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

Next
  • Posted

    I can relate to what you are saying as had similar problem for nearly 2 years now and like you some people say it's all in my head (to which I reply no it's all in my neck) and they say if I stop thinking about it it will go away. I have had baclofen and diazepam from GPs who were sure it was caused by anxiety. Nothing helped the throat. Others tell me I need to learn to live with it but this is extremely difficult when you are suffering pain and throat tightess all the time.

    What diets have you been on and for how long? I am on Dr Koufman's reflux drop the acid diet. The first 2 weeks I felt no significant difference so stuck with it for a month before going to maintenance. I'm now 6 weeks in and still have all the symptoms but they just feel slightly more manageable now. I have heard from others on another posting on this site that it can take 6 months to a year before significant changes are felt on the diet. My post nasal drip has signficantly reduced using sinus rinses twice a day, the severe breathing problems with throat spasms which twice resulted in me going to A&E seem to have calmed down a bit but I still have the throat phegm, constant swallowing, and extremely tight feeling and globus in my neck.

    I have gotten knowwhere with GPs, ENT or GI departments. Endoscopies showed mild inflammation but I was told there was nothing more they could do. Meds haven't helped, some have made the problem much worse. I accept now that this will probably be a life long condition but it's beginning to feel like there is a small improvement. The first month on the diet was extremely difficult, I felt worse before I felt slightly better.

    I also found that the first 1.5 years it seriously affected my health and caused depression as the things I enjoy in life (mainly hill walking), I could do no more. Even a short flat walk had me gasping for breathe so I gave up on exercise and ate more as eating is the only thing that seems to help. As a result I put on lots of weight which I've now been advised to lose as being overweight makes reflux worse.

    I am now trying to get back to some kind of life. I have had a lot of time off work. Thankfully my Manager is understanding but it won't be accepted indefinately. I have taken up swimming, pilates and tai chi, all low impact exercises which also seem to help a little with my breathing and take my mind off the pain and discomfort for a short while. I also find the steam room helps after a swim.

    Other things that help make it manageable are chewing on soda gum, sucking manuka honey lozenges and taking 2 drinks of wheatgrass a day along with my alkaline water. I continue using alkaline water not only to drink but to gargle and to spray around my airways. Gaviscon Advance helps a little but not much. DGL Liquorice is supposedly good for LPR but I haven't had much benefit from it.

    There appears to be no quick fix but I live in hope that things will become easier.

    I didn't get the peptest as struggle to get the saliva up to take a sample so felt it may end up being negative anyway but going by my symptoms it definately feels like LPR despite having had no diagnosis.

    Report Reply
    • Posted

      If all the tests are showing clear then it could be muscular. Have they done a pressure test or tried you on metacolpromide or domperidome? I know you don't want to go on life-long medication but judging by your post you're in a bad way. I hate the thought of being on omeprazole for the rest of my life (I've already been on it 20 years) but my quality of life is sooooo much better when taking it. Without it I am in agony. My lower oesophageal sphincter relaxes when I'm asleep. Even an operation didn't cure it. On my first endoscopy it showed 50% of my oesophagus was eroded. I hated the thought of taking drugs endlessly so I tried all sorts of alternatives with diets and suppliments all to no avail. Now I'm used to the idea of taking the drugs. If you do find something that works for you then stick with it. Surely popping a pill a day is better than self-harming. I wish you luck in finding the cure.
      Report Reply
    • Posted

      Hi Purdie and Daxter, not sure if you're still around as you posted 4 years ago and I'm a newbie, but maybe others interested too.  I was recently diagnosed with LPR - from symptoms and history only, no tests - by a respiratory physician in Sydney.  Thought I'd mention that as you don't include respiratory in your drs seen list, Purdie? 

      To me it was a huge shock and surreal as I'd never had reflux symptoms or so I thought.  It was the chronic coughing (lifelong) and throat clearing - recently exacerbated by a series of viruses and infections - that led to the diagnosis, around ten weeks ago, and I've been researching and trying to get my head around it since

      then.  Happy to supply his details if you're interested, as it's a particular area of interest of his, as it turns out. 

      Which made me pooh-pooh it initially, but since I've come to understand it.  Taking ppi's but also getting stuck

      into lifestyle modifications in a big way.  My son got me to drink some bicarb water and it helps - seems to

      create a barrier type coating effect.

      Thanks all and appreciate any input greatly.

