LPR disproven; so why do I still have it?!

Posted , 27 users are following.

I've been suffering from what I believe is LPR reflux for 16 months now, and I honestly can't take another day of it. I've been through everything to try and cure it from day 1. This includes all sorts of PPIs/H2 blockers, Gaviscon Advance, 3 different diets, 3 different antidepressants, alkaline water, raising the bed, vitamin d3 (1000-5000 IU a day) and more besides. Nothing works at all, and I'm not a candidate for surgery. I've had all the tests which are expected to come back negative too; the endoscopy, barium swallow, gallbladder scan, ENT throat scope all came back clear. I also have no new allergies, and my vitamin D3 levels are high enough to satisfy even the "new" research. Personally, I think the whole D3 thing is a hoax, but I digress.

I've also have a number of "Peptest" spit tests throughout the year. In total I have collected 18 samples, and only a single one has come back positive. It was the first one I ever collected, and it was only just in the "low" bracket of pepsin detected. That's just 1 positive sample in 17 though, and I've collected samples right after serious symptoms, or even when I thought I burped up vomit. RDBiomed, the ones behind the test, are questionning my self-diagnosis of LPR, but still my symptoms continue. They include:

- Constant Post-Nasal Drip. It doesn't wake me up in the night but the moment I wake up it affects me all day.

- Throat clearing, usually a result of the above.

- A burning throat sensation. There's no pattern with food, it has even happened when I drink alkaline water.

- Sinus headaches, fatigue and ear pressure.

- Nausea and constant burping.

HOW CAN THIS NOT BE LPR?! I have serious anxiety about my health, and the thought of having LPR scares me to death, to the point I have sought assisted "self-harm" to end my suffering. I refuse to live a full life with a chronic, painful, incurable illness, because it's the one thing I've ever been afraid of having. I'm just not strong enough to cope with it. In my desperation, I keep trying to prove if stress can cause all my symptoms. It does not, cannot and will not ever be the cause. I've been told to "stop deluding myself into thinking I'll ever get better" by some people, and told it's "all in my head" by others. Nobody truly believes I'm suffering at all.

Who should I believe? Will I ever recover? What kind of conditions are similar to LPR? Please help me. I want my life back.

A last, important note. I recently stopped taking Mirtazapine after hearing they have anti-acid effects. I refuse to be on drugs for life; I want to cure my illness, not mask it. Since stopping the Mirtazapine my Post Nasal Drip has significantly worsened. I'm not sure if the two are linked, but I've made sure to take another set of Peptest samples to check for LPR, and they're still all negative.

1 like, 61 replies

Report

61 Replies

Prev Next
  • Posted

    Hey Daxter, sorry to read this. I too have lpr.i have throat inflammation, mouth inflammation, a positive barium swallow and just waiting for a ph test.  I also have oesophagitis and Barretts, and still I'm being told its all in my head. Some docs you just can't win with. Anyhow, I know this might be way of base but have you heard of a condition called irritable larynx? Kind of a bit like ibs of the throat in that you get the pain without damage. Stress does affect things as it makes your mucosa more sensitive, but I know this is a treatable condition. May be worth looking into?

    I have HA too and like you dread being left with this condition. Especially now it's getting out of control despite all the lifestyle changes and all of the tablets. Fingers crossed you get some answers. 

    Report Reply
  • Posted

    Hi Daxter

    Dude I am at the end of my tether.  Been through the exact same as you and just don't know what the hell to do.  I need to beat this with someone so message me for a chat.  It has really got to me.  In my thirties 12 stone, keep fit, gym.  Sing in a band (or did do) and this has pretty much ruined my life to date.  Frightened to go near alcohol as well as after having a drink or 2 it seems to start bringing on the harder to breathe symptoms.  At the moment I have spent the last 3 weeks clearing my throat, and waking up in the morning with gas and pressure in upper abdomen which I then belch up after sitting up.  It is a nightmare.  Get in touch

    Report Reply
    • Posted

      Hi Tyler

      I understand totally. I too have the same horrid symptoms. Suffered horrendously with the acid fumes, breathing issues etc. Had my Nissen done a little while ago. No acid reflux now  but the silent LPR is worse. Now I feel like my throat is closing up. Nothing else left for me to do now. Ifeel like giving up

