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

Posted , 28 users are following.

Daxter
Daxter

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, 62 replies

62 Replies

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  • lucinia
    lucinia Daxter

    Posted

    Following patricia59435's comment regarding untreated reflux possibly causing oesophageal cancer, I feel I must point out that although we are at a greater risk than those without reflux, it is still an extremely small risk and would urge people to not worry unduly about this. My mother had oesophageal cancer but apart from the odd bit of heartburn which was quickly dealt with by a Rennie, she was completely symptomless. The first she knew she had something very wrong was when she could no longer swallow food. The doctor said then he would have worried less if she'd been in pain.  
  • chris78302
    chris78302 Daxter

    Posted

    Hi daxter. I am also suffering from the same problem from last 7 years now. I had tried every thing.  I went to all the doctors Gi, ent, family doctor. They did all the test xrays asthma allergy reflux test upper endiscopy so many other tests. All came back normal. But I know I am suffering so much I also pray so much that one day God will heal me and all the other people who suffer from this problem. There is not a single day in last 7 to 8 years that I had not gone through these symptoms like clearing throat, coughing kind of unpleasent breathing.  It also makes my anxiety level go so bad. I been searching on this problem on internet almost every day. I took zegerid, nexium, prilosec, zantac, pepcid complete, alkaline water with ph 9. Every thing but I still don't feel normal again. My symptoms get really worse after eating. Please tell me if you know any thing that's works for you so I can also try. I used to was feeling very good but this problem happens from last 7 to 8 years now. But you dont worry you are not alone suffering from this problem.
    • RAP27015
      RAP27015 chris78302

      Posted

      My story is so odd that I suspect it will not be believed. I'm 67 years old, smoked from the age 18 to 36 and up until two years ago I had a deviated septum. Since my teenage years (yes, that long, I"m not kidding) I have coughed up mucus after almost every drink of any kind, water, soda, orange juice, coffee, etc. ,and, after every time I eat anything, acidic, bland, etc.etc.. I also produce the green/yellow or white goo almost every time I talk for more than a few minutes. All those years I was of the impression that my septum was the cause for what feels like thick post nasal drip. Yep, I lived with all that until 2009 when I decided to see an ENT, a really nice man who listens to me very patiently. I have since been scoped, barium swallowed, taken every PPI known to man, had acupuncture, seen a swallowing specialist. and had my septum straightened. I've had a real bad run this last week and I'm not sure my body can handle this kind of treatment for much longer. I've made an appointment to see my doctor this Monday and I'm going to ask him to consider some alternative treatment but I do not hold out much hope that he will provide me with any alternatives.

      My inquiry is rather simple ... can you advise me how to find a doctor in my area who will consider something other than the text book way of treating such a complex problem ? I suppose I could phone around to ask such a question but I'd guess the receptionists would only provide me with an appointment and tell me to come on in and talk to the doctor. Any advice you can offer would be most appreciated.

    • moonbuggy
      moonbuggy RAP27015

      Posted

      Hi Rap

      Sorry you are suffering. Not sure which country you are in. If in UK, there are a lot of registered herbalists who may be able to help, You could also try ayurveda treatment which is supposed to be beneficial.

      Have you looked at food intolerances as some foods (dairy for one) increases mucus production

      good luck

  • carmel83758
    carmel83758 Daxter

    Posted

    This worked for me and for many others.

    Take one each day.

    bacillus coagulans - you can get it on the big shopping site you know the one, beginning with A and sounding like a jungle. They are quite cheap

  • chris78302
    chris78302 Daxter

    Posted

    Hi daxter how are you doing now just wanted to know bcoz you have same condition as mine and did all the tests to find out and always was thinking its lpr and did everything but the problem was injured nerve in throat known as laryngeal sensory neuropathy. Took elavil 25 mg from very first day after taking this medicine i was 60 to 70 % better.
    • tyra21865
      tyra21865 chris78302

      Posted

      Hi Chris, your input is seriously, seriously a lifeline for me at this point. I hope this discussion is still open ...because I'm currently trying to figure out if I have LPR or LSN (Laryngeal Sensory Neuropathy). Particularly as I will be getting the Stretta procedure soon (I haven't yet had a pH probe done yet though and will be getting all these a week before the stretta.) But I've had two laryngoscopies, and the first one showed mild swelling while the second one showed that it had healed. But the pain still continued...A kind of sore burning on one side of my throat (the right side.) Is it possible to have LPR that predominantly on ONE side of the throat?
  • marla69451
    marla69451 Daxter

    Posted

    I have similar symptoms without the stomach issues.  I've also tried mostly everything.   Have you had any luck with treatment ?  It's maddening 
  • lando60327
    lando60327 Daxter

    Posted

    Daxter, I know it's frustrating but if several doctors (including specialists) are saying that nothing is physically wrong then it might be time to accept that stress/anxiety could be the cause of your issues. No doubt we've all got a physical predisposition to GERD/LPR, and no doubt our digestion is linked to our emotions more than the average person.

    I suffer from these ailments and I do wonder if you share a bad trait of mine;  whenever I am tense/stressed/anxious I subconsciously tighten and pull in my whole abdomen. This constriction is bound to have an effect on digestion, just like wearing a tight band around your stomach would. The inescapable fact is that I don't have anything like as many issues when I am calm and happy vs when I am anxious and stressed, so the link is definitely there.

    When you're feeling these horrible sensations try breathing in for 5 seconds, hold it for 4, then breathe out for 8. As you do this make sure you breathe from your stomach, not your chest, and try to let your belly hang loose instead of holding it in. It's got to be worth a try!

  • grhunto
    grhunto Daxter

    Posted

    Daxter, your symptoms match mine exactly. I have been battling this for over 18 months now. Even had sinis surgery. The surgery cleaned out the sinus cavities, but the back of my throat and up into the back of sinuses feels like a constant infection going on. I would not be able to tell if I had the flu. I always feel like I have a head cold. I have been following a low acid diet. Staying completely away from anything with a PH level lower than a 7 is the only thing that has brought me any relief at all. In addition I do a sinus rinse with saline and tea tree oil.

    I read an article that explained that the discomfort with LPR is mostly cause by the enzyme pepsin. Medications do block or neutralize pepsin. This enzyme digests protien. It penetrates the tissue in your airways and digests the protien in that tissue. It can remain in the tissue up to 48 hrs. Acidic food will activate the pepsin, foods with a higher ph and lower acid will neutralize the pepsin and make it inactive. I do the sinus flush with saline and tree oil mix because it has a PH level of 9. I only started this 2 days ago. I have gotten some relief, but I think healing is going to take time. Knkw that you are not alone. I live every day with a headache thay range in pain level from 2 to 7. It is miserable and it is so hard to talk about, not sure many people can understand unless they have been through it.

  • Nate_the_Great
    Nate_the_Great Daxter

    Posted

    Hello Daxter!

    Please, can you give an update as to how you are doing? Would love to hear if you found some relief after all this time

    Thank you,

    Natalie

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