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
Dina
I am a nutrition grad student suffering from LPR that was triggered by stress. I have read most of the posts on here and definitely agree with some key points being made. Initially, my LPR came in waves of pain in my gut, neck, ears and chest. Then came the throat burn. Only people like us know what it's like to just sit in agony for hours. I lost 15lbs in a few weeks and eventually got sick enough to get comitted. Anyways, I have been with it for about six months, doing research and using what I know with diet to combat the issue. There are three things I know for a fact:
PPIs do not cure LPR. They may help reduce the pH of the reflux but will never affect the ESO sphincter.
Everyone suffers from different foods. I can eat peanut butter all day but blueberries rock my throat instantly. You have to keep a food journal and take the time to test each food. The biggest help to me was stopping dairy and processed grains. Many people believe that LPR is caused by SIBO and carbs. This has some science to back it but my research finds that it only helps some people who suffer from burping LPR and bloating.
Finally, probiotics and digestive enzymes are again only helpful to some. People will argue for them til doomsday but there is little peer reviewed research that shows these supplements do anything. Having said that, Vit D3 and magnesium has a lot of good science to back it. Your ESO sphincter is controlled by the ANS autonomic nervous system. This explains why great stressors can alter the function of it. Vit d strengthens all tissues and magnesium helps regulate brain function.
I refused to do surgery or take PPI meds for these reasons. Ppis lead to nutrient deficiencies, hip fracture, and pulmonary issues and fundiplication should only be done when no other option is present. It's dangerous because your vagus nerve can be damaged and even skilled surgeons can mess it up, leading to all sorts of stomach issues.
With Vit D, dairy free eating and omitting other foods like citric acid and alcohol and coffee and chocolate, and practicing mental strength like yoga or self willpower activity, I have brought my symptoms from torture to moderate annoyance. The gut takes up to a year to heal so you have to stay with it. Also, I am currently researching Celiac's and LPR and they love going hand in hand. Even if you test negative, you can still be intolerant to gluten- like my mother. I will be trying gluten and dairy free next month to record results.
I hope this all helps. Check out the research about LPR and SIBO. I don't believe all of it but many people have found solace in low carb diets. By eating right, sleeping well, and doing mild exercise I think most people can improve their symptoms
Karl K
April 13, 2016 - 12:23amThis Comment
Have you tried alkaline water? Did that help?
April 26, 2016 - 12:07pmThis Comment
sorry for all my typos on the last reply. Elena
March 16, 2016 - 8:53pmPS: feel better soon.
This Comment
Hi I have diagnosed myself with LPR after suffering for a few months. I am 33 years old. I think I have been low on vitamin levels for some time and I think it got bad after I contracted C Diff from my boyfriend and was nursing my child which caused me to have even lower vitamin levels. Also I started working 40 hrs a week for the first time in my life and I used to go outside a lot during the summer and the past few months I haven't gone outside once. I had the globulus sensation a few times and it started scaring me a lot so I started doing research. Thanks for posting all these stories, they have been the only thing helping me through this. I have not gone to a Dr yet because I got upset with them when I had C Diff I checked into the ER twice and the doctors refused to treat me they just looked at me with a blank stare and gave me nausea medicine and told me to come back in a few weeks if I didn't feel better. I was upset and had to do research on my own to find ways to treat it, oregano oil and probiotics worked for me but I think the oregano oil also hurt my esophagus valves along with stress from my new full time job, being a single mom for 2 years, then getting married and having c diff, alsong with defficiency in vitamin d along with others from nursing my child. Anyways, I lost hope in Drs because they treated me so badly and now I feel like Im dying with LPR. I just bought vitamin D3 and B12 yesterday and I was suprised that I did feel much better after just taking a bit. I am going to continue doing that and my alkaline diet. I also take marshmellow root. I pray to God that I can find a way to heal as I do not want to live with this for the rest of my life or die from this. Thank you everyone for posting information about this horrible disease, it helps me to not feel alone.
August 26, 2015 - 3:45pmThis Comment
Ah yes, I received the same type of treatment...blank stare from all the 4 teams of doctors I had. Even though all ENTs confirmed severe burns in the throat, even though with time I had a fundoplication surgery (which did nothing to help my situation; in fact I got 10x worse after fundoplication surgery; I suspect I know why: all the medical periodical for LPR doesn't help because LPR is caused by a lifetime of low D levels in my humble opinion....which is dangerous, as low D levels since utero (which most of us have in modern life) causes permanent damage to all the system of our body). So the fundo surgery didn't work for me becasue LPR is not a illness that surgery fixes. It takes strengthening all the muscles of the body and only hormone D3 and sunshine worked for me, though how long it works for me is still a big question mark for me. I had to figure out what was wrong with me with no science background. I'm so grateful for the internet and the web. I pieced it together through a lot of weeping through serious pain 24/7. I'm so angry that D and sunshine is not part of preventative health care. I'm so angry that D and B12 levels are not part of our annual check ups from the moment our mothers carry us. I'm so angry for all the populations of the planet that suffer with a thousand different illnesses all due to one root cause: low sunshine since utero and low D levels. It goes beyond the pale of decency that there isn't wide spread education on this. But this is my personal theory and I have never seen anything in the periodicals that shows LPR is caused by low D/low sunshine. It seems LPR patients are treated with the most despicable attitude by doctors. Mine blamed it on "some unknown stress". What a disgraceful thing to say to a patient. In so many words the doctors are indirectly blaming the patient...that we can control it somehow. What a horrible thing to be put through. I use to think during those long 2 1/2 years in pain that it was one of the loneliest anatomical illnesses as no one can see it and the doctors treat you like your doing it. It literally is like being in the twilight zone. www.grassrootshealth.net But Vitamin D doctors are trying to turn this around.
