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
I started this LPR blog back in 2010. You will see me on this as "Anonymous" and "Elena". Tho not all the anonymouses are me! Other people happened to use the "anonymous" name as well. It is now Oct 2018 and it is almost 8 years since I started this blog. I remain in remission of LPR tho on rare occasions have a bit of vapor go up my throat. Not often though. I do hope LPR or silent acid reflux will remain in remission for the rest of my life. I wrote my story of recovery with the intentions to share it in the form of a small book to help others in 2015. But then I thought who would be interested in reading it. So I put it away for another 3 years. This year I was about to put it away permanently and decided I would be remiss in my moral obligation to share something that helped me if I did not share how I managed to get better from a severe case of LPR/silent acid reflux/burning throat illness. So I wrote a very small book that I published in 2/2018. The story is compelling and I'm hoping my story will help people across the planet to think about prevention and about their illnesses in a different way. My story is called: "A Lifetime of Misdiagnosis: Triumph Over Illness" by Eva Cardoza King. In my book I share my theory, as a patient, why I think D3 and sunshine on the torso worked for LPR and why I recovered from a leaking bladder and locked up shoulder blades as well. Additionally www.grassrootshealth.net wrote an article on me: https://grassrootshealth.net/blog/fibromyalgia-catch-diseases/ Until I saw the article I did not know I had fibromyalgia all those decades I dragged through life. Recently I won a small award for one of the best health books of 2018:
October 25, 2018 - 4:14pmhttps://bookauthority.org/books/new-health-books?t=156fyg&s=award&book=1980274363
To your good health,
Eva Cardoza King
This Comment
To the original poster or anyone who knows the answer:
I am interested to know why you had pain in cheeks, neck and head. Has a Dr ever given a reason for LPR causing that? I have pain in throat, neck shoulders, lower half of face, metallic taste, PND, what feels like tonsil pain/burning but it goes into my neck/shoulders to so ive never considered reflux or anything as a cause but a few times when ive taken antacids the problem has subsided the next day for a bit and also ive noticed from feeling ok to eating the pain can suddenly come on. I cant find many links other than this site as to pain extending from throat or chest.
March 17, 2017 - 4:21amThis Comment
Hey ! My name is Christine and I am a singer- I have been suffering with LPR the last 3 years - I found something that works for me and I would like to share - if I can help even just one person I figured writing this would be worth it.
I learned LPR is really less about the acid liquid coming up and more about the Pepcid vapors. The latest studies being done talk about how with LPR sufferers, Pepcid vapor can come up at any time day and night and damage cells- before they used to think Pepcid was inactive - after further studies they discovered the Pepcid just being present on the cell damages the cell on the inside and the outside of each cell... One vapor bath (I'll call it) won't kill the cell but almost kills it over the course of 12 hours after the initial vapor bath - so that's why when you are feeling the burn for so long after the event you don't know why- it's Bc the Pepcid is infiltrating into the cells long after... Here is where the acid comes into play - just think - Pepcid plus acid or acidic food- equals explosion - drinking apple cider vinegar after a Pepcid vapor bath is like throwing a match in a room filled with gasoline- it makes the already damaged cells even worse - further damaging and killing cells.
What they discovered so far to help(and what helps me) is a couple things
- 1 - alkaline water 8.8ph and higher will help wash the Pepcid off the cells -so a bit after a meal I sip and gargle 9.5 ph water- this helps stop there from being an explosion of you eat anything slightly acidic later- it also helps the cells from being damaged 12 hours after !
(Side note) - I also try not to over eat-( I found I can be full but if I gorge myself with food it isn't good lol)
-2- I haven't tried this yet- Bc the alkaline water and not over eating and staying away from super citrus stuff has been working - BUT - the other thing that has been discovered is Sodium Alginate - when mixed with baking soda and crushed tumms causes a raft barrier in the stomach that brings down the vapor count dramatically- some people are mixing this together to take it the cheep way- if u want to go the expensive route - Gaviscon Advance from the UK ONLY - is the mixture that works to create the raft barrier- you can buy it off eBay and Amazon - but it can get pricy - but apparently this really helps lower the ph acidity of the vapor to .05 - which is amazing!
Like I said I haven't tried it yet - but people are loving it...and saying it helps- I'm going to try it soon.
I hope this helps someone - know that you are not alone- and it is possible to live a happy life with this- sometimes I think I got this so that I would eat better ... Food is my only vice - now I am off the candy, gluten, and all the junk- and I feel great/ you find out what sets it off for you over time - but while you are figuring it out/ it is so helpful to be aware of what is happening in your body- and it was especially helpful to know that now there are tactics to get rid of the pain!
