sun for 30 years since the early '70s. We were told by media that the sun was bad and to stay out of the sun. I believed it and think that there is a constellation of things that come together with LPR and I think low sunshine exposure due to our working inside alot, the latitude of where we are on the planet, the color of our skin, our weight, and our age all play into the amount of D we need.
I've researched it extensively.
My primary never told me to take D after the test came back. I wrote her and asked her, what should I do? My D is low. She advised "Like any other women you should take 2,000 IU of D a day."
I studied that further and read that intake of D so be based on weight, age, latitude on the planet, color of the skin, and age and of course time of the year.
I felt that I should take 1,000 IU of D3 hormone per 25 lbs weight. I have improved the pain of LPR significantly with D3 based on 1,000 IU for every 25 lbs weight. Its not a cure but significanely improvement.
The GI's told me they would not be seeing me anymore as there was nothing more they could do for me. So I see the ENT for a scope every 6 months. He gives me no advise. I have to really dig to get out of him how my throat looks. He says the spot that he biopsied is completley healed but that my throat is still red. I personally don't see tons of mucous like before. I still have some white acid burns on the throat but I'm not in horrible pain anymore. I just have flare ups when I eat something I shouldn't like coffee, onions, tomatoes, garlic or acidity things like lemons/oranges. I also stay away from nitrates and can only take acetomphen for pain. I can't take most medications as they burn me to death.
So I continue to hope that someday a procedure comes out to stengthen the LES and UES even more. The Vitamin D hormone has saved my quality of life. Please continue to let us know what things have helped you. I'm looking for ward to spring. And I'm thinking of taking two vacations in the winter, one in Dec and one in Feb to the equator area to get sun. There is something about the sun that makes my LPR fade away along with supplementing D3 hormone. I'd rather take D3 hormone than dangerous PPIs. Shutting down our proton pumps can lead to serious infections as the acid in our stomach kills off 50% of the viruses/bacteria that enter our system. I take Canadian Gaviscon as it has no aluminum and also a Tums on occasion. So far I'm doing better with my treatment than with the Drs medications.
eewright
February 1, 2013 - 8:27pmThis Comment
I was diagnosed with LPR in what seems like a short time but I have actually been dealing with it for years. I am fortunate in the fact that I have a doctor who does listen to me and doesn't just sluff me off. When I presented with chest pain that just continued to get worse and kept losing my voice, he ruled out a heart attack and a pulmonary embolism. I told him that the ER docs diagnosed me with GERD and he said that didn't feel right to him. He then sent me to an ENT the next day who did a scope that showed red, mucusy, bumpy sinuses and larynx. She then diagnosed me with LPR.
January 13, 2013 - 6:58pmShe asked if I get frequent heartburn, NO. Frequent sinus infections YES. Frequent bronchitis YES. Frequent ear infections YES. Frequent Laryngitis YES.. I felt like she was reading my medical history right there.
She said that I have probably been dealing with this for years since that is how long I have dealt with the chronic infections but they kind of came to a head because I choked on a piece of food the previous week.
I told her that I have been to 2 different ENTs for the sinus infections. One lasting 6 months and antibiotics didn't seem to help and for the ear infections because I have been developing vertigo with them for the past year. I asked why this was not diagnosed sooner. She told me that because I am a smoker who is slightly overweight, a lot of doctors do not look beyond that. I asked if it is possible to have the Bronchitis, sinus infections and everything else manageable by managing the LPR. She advised that it is possible but LPR is very difficult to manage. It requires many significant lifestyle changes and the use of medications at least for a few months. I am 39 years old and do not want to continue living with these chronic issues, so I am willing to do whatever it takes to get my life back.
I read some of your stories and my heart goes out to you. I am so sorry for the pain both physical and emotional that you have had to endure because nobody would/will listen to you.
I am one of the fortunate few that has found a doctor, young though he may be, that does listen and has listened to me for years. He is proactive in my care and will continue to be I hope.
Please keep us updated as to how you are all doing and what is working and not working for you. This is an under discussed disorder that needs to be brought out more. People need to realize that it is not HEARTBURN, ANXIETY ATTACKS, or MAKE BELIEVE.
This is real pain that impacts so many aspects of one's life.