March 16, 2016 - 9:09pmElena
This Comment
Hi Elena. Thank you for sharing your story. I have been dealing with this for a few months now first they said it was gerd. They gave me ppi's and then they said I had hpylori. I was given 3 different antibiotics I couldn't continue because I got to sick by 8th day and was hospitalized I was having breathing issues and swallowing. All tests showed nothing. As like everyone else they think it was stress and I am creating this was then released after a week and put on Xanax. Once I was out and home I decided to research it myself. I have been taking vitamin D3 now. They had told me I was low last year and it makes sense I am never outside. I had asked the dr about being low on supplements when I went got my follow up after the hospital stay and she said no that's not an issue. Just eat s well balanced diet. They don't care. Well it's been three weeks now and I have bed. On a strict diet. No carbs no sugars. I still feel the dryness in my tongue. Not as bad as it was before thank god. But I was wondering if the dry tongue ever goes away. ? And if so. In how long ?
May 28, 2016 - 8:45amThis Comment
Have noticed several people complain about onions and garlic giving trouble. From what I have read onions, garlic and peppers have properties that relax the sphincters in the esophagus . That would probably be why they are giving issues.
March 8, 2015 - 7:23pmThis Comment
Great blog (thanks).
Ive had the LPR problem (mucus and dry throat/mouth at night for about five months now) and I'm sure for me its mainly stress related.
I do practice TM meditation, which is great -and it certainly helps to keep my acid levels down, and hence my symptoms. But I'm in the process of moving house so its an extra stressful time just now, so I really have to work at eating the right things and keeping in balance via exercise/walks etc.
Ive found Coco Vita coconut juice is very good as an anti acid (I take a small cupfull am and pm -no more). As is Pukka aloe vera juice is very good too. Its expensive but you only take a few tablespoons full a day. DGL licorice is supposed to be good for keeping acid in check but I havent ried it yet.
One thing: avoid yoghurt at all cost as its very acidic, yet many people with LPR think its fine. You can whisk 4 tablespoons of live yoghurt into a glass of water to produce delicious cooling Lassi (the drink you get in Indian restaurants), its tasty, much less acidic, plus its probiotic and good for the tum.
Dont forget your posture. Wear loose fitting clothes, underwear, belts etc. Avoid bending at the waist (bend knees instead), and avoid sitting hunched over, keep a straight back.
Avoid worrying yourself on the internet. Research by all means but avoid jumping to conclusions. LPR is a very common problem which basically forces you to adopt a healthier more balanced lifestyle ..so it can be a positive thing in that respect.
Best wishes.
...hold on in there ...and you'll be just fine.
PS: You may want to change the blog font style (and perhaps size) as its quite hard to read and not too attractive a font.
April 6, 2013 - 1:49pmThis Comment
Hi! I was just recently diagnosed with LPR and am making major dietary adjustments. Are all yogurts acidic? Are Greek yogurts ok? I have given up so many foods and thought this was one I could continue!
Thank you!
PJ
January 15, 2014 - 7:03amThis Comment
So happy to know this message board has helped some people with LPR. My latest update is that I got my hormone D levels to 90...I wanted to get it to the highest end of D levels. I have dropped my D intake to 6,000 IU a day and from mid-April to mid Sept I will drop it to 5,000 IU and get in the sun at high noon for 10-15 minutes a day. I feel great! Still have minor wisps of LPR but there are times that it disappears completely. What a quality of life saver Vitamin D hormone is! I thank my lucky stars I never gave up and did my own research. What has become apparent to me by anedotal examples is that in my opinion and personal observation, many of the illness we all suffer from are caused by low D. They present differently in people, but most illness are direcly linked back to low D levels. My mother-in-law was told in front of her 3 grown sons by the Dr, "why did you come into the ER room?! Your dying. There is nothing we can do for you. Die at home." My husband and his brothers were in shock at the advise the Dr gave. They asked the sons to sign off on any further care for her. When I found out about it, I thought, if D helped me, could it help my mother-in-law? I told my husband, on a hunch, ask the Dr to take your mother off as many medications as possible and put her on 5,000 IU of D a day. My mother-in-law was so weak she couldn't get up or hold a spoon or cup to drink. She was 87 at that time She was released after two weeks to go home and die. To our surprise my mother-in-law has slowly gotten better. We are all stunned in the family. Next, my brother-in-law was visiting for Christmas and stayed a few days over night. When he got up the 1st morning of his stay we asked him how he slept. He didn't want to complain but said that his sleeping pills didn't work and he was up awake most of the night. That caught my attention. I wondered if D was his silent problem. I thought it was worth pursuing it a bit more. So I asked him, "how long have you been taking sleeping pills?" He said 10 years. I asked him how else did he feel? He said he couldn't do more than 1 minute on the treadmill and he felt so tired and no energy. I said to him, "Mike, would you do something on a hunch? Would you call your Dr as soon as you get home and don't tell him why, just ask to have a D test waiting for you at the lab. After you take you lab take start taking 5,000 IU of D a day." To my surprise my brother-in-law did it! He called me 3 days after he got home and asked to speak to me. He said, "are you a Dr?!!!!" I said, what's up? He said, I did what you recommended and got a D test. My level came back 11! And my Dr flipped out and has put me on magadoses of D!" I was struck that my hunch was correct. There are other examples of this with my friends and mother I could talk about but I now suspect low D is central to many many of the full range of illnesses we all suffer from. I'm convinced that levels of D should be tested for life, from when we are in utero until the day we die. It is central to good quality of health and life.
Anonymous/ewright
March 13, 2013 - 10:55amThis Comment