      Report Reply
    • Posted

      Hey Moonbuggy

      Listen don't give up.  I know exactly how you feel.  I had some toast last night then drunk some water and then stomach just so bloated and harder to breathe type feeling.  Just what you need when going to bed!  I am off to the docs Monday and also doing the peptest which arrives today in the post.  Part of me thinks I have this LPR thing and part of me is unsure.  The syptoms that affect me the most is the harder to breathe type feeling and the mucus/throat clearing.  If I can get rid of these then my life would return to feeling normal.  We can't give up.  I think stress and constantly thinking about it and getting frustrated accentuates the problem.  If you want to speak to me anytime that's cool, as maybe we can help each other mentally.  We may not even have the same thing, but all the symptoms point in the same direction.  If you have no reflux now, how can you still have lpr syptoms?  What age and build are you and do you get stressed?  To reassure the throat closing bit get a peak flow. Blow in it.  I always blow 560 to 600 which is normal for 180cm male.  If you blow normal then your throat cannot be closing up.

      Report Reply
    • Posted

      Hi Tyler

      I am 5' 5'' and weigh 72 kgs. After the Nissen all the acid reflux went. As I still felt this watery feeling in the back of my throat I had another Peptest done just for my sanity. It was 500 (very high being 250). I had the NF done as PPI's don;t work on LPR. LPR is to do with the UES not working (the LES is th usual one that the NF strengthens). I am at a loss myself how the one type of reflux has stopped and not the other. Haven;t seem my surgeon post op yet so will ask then.

      I was reading about the Shaker exercise for strengthening the UES. May be worth a try.

      I have had this horrid affliction for 2 years and feel like there is not much more to try. I have done some research about the Vagus nerve contolling the Pepsin/Gastrin production so maybe the Elavil idea may make sense as some think this is to do with overactive nerves.

      I've been to A & E a couple of times with the breathing stuff but as all x rays/etc are always OK = they just look at you as though you are making it up and send you on your way. Lots of other things can cause breathing issues and PND like food allergies. I think my problem is - I have had 3 gastro surgeries in the last 12 months and it is all getting me down now.

      Report Reply
  • Posted

    I know you have done several things but I was just diagnosed with this and when I took 1 prilosec it didnt help . But when I took 2 at one time it did you will see a big difference. If prilosec doesnt work there are several out there just remember to take two at a time some people I heard of take 3 at a time. Just work with it give it a try. It was driving me crazy to. It will take a little bit of time because your body will need to repair itself because it does damage from the acid (pepsin) coming up . If this is not treated it can result into cancer of your esophagus  but it is repairable if you catch it early . I hope this helps.   
    Report Reply
    • Posted

      This is for anyone with reflux, lpr.  Start drinking carrot apple and celery juice, sometimes some pineapple.  I remembered at the weekend how I did this a year ago and cut down on meat at the same time and voila 2 weeks later I was all good.  Then wot I didn't do was keep on with it.  It is true that ppis are not the answer.  They treat the symptoms.  Also it creates an anxiety due to constantly not feeling well, breathless, bloated, mucus etc.  The body can heal itself if you help it.  It is about taking control and accepting it and then dealing with it a friendly way.  The more you fight it the bigger it gets.   There is a reason.  It will be either diet, stress, obese etc etc.  It is about helping yourself and being mentally super strong.  I woke this morning with huge amounts of deep belching, and breathing was not relaxed at all, like a disconnect.  Like air goes into nose mouth but you don't feel that lovely relaxed stomach breathing.  I will update my progress with diet, and I would love to help others take their life back so please feel free to ask me anything! Check out natural cure lot.  I read it sat morning at 5am! That is what reminded the power of diet and juice.  Thanks for commenting Patricia.
      Report Reply
    • Posted

      I make a juice with carrots, celery, fennel, sometimes spinach or a little bit of cabbage. Apples and pineapple are too acidic for me.
      Report Reply
    • Posted

      Hi Ines that's great.  Its about finding the right combo I guess.  And how are you?  When I juiced I was worse before I was better.
      Report Reply
    • Posted

      Hi Tyler,

      My problem is gastritis, not so much LPR even though before I took the PPI (dexilant 60 mg) I started having some LPR as well. I have been feeling good for a week now. I am looking forwards to decreasing slowly the PPI in the next three months and then I hope I can feel well without it.