Love you - good luck to you
March 13, 2016 - 5:43amThis Comment
Thank you for your post. You are so right. I have another trick. Gargle with sodium bicarbonate and water at night or after a meal will help too. Just a teaspoon of sodium bicarbonate in a small water bottle will work.
April 6, 2017 - 12:23pmThis Comment
You bring me to tears. Iam 35 years old, was pregnant with twin girls, got a terrible Infektion and was put on 5 different antibiotics. I lost One of my girls as a still born, my Second Girl survived but was born extremely premature ( 16 weeks early) After that there followed 6 weeks, in which it was uncertain of my Baby girl World make it. I was stressed like hell not sleeping or eating properly, just fast Food an Late meals. It started one Night four months ago When my throat got burnt, I thought I had to die. Since then my life has been hell every single day. The pain is unbearable. Nobody listended to me, they told me it was just in my Brain because of the difficult times I had to go though. I was sent to Psychiatry and was put on antidepressants which just had side effects and didnt do any Better on my throat burning or swallowing Problems.
March 3, 2016 - 5:18amMy life is almost unbearable because of the constant pain I am in.
I am mother of a wonderful little Girl, Not able to just relax and enjoy the time with my baby.
I had to diagnose myself but still not able to find anything that brings relief.
Its a nightmare.
Please tell me what helped you to get at least some Relief.
Iam so desperate. Like you said just sitting at home Not able to socialize.
I was so moved by the words you wrote because it describes so well what I have been going through the last 4 months.
If you have any Information on how to ease these symptoms please write back.
Sending you all the best wishes
Dina
This Comment
Dina, I am the lady who first posted the original on this. Since everyone has an antonymous it is hard for you to discern which of these comments are mine. I have added over the last 3 years several comments. I have studied on my own why I got better. I think I have a basic understanding of why. I read the science of sunshine and D3 constantly. Literally everything on it. I am convinced my LPR was caused by low sunshine throughout a life time and low D levels. I can not tell you what to do. Though I ache reading how much you are suffering. I can tell you what I did to get better. It may not work for anyone else. But it did for me. My four teams of doctors...not one of them took a D or B12 test on me. Ever! After studying frantically in 2011, after all my doctors told me there was nothing more they could do for me...I studied and researched weeping most of the time. I thought I would die a slow painful beyond words death. I was slowly dying from not being able to eat or swallow properly as my throat was so ulcerated from acid vapor burns I had for 2 1/2 years. I was beyond ability to cope. How I stayed alive long enough to figure it out is a story all its own. My doctors were to busy, too focused on patent medicines and procedures and surgery. I tried everything they recommended. In the end they got cold probably because I was starting to ask to go out side of my provider for second opinions and they didn't want to pay for it. Anyway, during the 5 months before my accidental discovery of lack of sunshine on the torso and low D levels probably for my whole life, since my mother carried me, I also developed progressively leaking bladder. Worse and worse as the weeks and months went by. In those last 5 months before my discovery I also developed severly locked up shoulders blades. I was not only going from bad to worse after a nissan fundoplication, but now other parts of my body were not functioning properly. There in lies the mystery...I had a nissan fundoplication for LPR and tests showed I went from a PH study of 40 to .04. The fundo worked at least for the lower LES sphincter. But there is nothing that I can find for the UES. There is lies the problem. We have an anatomical problem. The sphincter at the top of the throat is not closing properly. Perhaps it even includes the lower sphincter. I'm not a doctor so I'm drawing from what I read. When I accidentally put a query into the web and asked "what strengthens muscles" up popped an article that athletes used Vitamin D to strengthen muscles during excercise. I remember looking at it...and it was one of those "ah ha" moments that made my whole brain race. I looked at that article and it hit me first, how is it that I did not know that D is made on the skin by sunshine. I did not know this!!!! I asked myself incredulous how was that I did not know this!! I'm in my 60's and I could not believe I did not know this basic fundamental science! And then my mind went into one nexus after another. I had pieced it together what was wrong with me. Most of us live at high latitudes on the planet. And on top of that most of us, since utero, have low D levels because we are inside all the time. Through evolution we roamed out in the sun. But then we came inside to do our living. In there lies the answers to so illnesses. I did not realize at that moment that my research on my illness was only the beginning of my