      Report Reply
  • Posted

    It sounds like you are having a hard time with your symptoms. Please remember that if things are bad now, they are also changing all the time and the future has better days in store for you.

    If your symptoms are not LPR, they could be allergies. Some allergies are not detected by blood tests but necessitate other tests to be detected. Maybe a good allergologist could help you?

    If it is LPR, the low-acid diet takes time to be effective, 2-3 months from what I read from other people experience. How long and which diet did you try?

    Even if stress is not the cause, it might be good to talk to somebody to get some support to go through this and discuss what to do.

    Report Reply
  • Posted

    I've been on the Koufman diet too, along with the "fast tract" and a gluten/dairy-free diet. No good whatsoever, and yet I continue to stay on the Koufman diet in my desperation. Again since I'm getting symptoms typical of LPR whether I'm on diets or not, I'd expect reflux to be detected in my throat, but apparantly not. I just really wonder why Mirtazapine would have the greatest effect on me when all-powerful diets, PPIs and H2 Blockers would fail.
    Report Reply
  • Posted

    Daxter

    You have my sympathies completely (Please read my first post from last week) My symptoms are exactly the same as yours. I have suffered for nearly 2 years and feel like I am getting worse. My doctors are fed up with me, (and I think my consultant is also). I get told my symptoms are not very specific so no surgery. No one seems to understand how much this affects our lives. It's a bit weird that we all have the same symptoms even though we are told "it's in our heads". Mine got worse after having surgery last year. Try looking up "irritated vagus nerve" as my Dr thinks it could be some nerve problems. This nerve controls a lot of things in your body (breathing, heart etc). He has prescribed Elavil (amitriptyline) which I think Jamie Koufman mentions somewhere. We need to all keep plodding on and try and help each other by posting any postives

    Hugs to you all

    Report Reply
  • Posted

    Hi Daxter

    Sorry to read about your health issues, I have also been suffering from the symptoms you mentioned for quite some time now without any relief. Done every test & seen every doctor with loads of treatments including LPR but still no luck.

    I also thought that it might be caused by stress, how did you manage to figure out this cannot be the cause? My work is quite stressful and do a lot speaking during the day that does not help either.

    Report Reply
  • Posted

    Daxter

    I can really sympathise - I can tick off all the things you have tried & yup - no effect. The ENT said my throat was a little swollen and she asked if I had digestive problems of any sort. I told her I had been diagnosed with gastroparesis (slow emptying of the stomach) 4 years ago. She said that means I must have LPR and prescribed PPI's. I did not take them because further research indicated that PPI's should never be given to people with gastroparesis as it will aggravate it. Back to the gastroenterologist - who shrugged his shoulders and said I needed to decide which was the lesser of the 2 evils. I was about to walk out but I said I had lost too much weight and am unable to put it back on again. This made him decide to do another gastroscopy - all clear - no oesophagitis, no longer signs of gastroparesis, the UES and LES looked good, said my stomach was as healthy looking as he has ever seen. I said what about the symptoms and he said ignore them. I take no medication other than some vitamins. (As I do stress relatively easily, I take vitamin B1 in quite big doses - wonderful for anxiety) Things that do seem to aggravate the throat mucus are dairy, especially milk, chocolate, alcohol, sugar and definitely high fibre carbohydrates. If I stick to the Fast Tract diet, my symptoms definitely improve. I find it hard to do because a lot of the food listed as being "good" on the diet, I regard as "junk food" eg white bread. However there is no doubt about it - white English muffins cause no symptoms whilst wholemeal muffins have an almost immediate negative effect. If I eat mostly protein, I definitely get better. I know a lot of LPR sufferers on other forums have found that this diet has definitely shown more promise than the Koufman low acid one.

    Re PPI's and other medications, if you have read the theory behind the fast tract diet, you will know it is based on the assumption that the reflux is cause by fermentation of undigested carbohydrates. If this is so, then PPI's would only make it worse as less acid will aggravate the situation. As Mirtazapine (of which I have not heard of before) is an anti-depressant and treatment for PTSD, I guess it may have a calming effect. This sort of correlates with the anxiety reduction I obtain from B1. I know you don't feel that stress is a contributing factor - I however believe that stress and anxiety is a contributing factor in just about every illness there is. For me, if I am too busy to think about how bad I feel, I can almost feel fine. If I am not busy and think about how rotten I feel, I can easily believe I must be dying.