      At first the juices did not sit so well with my stomach, it did not really hurt but it did not feel so good. But now I could not do without it. I went away for 2 weeks and one of the things I missed the most was my vegetables juice. One of the reasons is probably that I avoid eating fibers at the moment as they are irritating to the stomach so the juice is my only intake or raw vegetables.

      Report Reply
    • Posted

      I juice with carrots, celery, kale, spinach and melons and sometimes turn it into a smoothie with some bananas and ginger.  I've suffered LPR symptoms with no diagnosis for over 2 years now - it's  always there, only time it doesn't give me issues is when I'm sleeping.  Having said that a low acid dietl, juicing and taking DGL and probiotics and Vit D has made a significant difference, the constant throat clearing isn't anywhere near as bad as it used to be.  My main symptoms now are too much phlegm all day long and a tightness in esophagus but I'm guessing some damage to be expected after 2 years of constant reflux.  I used to have major breathing problems and a severe cough as well as constant throat clearing which have reduced greatly in last couple months.  I live in hope it will eventually just go away as Drs have been of no help and don't even recognise LPR as a condition at my hospital - they asked me what LPR was when I suggested that may be what I have and rolled their eyes at me and said it's all in my head!
      Report Reply
    • Posted

      Sounds promising purdie.  I guarantee (I'm not s Dr by the way) you still have some kind of underlying anxiety. And still subconsciously have it in your head. Its natural and its affected me like that.  People do need to take responsibility though and not enough people are.  If diet is bad change it, if overweight lose weight(unless from a medical condition), if anxious learn to accept it and relax and fix it.  Some people think a Dr will just sort it with a pill.  Getting support from people family is a big help.
      Report Reply
    • Posted

      Tyler,

      The first time I took the PPI I stopped cold turkey and the pain came back. Now I learned my lesson and I will take them another month to be sure I am healed then stop slowly over two months.

      Report Reply
    • Posted

      Hi Purdie,

      Your smoothie sounds great but I am pretty sure ginger is irritating though. I keep kale and cabbage for special occasions and always in small quantities because of their effect on the thyroid.

      Report Reply
    • Posted

      Everyone is different I guess.  I find ginger soothes the digestion.  I don't have too much ginger but it was recommended by the reflux diet (Dr Koufman).  Never had any issues with my thryoid but eat kale and spring greens as they are high alkaline.
      Report Reply
    • Posted

      I know the book from Dr Koufman very well. But having gastritis (resolving now), I could experience first hand what is irritating or not directly. Anything irritating would cause me immediate pain and ginger did. Also I found a study about spices that classify the spices into mild, moderately and strongly irritating. Ginger was moderately irritating.

      Anyway I am grateful to Dr Koufman but I disagree with her about ginger, manukka honey (ph level 4 and tea tree oil in it is irritating), dairy (causes the stomach to produce excess acid), and salt (very irritating to the stomach, proved scientifically to cause damage to the stomach lining in high doses).

      About kale, all members of the cabbage family interfere with the thyroid hormons and can cause problems if taken regularly. There was an article about this recently in the New York Times health section. It is too bad as they are also very good to help the stomach lining to repair.

      Report Reply
    • Posted

      It don't think it was an anxiety thing for me that brought it on.  I had a stress free, anxiety free lifestyle when I first came down with this after having a bad sinus infection for 2 weeks and off work it left me with LPR symptoms.  Yes, now that I have it stress can make it worse and having a permanent lump feeling in the throat does cause some anxiety but having fun doesn't make it go away either which is what the Drs seem to think will happen.  I didn't cope well with it at all for the 1st 18 months as Drs were unhelpful, meds weren't helping and I had to give up most of the activities I love as walking and cycling became difficult due to breathing issues.  I've now changed my lifestyle, keep a healhier diet, try to get out for shorter lower level walks and have taken up low impact exercise like pilates and aquafit but even when doing all these things that I enjoy the lump and constant phlegm thing is still there and breathing can become difficult if I over exercise.  I've even given up alcohol for the last couple months and it's a little better than it was but no sign of it going away completely any time soon.  So yes I agree anxiety can make it worse but it's difficult not to feel a little anxious when you've had the condition so long, have tried so many things, given up a lot of the things you love and lost friends because you no longer can go to the pub as water is only option available to drink.  I am now addressing my weight too as when I first got this condition I found eating was the only thing that gave me relief (the lump feeling went away when eating) and I put on loads of weight as I was overeating and not gettng the exercise I used to enjoy.  I realise now that eating the wrong things has probably made it worse and am making steps to do something about this.  I feel more positive about the future but don't feel this is going to go away any time soon.
      Report Reply
    • Posted