discovery that 50-70% all modern day illnesses are directly linked back to low D levels all of our lives. Even people who live at the equator have low D levels because even they are staying inside to work and play. Even when we all go out to ride a bike, take a walk, go the beach, we either lather on sun screen, wear a hat and clothes covering our most important areas that make D on the skin. I sit here writing this and I still can not believe that this science of sunshine and higher D levels is not part of preventative medicine. Like you my doctors at the end blames my LPR on "some unknow stress". Pure misdiagnoses. In fact, when I examine all the illness of my whole life they, in my opinion, are directly connected to low sunshine and low D levels. So what is take D3 based on weight. I take 35 IU of D3 x each pound of weight. I also get in the nude and sun at the high sun hour. I don't overdo (20 minutes as I'm fair) and I don't wear sunscreen. I'm careful not to burn. I have a private backyard so I can do this. It took only 24 hours on D3 for the leaking bladder to clear up completely as well as the locked up shoulder blades. I was shocked...still am. I ask myself all the time how come my doctors didn't try this. How come I had 3 endocronologists, who study hormones (D3 is a pre-hormone), and not one of them ever thought of testing me for D. It goes beyond the pale....I'm just so disgusted I suffered so much....and I'm deeply troubled that the entire world population is at great risk for something so simple to prevent. When I look at the list of illnesses caused by low D levels and low B12 I'm livid that it is not part of preventiative medicine. Additionally, I eat lot more greens and raw nuts like sunflower seeds, almonds and pistachios. All of these provide so many co-factors for D to work. Magnesium is one of the most important co-factors that I make I get naturally in my food, and I take a epsom salt bath twice a week to get magnesium dermal. I also use a bit of magnesium oil on my skin as I think getting magnesium naturally through the skin or food is a better way. Though this is only my conclusion after all my personal research. Because I started off a bit too low on D3 for the first two years I think my LPR was really slow to dissipate and go into a type of remission of sorts. Had I taken D3 at a dose based on weight it might now have taken me so long to slowly have LPR fade away. But today I can say that my LPR is in "remission". I keep my D3 levels hovering at US score of 70-80. And I notice that whenever my D score falls below 62 LPR starts to ever so slowly come back. What I do then is take 10,000 IU of D3 for 3 straight days and then drop back down to the amount I take based on weight: 35 IU D3 x each pound of weight. It's been almost 5 years and I see slow imperceptible improvements in my total health. My legs are stronger, my eyes have a better exam outcomes, I'm not puffy anymore, I sleep better, my skin under my eyes are no longer dark, I don't get as many colds...I feel better than when I was 20 years old. I spent my whole life so tired. I dragged through life. And so many illnesses that doctors couldn't explain. I suspect it was all caused by low D/low sunshine my whole life. I could weep for all the populations of the planet who suffer with so many illnesses and I suspect the root cause is low D levels since utero. Too sad. I suffered so much. I don't know how I didn't succumb. I had so much to live for. I literally was a severely burn patient on the inside of my throat but my doctors seemed indifferent and they did not act like it was critical health problem I was dealing with. I asked my youngest daughter why she never doubted what I was saying was wrong...she said, "because Mama, all the years you raised me, no matter how sick you were, you never complained, you never took off from work, you went to college sick and never complained; I knew when you said you throat was seared that you did not have a "stress" issue. That it was real". I was lucky I had a few people who really knew me and that I wasn't making it up. But my ENT appointments I have to say the head ENT said I was severely burned but other than that he was mum. All my doctors were. I think they didn't know what to do so they cut me lose...I studied and wept non stop until I pieced together what worked for me. I hope my story gives you some support and knowledge. One more thing, I do make sure I get a bit of probiotics and or small piece of brie cheese for good bacteria to thrive in the gut. I consider it very important for my B12 levels. And I use a B12/B vitamins dremal patch called VIE which I can't find on amazon anymore. I still avoid tomatoes and raw onions and very spicy foods but other than that I have a very normal life now and feel health even though I'm 64 and spent my whole life low D levels/low sunshine. What a silent crime this is. The science is on the books its just it hasn't been brought into preventative medicine yet. But hopefully this will change over the next 10 years. But I don't have 10 years to wait for my doctors to catch up. Elena
March 3, 2016 - 10:39pmThis Comment
Dear Elena
I am new here but have read with interest all your success with vitamin D3.