I may not have my voice back for a couple of months which means I can't yell at the kid or the hubby. I am still having horrible chest pain but at least I know it is not cardiac.
I am new to this disease and am optimistic about the outcome because I do have wonderful doctors.
Keep your sense of humor. Keep your chin up, and most importantly keep demanding that something is not right when the doctors won't listen. Who knows our bodies better than ourselves?
God bless!!
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I have LPR and have a wonderful Gastroenterologist who understood when I said that PPI's made the pepsin reflux worse not better. Ironically, I rarely get burning except when I start on those things. Why ? How bizzare!
January 1, 2013 - 4:44pmMy symptoms are strong causic bicarbonate taste in my mouth that won't flush away, copious clear mucus that constantly pours out if I lean over the toilet bowl (if I don't get this out it fills my throat and causes chronic nausea) often upsetting my tummy and killing my appetite. It is simply hell on earth and started after very bad food poisoning.
I too am trying pro-biotics as does bacterial overgrowth and low acid cause this gas that brings the darn stuff up?
I have had all the tests now and am awaiting the results of my PH and motilility tests. I am considering LINX surgery as they list LPR in the list of conditions that they can treat providing you don't have a motility issue with the swallow reaction.
I can relate to the stress of it all as it's assault on daily joy of life is chronic. I sometimes despair at the thought of living like this if no medical advance is made. I have children and a great husband and supportive parents. If it wasn't for them I would want to die. My lovely full figure is gradually depleting the longer this illness is allowed to take control due to the nausea and the fact that I can only manage the lighter fresh food options.
Good luck to you all
Cathy - 43 - too young to give up hope of a cure!
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Hi Cathy. I am 39 years old and just recently diagnosed with LPR. My computer keeps booting me, so I am just going to say that if you need to talk to someone who can relate to what you are going through just for a little more support, please don't hesitate to email me. [email protected].
January 13, 2013 - 7:07pmHope you are doing better.
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I also suffer from LPRD and hope I get better someday. I basically diagnosed myself, since doctors have been useless to me. One of the docs I saw was an ENT, and he also wasn't helpful. One of the docs said I was depressed and gave me Prozac, which made my reflux worse. I truly do not trust doctors, which is a shame, because if you're suffering from something, who the hell is going to help you?! You basically have to do your own research and be your own advocate for your own health.
August 12, 2012 - 1:19pmThis Comment
Hello,
April 26, 2012 - 2:46pmIts good to know Im not the only person suffering with this. My infection happen back in July 2011, from a tonsil breakout. I was prescribed Clindamycin by an ENT and after taking this med for two months, I had to stop due to a horrible outbreak. I stop taking the med and all of a sudden I starting experiencing this horrific burning sensation in my throat. I truly understand your story, only thing is, I didn't have to wait to be referred to a specialist. I was going to several ENTs until one finally said, I think you may need to see a GI Specialist, this was in November 2011. After taking plenty of antibiotics and steroids I was being prescribed PPI's & H2 Blockers, non was helping. Finally, in January 2012, I had an upper endoscopy done minus the monitor capsule to measure my acid. After my procedure, I told the specialist that Dexilant wasn't helping my symptom. He told me to continue taking them anyway. Leaving the office pissed, I did as I was told. Until finally, I started bugging the hell out of his nurse and they put me on omperazole. Omperazole wasnt helping much, so I met with the GI for a consultation to inform him the meds arent working and I need help. He tells me, sounds like you have severe classic case of GERD. Just keep taking the Omperazole for 2 months and we'll go from there to monitor how much acid is in your body. I was confused, Im just thinking to myself, what don't this specialist get? I am in pain and these meds are not working. After meeting w/ him I decided to try another ENT (w/ a GI background) and she informed me that she saw GERD on my vocal cords and that I have LPR and guess what she said, to continue taking the Omperazole. Really?! (These doctors are hilarious). I wasn't and haventnot gave up. I no longer deal with the first GI Specialist. I have a new Dr., who wrote me so many meds to take that after three days, the burning symptoms came back in no time. He then referred me to a new GI. This GI was nice, but to fast. He informed me that he understood everyone body is different and that he wanted me to try one other med before considering doing another Upper Endoscopy procedure, because from my first report it shows that I have a mild case of acid reflux . So I agreed to it. He put me on Carafate. It probably help for a week and a half before the burning returned. I called him and we scheduled for the 2nd procedure for next week. But, behold, I did some research because at this point, I was considering surgery, but after reading how many people suffer just as bad after the surgery, I threw this idea out the window. Come to find out its being said that the best way to cure this disease is to change your diet, which I have done, and to possibly consider curing this disease the natural way. I have not gone for my second procedure just yet. I have decided to work with a hollistic doctor, who highly understands my pain. I just met with her Monday, and she informed me about probiotic. I ordered it online since it was cheaper and Im hearing great reviews about this product and Im praying to God this stuff will help me out. Because I am tired of being in pain and popping pills, especially when they are not helping. To be honest with you all, I think the med causes the symptoms to be worse. So right now, Im just taking Nexium until this arrive. I pray for all of us who are suffering from this and will get well soon. I have to get off these meds. They arent doing anything and so isn't the doctors. Let us know how you are doing and I can keep you inform as well.