      I appreciate everyone is different and they say no one knows there own body better than yourself.  Ginger is not documented anywhere to be bad for you.  If you look hard enough you can find a negative in anything.  From reading your post I still believe you have underlying issues. You were also drinking.  Alcohol will upset reflux big time.  It can be beaten.  I don't mean you were drinking excessively, but you were still drinking and overeating.  Look it has effected me with all the usual things, and I am 180 79kg athletic.  But noticed all the posts are the same including what I wrote, saying the same things.  Its making lot to be like cancer and something bigger.  It needs to be treated differently, laughed off even, and not I hope I won't have this forever, or is there a cure.  If you have the belief and confidence in who you are as a person, it can be beaten.  End of story.  People get beaten by themselves. I absolutely guarantee you that if you felt great mentally every single day lpr ,would hardly exist. Its diet and stress. 90percent of the time.  People just won't change or admit their shortcomings. Until they do all you will have is hope. I am not an expert, or anything like, just an English boy who will embrace it and move forward by helping myself. It will go away and say to yourself it will.
      Report Reply
    • Posted

      Hi Tyler,

      I must disagree. Even though I can believe ginger has some beneficial aspects for some people and maybe it helps digestion somehow, I have read a study of spices and their effect on the stomach lining done by a doctor and ginger was amongst the other spices irritating for the stomach lining. I think it is an urban myth that ginger is beneficial in case of gastritis for sure (I tried it many times and it definitely hurts like other spices), and probably for all problems related to reflux.

      Report Reply
    • Posted

      If you google ginger 99per cent are it helps, so why focus on the one report that you found which says otherwise.  On livestrong they say too much can give you problems, but you can say that with pretty much anything.  If it doesn't agree with you thats ok.  Everyone is different.  But the overwhelming consensus is ginger is generally good.  Could you possibly be wrong??
      Report Reply
    • Posted

      Ginger might be good for some people but having gastritis my stomach is hypersensitive and I can feel it is irritating. Anybody can feel the spicyness of ginger, also I talked to many people who have gastritis on forums for gastritis and many can't tolerate ginger. So I am pretty sure that ginger is irritating for the stomach lining, therefore not good for gastritis and that there is misinformation on that topic like on many others on the internet. If some people try to protect their stomach lining to avoid acid reflux or LPR, my guess is that ginger is not good for them. But we can agree to disagree, I just want to share the result of my research, I researched this and experimented a lot because I love ginger. If other people feel that ginger irritates them, but eat it anyway because other say it is good, maybe they will read what I say and listen to their feelings. After all the most important thing for recovery is to keep doing what feels good and avoid what hurts. It worked pretty well for me, after 9 months of pain, I have been pain free for one week now.
      Report Reply
    • Posted

      If you read about ginger on webmd, which is usually a good reference, it says " Some people can have mild side effects including heartburn, diarrhea, and general stomach discomfort. When ginger is applied to the skin, it may cause irritation."

      Why would you think that somethings that causes irritation to the skin does not do anything to the stomach lining?

      Report Reply
    • Posted

      Hi Tyler,

      I ahve only had symptoms for 3 months and it feels like 3 years. I am 5ft 3 and weighted 8 stone, I ate heathily and ran, skied, surfed etc. I did have a huge amount of stress in my life the last year and a half. Then one day 3 months ago I felt like I had picked up a cold/stomach bug. That went away, but ever since I have been having symptems like yours. I cannot exercise anymore as I get really out of breath, I get burning on my tongue, throat, sometimes it feels like it is going up my nose. I have had sore ears. I get post nasal drip and a lot of mucous in my throat. It also seems to effect my muscles around the diaphram and between my shoulder blades. I have had an endoscopy which showed mild damage to the oesphagus, my manometry and 48 hr bravo test were normal. I was on PPI,s but they made me feel worse, and gaviscon seems to effect my breathing. I now weight 7 stone as I struggle to know what to eat and I am so stressed my DR is putting me on anti depressants. I feel so scared and confused, and I dont have any real support, my husband is getting fed up with me and my GP is no help. Some days I feel like my life is over. You seem like a very positive person and I would really welcome any helpful suggestions. Hope to here from you soon.