My symptoms started with a throat discomfort in May 2016 on the right side. I did not have GERD or LPR then. I started taking a PPI ( omeprazole once a day ) and combined this with Gaviscon. My symptom improved then the omeprazole stopped working. I then increased my dosage to twice a day and continuing with the Gaviscon. The PPI was prescribed by my general practitioner. Again the PPI stopped working and that was when, because of the increased dosage, I started developing GERD with burning throat, heartburn and stomach burn. It was horrible. I had my first gastroscopy in early June which diagnosed reflux and oesophagitis and a hiatal hernia. At this point I was desperate for anti reflux surgery which I saw was my magic cure. I had a repeat gastroscopy end of June which diagnosed me as having a healed oesophagitis, no hernia and a scarred lower oesophagus. An ultarsound scan of my gall bladder showed one very tiny gallstone which was not blocking any duct. I had to stop all PPI's before my first gastroscopy after which I tried another PPI and then Nexium before the second gastroscopy. An oesophageal manometry test showed that my oesophagus was functioning fine, my lower oesophageal sphincter was not defective and a 24 hour ph test showed hardly any real acid reflux or non-acid reflux. I am puzzled by all this as, especially during the 24 hour ph test, I was having a lot of symptoms -throat burning, chest pains and heartburn. I was then diagnosed with oesophageal hypersensitivity / functional heartburn / functional chest pains. I had a follow up with the surgeon who ordered all the new tests who basically wasn't a good listener but I did accept that objectively, all the tests showed that surgery was not needed in my case.
To date, my throat still burns. An ENT consultant scoped and said that my larynx looked pristine ; no sign of burning on my laryngeal mucosa. I wake up every morning with a burn which can last all day. I chewed on ginger to relieve it. Alkaline water helps it but its effects do not last long. I would like to give vitamin D3 a try but what I was hoping you would tell me is - did you take vitamin K2 as well ? I understand that for D3 to work, K2 must be taken too.
I watched my diet carefully and have done all the lifestyle changes. I take probiotics but find that occasionally, some brands give me severe chest pains. To this day, I am convinced that the first PPI had caused my reflux symptoms in the first place. I do believe I have LPR although the only symptom I have is a throat burn. The ENT consultant I saw did a throat swab and sent me the results recently which read as "significant organisms in my throat ". I have been taking a strong antibiotic prescribed by him for 4.5 days now and the burning sensation still persists with occasional mild chest pains ( which thankfully have abated somewhat from what they used to be) may have bacterium in my throat but I am certain I have LPR as well.
Please reply. I would really like to know if vitamin K2 should be taken with vitamin D3.
Look forward to hearing from you soon. My life has been horrible due to this disease.
LPRRER
September 3, 2016 - 11:38amThis Comment
Hello, I suffer from LPR and noticed your post. I'm a male @ 160lbs and will try your D3 suggestion. Ill let you know how it goes.
August 3, 2016 - 8:59amThis Comment
Elena, trank you so much for answering me. Iam so touched and moved by all the help and support it literally brings me to tears again. The last days were like hell an I could hardly eat or even drink. I feel like iam slowly fading away- loosing more an more weigth, just around 50 kilograms by now, weak and pale. Iam frightened to See myself in the mirror.
March 14, 2016 - 2:04pmIam so grateful that art least there is someone like you caring for others- in this case especially for me.
I don't want to die from this, I have just given birth to a wonderful girl and I know this sounds pathetic but I want to see her grow up.
I already started to take D3 - how long did it take you to elevate your blood levels? Did you take PPI,s and if yes, did it have a positive effect? Some people also recommend digestif enzymes so that your stomach empties earlier. Are you taking probiotics long term and if yes, can you recommend a certain brand?
Iam sorry I didnt reply earlier but I just found all the answers in my spam mail.
I cant tell you how grateful I am and how much I appreciate your answer.
This Comment
Dina how are you feeling?
I want to be clear that for myself that I think that D3 and sunshine put my LPR into a sort of "remission". The probiotics I took for on straight for a year. But probiotics did not put my LPR into remission. But I felt it gave me some benefit. My GI thought it changed the PH of my stomach acid and gave me a tiny bit of relief until I found D3 and sunshine. I also found that when D3 is low, or at least for me, so was B12. I take drops under my tongue of B12 Methyl'. On my US D score I aim for a D score of 80 ng/ml. And with B12 I aim for a B12 score of 800-1,000. I test twice a year on both of these. For myself I consider these two labs very important to know my scores. I am hoping you are better. Please let us know how you are doing.
May 20, 2016 - 12:40amThis Comment