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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Add a Comment38 Comments
Hi, thank you for this powerful andd truthful account of your experience with both lpr and the medical community. I have had the same experience and it has been deeply troubling and a challenge to survive. Many a night I pray to make it to morning only to pray again to make it to night, the suffering is indescribable,
Can you provide us with an update in hopes you are better or have learned something that might help us all...is the Val still working? Any new findings?
February 25, 2012 - 9:24amYou are not alone, I am battling still.
God bless you, Elisabeth
This Comment
I have been suffering from what I believe is LPR for 6 months now. I too have the horrible burning pain in my throat which is constant. I had an endoscopy done and they found a hiatus hernia and a loose LES which is probably what is causing the LPR. Thank you so much for sharing your story especially the part about having the fundoplication. I was convinced that the surgery would be the answer to my problems but your story has made me reconsider things.
I have tried all the PPI meds but they all make the burning worse for me. My GI doc simply did not believe that the PPI's were making my symptoms worse. I have also encountered many doctors that think the pain is all in my head and I have been told countless times that my problem is anxiety when my real problem is being in constant pain.
The 5th primary care doctor I saw has finally referred me to an ENT to 'reassure' me. I know the ENT will find acid burns when they examine me, however I do not hold out much hope that they will be able to do anything for the pain.
The trouble is that LPR is a fairly poorly understood condition. I think a lot of doctors are baffled by the condition but do not want to admit that apart from PPI meds, there is little the medical world knows what to do about this disease. I think this fear of the unknown world of LPR is leading a lot of doctors to diagnose things like anxiety rather than telling their patients that they don't know what to do. I certainly hope more research is done on this horrible disease as I am only 25 and am currently facing the prospect of a life in constant pain.
December 18, 2010 - 2:36pmThis Comment
Anon - Thank you for sharing your story, and for providing so much helpful information about laryngopharyngeal reflux. It's painful to read about what you have been through to simply get to the right diagnosis and to get the care you need. Hopefully your comments will help keep someone else from having to go through the same thing.
It's wonderful to hear from individuals such as you who are not only advocating for themselves but who also see the need to advocate and educate on behalf of others. Thanks again and welcome to EmpowHER!
December 17, 2010 - 4:48pmPat
This Comment
Thank you Pat. The pain of LPR is horrible but one of the toughest things to deal with is when a Dr thinks its a mental problem and you know its not. It gets worse when they actually send you to a psychiatrist and give you psych drugs for a urgent physical condition. I'm not sure how I got through it. I've read some articles were people have died from it as Drs didn't know how to treat it or they just brush you off just to get you out of their office. A Dr should never tell a patient in horrible pain to keep taking medicine for 2 more months and if the pain doesn't go away than frankly there is not much more they can do. What a way to leave a patient. It is outragious. Part of me wants to write my medical organization but I know my letter will be thrown out and nothing will change. Its all about money and getting you in and out of the office, taking your premium, and not doing the right thing for the patient. I wonder if there are other people out there that have had similar experiences. I use to believe in Drs now I don't.
December 17, 2010 - 7:31pmThis Comment
Hi all, This is an email that I sent to my specialist. The ironic thing is that he had seen the extent of my reflux. Two glasses of it over 48 hours when I decided to spit it up instead of swallowing it back down with fluids. He had said he had seen enough and that if I could not manage the 24hour it would be ok but he did need the motility test. I did both and below picks up the story. However, looking at the posts my thoughts on surgery should be met with caution.
Dr London,
Many thanks for your help over the last few months. I do feel disappointed but not surprised that there was no available or effective treatment or medications for my problem at the moment. My story is typical of many I have read who suffer with reflux into the throat area. Also, please do not think I am aiming these thoughts directly at you but more at the system as it stands as a whole.
Whilst some reflux into the lower oesophagus (only) is normal and the area tolerant of a significant number of episodes, I can understand that the number of events into this area must be measurable/recorded as a high amount to be considered extreme. From the research I have done it would appear (and my case and symptoms support this) that should the reflux pass through the next valve and into the throat the tolerance of the tissue and larynx is much lower before the trouble starts. Perhaps it is a thought that in cases such as mine any reflux events should be considered abnormal. Surely it should be judged on different barometeduring our consultation today that my reflux events over 24 hours was considered in the normal boundaries - Why then do I suffer on a daily basis(many days all day) with copious clear sticky mucus, nausea and a nasty taste? It is no way to live long term and my plan must be now to find an institute that recognises silent, none burning throat reflux for the intolerable condition it is.