      Report Reply
    • Posted

      Hey Karen, first off your husband should be there for you no matter what, and.you need support from him to help you.  I sympathise as I have the same crappy weird symptoms that really affect quality of life.  I actually feel OK when haven't eaten.  Dr said to me not to exercise and see if feel better, but exercise is part of my life.  So we seem to have the same thing but we need to beat it as anything is possible.  I feel like you feel.  Like you just want to be free and you just feel trapped.  Start juicing with carrot apple celery, once a day or twice if money no problem for you.  Try and take 20mins out in evening to sit in peace and quiet on your own and close your eyes and think about nothing.  This is harder than you think.  Any thoughts in your head just let them come and go peacefully, just sit there and breathe in nose out mouth nice and smoothly.  I reckon it is stress and underlying emotions trigger this reflux.  Then food just doesn't digest properly.  I guarantee you/we can get past this somehow.  How old are you? Do you get symptoms when you have a drink?  Does the mucus feel like its lying in throat chest area? How are you at night?
      Report Reply
    • Posted

      Hi Tyler,

      Sorry I didnt reply sooner. I got really depressed and my Dr has put me one anti depressants. I am finding this so hard to cope with. I think its the not knowing what is wrong that is the worst. If you knew what you had and what you had to do to deal with it it would be a lot easier. I just dont know what to eat and I now weigth under 7 stone and cant seem to put on any weight. I know the depression will not help this but I just feel like there is no help out there. I had blood tests done yesterday and I have done another Pepsin saliva test. But I thinkk these will all come back normal. I know I probably need to accept that I might have this for the rest of my life, but that is soooooo difficult. I know I need to sort out my diet, and eating alkaline foods definitely helps, but there are so few calories in it, and I cant afford to loose anymore weight. What do you eat, and what do you do if you go on holiday. We usually go skiing once a year and surfing, and right now I hardly have the energy to get off the sofa. I am hoping once the anti depressants kick in I will feel more like sorting things out. My main symptoms are a constant burning/tickling feeling in my lungs, burning tongue, mucus at the back of my throat all day, but worse in the morning, a burning pain between my shoulder blades, and if I exercise too much I get a really tight uncomfortable feeling between my sternum and belly button and my diaphragm gets really tight. i also sem to belch a lot after meals which I never used to. All these symptoms came on almost instantly, in fact I can remember the exact day. I dont sleep well either, I wake up after 4 hours like clock work, really really strange, and I am so tired. Have you read the reports on vagus nerve damage and how it can cause symptoms of LPR? Sorry to go on so much, just finding it all very hard.

      Report Reply
    • Posted

      There are some of us Tyler whose body cannot heal itself. A faulty sphincter is a mechanical problem. When one sleeps there is a muscle group that carries on working automatically. When one muscle doesn't respond to this medication or diet can't make it work. For those people whose LES doesn't close at night the only thing they can do is reduce the acidity of the stomach contents so that when they enter the oesophagus at nighttime, they oesophagus isn't burned. This new Lynx procedure holds great promise for nocturnal reflux sufferers. However, if you have had a Nissen fundoplication like I have, it won't work so we are stuck with the PPIs whether we like it or not. They're not all bad. I've been taking them for nearly 20 years and they've been a life-saver.
      Report Reply
    • Posted

      Hi Tyler, this is in response to an old post you posted at least a year ago. I have lpr. I'm a personal trainer & for the past 2 years the lpr makes where I work out less & less. I'm almost to the point of not exercising at all. Has your lpr improved? Are you able to exercise now? I also have gastroparesis.

      Report Reply
    • Posted

      The skin is different than stomach lining. Ginger helps bring me relief from my lpr or whatever it is I have.
      Report Reply
    • Posted

      Tyler,

      ​       When my LPR started it seemed that apples and pineapples were a huge trigger I think because they are so acidic.  Do you think I should try making the drink you suggested?  Do you think it might make me worse?  Thanks, CW

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up