    It appears no GPs or specialists anywhere in the world have a clue about LPR and if they don't suffer from it themselves, they have no understanding of what we are going through. Sorry I can't be of much help either, other than to say I have found some relief with keeping calm and eliminating certain carbohydrates as per the Fast Tract diet.

    Report Reply
    • Posted

      Dear Sane,

      I stress quite easily also!! I have always my shoulders, and my stomach muscles tensed! I realize it and i have to relax them..all day.

      I went on a vacation recently, the sore throat I did not feel it that much! BUT When I returned home, I started again to feel it!!

      I started with 40 mg of omeprazol 2 a day, but I felt worse, my throat was red and palat burned, so I reduce it to 20 mg 2 a day. Later in my vacation I run out of omeprazol , so I started with zantac 150 mg 2 a day, later on this one run out, so I took 75 mg zantac 2 a day and I was feeling better, I did not feel the throat symptom at all in the evenings, but any way I took the 75 zantac in the evening, many days this happened.I did not feel any symptom in my throat. I was distracted and relaxed a bit more, that is when I returned home, I felt the symptoms again, now they do not go away. I spend more time thinking about them.

      i found a verse that is been helping me a lot, but I have to practice it a lot because I am in continual stress, and muscle stiffness, more in my stomach. What do you think?

      KEEP POSTING.

      HUGS

      PS I have a hiatal hernia, but before this very stressful episode that has happened in my life, I did not have this throat soreness. and the relux went away in a few weeks.

      Report Reply
  • Posted

    Daxter, If all the tests are showing clear then it could be muscular. Have they done a pressure test or tried you on metacolpromide or domperidome? I know you don't want to go on life-long medication but judging by your post you're in a bad way. I hate the thought of being on omeprazole for the rest of my life (I've already been on it 20 years) but my quality of life is sooooo much better when taking it. Without it I am in agony. My lower oesophageal sphincter relaxes when I'm asleep. Even an operation didn't cure it. On my first endoscopy it showed 50% of my oesophagus was eroded. I hated the thought of taking drugs endlessly so I tried all sorts of alternatives with diets and suppliments all to no avail. Now I'm used to the idea of taking the drugs. If you do find something that works for you then stick with it. Surely popping a pill a day is better than self-harming. I wish you luck in finding the cure.
    Report Reply
  • Posted

    Hi Daxter and Perdie,

    Are you still around?

    DO YOU THINK THAT MAYBE STRESS MAKES IT WORSE?

    Keep in touch

    Hugs

    Report Reply
    • Posted

      I'm still around.  I saw the consultant again at hospital who suggested it was all in my head - stress related as the 2nd endoscopy showed a definate decrease in osophagitis than the 1st endoscopy a year previously and yet my symptoms are all still here.  When I mentioned LPR(silent reflux) he just looked at me quizically and asked what this was. I explained my symptoms again but he didn't want to acknowledge that this was a real condition and insisted that it was likely stress related.  I pointed out that I don't generally suffer from stress and the only stress in my life is the fact I've had this for over 2 years now with no real improvement.  I mentioned I think it's LPR as only have issues upright - lying down and sleeping are the only things that give me relief.  I felt he was ignoring everything I said and I can't afford to go private.  I am on waiting list now for barium meal and mamotry testing but if neither of these show anything the Dr has said we will need to accept it's probably stress related.  I can't afford to go private but my NHS consultant seems to have no idea about what LPR is which fills me with no confidence.  PPIs didn't help and now my GP refusing to try me on anything else until I've had a diagnosis which is not looking likely any time soon so in the meantime I'm going to try the fast diet as have had some improvement with Dr Koufmans diet but it is just so restrictive and yes the stress of it may be making my symtoms worse but it's not the cause in my opinion.
      Report Reply
    • Posted

      I'm assuming they gave you PPIs? Which one are you taking and for ho long have you been taking it?

      Reason I ask is because there seems to be a school of thought that GERD gets treated fairly quickly with PPIs - that's were you have common symptoms like heart burn. BUT LPR gets treated with PPIs over a longer period, because you need to repair the damage that has been done to your throat so reduce stomach acidity longer to allow healing.

      I am skeptical about this because there is some parts of the medical profession that think the problem is caused by gases because we are not digesting our food fully. And this causes gases which causes your LES to flap open and allows tomoach contents to irritate your throat. So they suggest you need more acid and more digestive enzymes.

      They are both very opposing ideas which is exhausting to even think about. So have you had any luck with PPIs over a consistent long period like 8-10 months?

      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