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

Digestive health
1

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.

2

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.

3

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.

4

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.

5

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

6

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.

7

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.

8

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.

9

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.

10

Oops, sorry, replied to you Purdie instead of Daxter.

11

Hi Daxter and Perdie,

Are you still around?

DO YOU THINK THAT MAYBE STRESS MAKES IT WORSE?

Keep in touch

Hugs

12

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.

13

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.

14

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. 

15

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

16

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

17

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.

18

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.

19

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.   

20

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.