With the above in mind, I am concious of the drawbacks of internet research and have been watchful of the source of the information I have been reading. I have built my opinion of the above by picking out information which would appear to feature in many different articles on the subject of reflux that comes right up the oesophagus. I wanted to understand why this happens to some people and not others. I wanted to understand why I did not respond to the PPI's that thousands of people get full symptom control from.
I very much appreciate the investigations that have eliminated the extra worry of what else underlying could be causing my reflux. This has given me peace of mind in this area which is a massive step forward in the right direction as stress no doubt exasperates this condition. Another area that I plan to keep to a minimum if possible.
I will try the final suggestions for medications that you have given me today, along with sticking to essential diet modifications that I have found bring at least some relief. I am currently 4 days into a gluten free month to ensure I also rule out a gluten sensitivity. I still hold out hope for a more permanent solution to be found. Perhaps at some point in the future a pepsin inhibitor will be developed such as when they broke through with acid management due to the PPI drugs.
I will also be watching the LINX system surgery with a keen interest but will take your wise advice and be objective to ensure it's longer term safety and success rates, particularly with atypical type reflux beforehand.
Regards
Catherine Roberts
February 1, 2013 - 2:28pmThis Comment
Hi Catherine, how are you doing since last year Feb 2013?
Since I last wrote my LPR has improved. Not cured. But I have almost a normal life. I keep my Vitamin D score hovering at 70-80 and get 10-15 minutes of sunshine every day. Something about sunshine can't be replaced.
After much research and connecting the dots, I think low D levels may be one of the main reasons for the UES to develop atrophy of sorts and not close off the stomach acids that rise in most people all the time. Low D levels affect the strength of muscle tone I have a hunch. And I have a hunch I have been very low D levels most of my life. It results in so many illnesses, they are too long to list.
Even though I got my D levels up where they should be I suspect that low D levels for too many decades causes permanent damage.
One of the facts that I ran across, as I continue my research, is that the esophagus is similar to bone tissue. Like cartilage and therefore needs Vitamin D. In fact, what I have researched is that the entire esophageal system is lined in Vitamin D receptors. In fact all our organs are. That right there is a clue to what I believe caused my LPR. It's a hunch but I feel strongly it has a great deal to do with it.
Obviously our eating patterns in modern society are the pits. There is not doubt about that. But I keep coming back to why children and babies get LPR. They have not eaten for that long to develop sphincter strength issues. In our cases, low hormone D levels illnesses presented in esophageal dysfunction. But low D levels effect everything in the body. And the list of illnesses one can get being low D is so long...scientists are still learning about what it does in our body.
I'd like to know how you are doing. I have a life now and test often and keep my D levels at 70-80 score and LPR fades away but not cured. If I have garlic, raw onions or tomatoes of any kind I quickly find out that LPR is still there but not severe. Please write and let us know how you are.
May 15, 2014 - 8:46pmThis Comment
Hi Catherine: sorry I answered earlier this evening but should have hit "reply". Wanted to add to what I wrote earlier this evening, that in Nov 2012 I was at a score of 59 in my D test. I'm aiming for the high end of the D score of 80. It's not easy getting there. It's difficult "filling" the "empty Vitamin D hormone tank". It takes awhile. But it certainly has given me my quality of life back. I read the Vitamin D Council (of San Luis Obispo's) monthly newsletter and do my own research. In my latitude on the planet I'm at latitude 38. At that latitude, unless one supplments, one will never make enough D on the skin from the sun and therefore supplementation is necessary. D has not cured me but it took away the horrible pain of LPR. I think people who live above the 37th latitude are at great risk of all types of illness and I think part of LPR is a constellation of health issues that come together. I still come back to the question of why babies and children get LPR and feel that there has got to be one common denominator. And the low Vitamin D hormone score appears to be the common denominator. I'm at a place in my research where I wonder if decades of low vitimin D causes permanent damage that can't be "cured". If we can figure out why the UES goes "limp" we can try to figure out a way to stop the micro acid spray from hitting our throats. Meanwhile, keeping an alkaline diet, probiotics, Vitamin D3 drops, Tums and Gaviscon are how I'm treating myself. Yes, lets hope the LINX system works. LPR is like being a severe burn patient except the burn agent never stops hitting the throat. In my opinion it is a seriouos anatomical problem that most Drs just don't get how horrible the pain is.
February 1, 2013 - 10:31pmThis Comment
PS He did not reply to me!
February 1, 2013 - 2:30pmThis Comment