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Responding to the 25 yr old. I started this blog because I suspect that LPR is more widespread than we realize and our collective experience is not "unique". People are walking around diagnoised incorrectly or told that its an emotional problem. If your in horrific pain, months on end, it can make you lose your grip on life. I felt like I was falling apart and worked so hard to keep my life going, knowing all the while something was really wrong, but I couldn't get anyone to believe me. My heart goes out to you being only 25 yrs old and having LPR. If my experience can help you a little, try to keep you diet as akaline as possible. Not easy. Very difficult. Go for a second opinion on the hernia/fundoplication. It may help some people but in my opinion, for "simple atypical LPR", that does not respond to PPIs, you should weigh very heavily about having a fundoplicaton to fix it. It helps only 50% of the patients. LPR is a strange anatomical problem that is caused by either a gas or micro spray from the stomach, that escapes because the LES and perhaps the UES have lost their function of closing off the stomach. Its a real scary illness to have as its simply not good to have any acid hitting your throat. Even weak periodic acid hitting the throat causes devasting pain in the throat and throughout the head area, cheeks, ears, and neck. What I am trying the last two months is mega doses of probiotics. My neighbor told me about it when I was searing to death. Remember, that every time your throat gets hit with acid, it takes awhile for it to heal. LPR is reflux in an upright position. The throat gets hit between a few times a day or all day long. Hydrocholric acid on the tender tissues of the throat takes forever to heal. It's a burn. My throat burning was 10x worse after the fundoplication. From what I understand my LES is still a "little" loose after the fundoplicaton. Something is escaping. I have managed to bring the pain level down by mega dosing on probiotics and recently my GI Dr went ahead and wrote me a prescription for a year for VSL #3 DS (sorry I may have incorrectly blogged "DL" instead of "DS" earlier on the probiotic name). I've been on it about 1 week and I have had a small incremental improvement. I've been supplementing with the previous over the counter probiotic, Bio-Kult, that I used before the VSL. I am thinking of increasing from two pkgs a day of the VSL to three, as the last few days I have pain behind my eyes, nose and ears. The ENT scoped me few weeks back and said my throat is still red but he sees an improvement. He told me I would have to learn to live with this and manage it. I'm scared. I know from my research that if the throat stays chronically inflamed, if there is a cure someday, the tissues may always stay inflamed. I'm scared about having this for the next 30 years. For me I'm focused on a cure. I'm going to give it my best efforts for awhile to see if I can control the acid burn on the throat with mega doses of probiotics but if it doesn't work then I'm going to ask to go to a major hospital center and see a specialist. I stongely believe that if a way can be found to effectively make the LES close and open more effectively it will solve the problem. But it is hard for research Drs to make head way on new therapies when there is alot more money to be made selling PPIs. Sad truth, but money drives medicine. What is so sad about having LPR is that your are healthy. You just have an anotomical problem with the LES closing tight and so far there are no real good methods for getting it to work better. The surgeries out there aren't terrible effective. Lets hope that the LINX Anti-Reflux will be the best method yet in "curing" this horrible problem. We have to hang for for several years of testing and to receive government approval on it. I hope I can hang on and deal with the pain until then. Please check in from time to time.
December 18, 2010 - 5:38pmThis Comment