LPR/Silent Reflux - desperately in need of a miracle. Has anyone recovered from this?

Hi all

I have just joined this site and must say it has prevented me from going mad! My story is that after a year of

Suffering on a daily basis with the following symptoms ie, blocked nose and excessive mucus in my throat

And having to spit it out regularly, I have now, just last Thursday been told I have LPR!

The docts have tried me on various nose sprays, including steroids, which I had to stop using after a few weeks as they gave me nose bleeds, even though I was told to take them for 3 months by ENT and then come back.Also had hayfever meds prescribed, even though I don't get hayfever, had 2 tubes inside my nose and just told my nasal passages were swollen and offered more nasal sprays and at that time I had a burning pain in my throat, also had a CT scan of the sinuses and given the all clear, had PND and was having to hawk up mucus throughout the night and morning but then had a tooth infection and was prescribed antibiotics for 7 days which helped the infection but then made my mucus spitting episodes worse ie during the day, ie on train to work, on bus, at work, on the road etc etc, and it as u know is very stressful and embarrasing! I have to carry tissues and a bag to place them in,wherever I go.

I have done some searching via the net, but SO GLAD I've found this forum! We are all really suffering and I truely believed I was the only one. I did suffer from acid reflux couple of years ago, but only had heartburn and belching as the symptoms and also had a duodenum ulcer and was on PPI meds for these symptoms, which did help. I am now taking 30mg Lansoprazole for 4 weeks, then have to go back to my doct. I have also been referred to have an allergy test done, as when I'm in a hot room or kitchen due to cooking steam, I get a mucus build up in my throat, don't know if its related to LPR or if my nasal lining is affected. I also wake up every morn with saliva in my mouth and have to spit it out and when I get up I have to start hawking the mucus that has accumulated further down in my throat during the night.

So last week, had another ENT appt and another naso endoscopy and was told that I have "acid" coming up and an inflammed throat! Have been waiting a whole year to hear something, anything about my condition, I just wanted a name or diagnosis!!

Prior to this diagnosis, about a month ago, I started taking digestive enzymes, as I found that it is worse on an empty

Stomach and It would still happen after I had eaten, but now I take them, have noticed slight difference.

I also seem to have bouts of episodes around the same time of the day ie in the morn when I awake, mid afternoon, and evening and these are all just before meal times, so I try and eat something just before its due to happen, when I can, even if its a bit of bread, until my meal is ready.

Am so grateful to all your suggestions and advice. I will def try the alkaline water and chewing gum and later on after being on PPI will try Gaviscon Advance or is it safe to take it now, together with PPI?

JPT, I would like to receive a copy of your notes please and will email you shortly to request these.

Regards all and let's keep searching for solutions!

Becks

Hi all. I am from the US. I need some help with these LPR symptoms. Last summer I had some sort of food poisoning. When it was over, I felt food just sitting in my stomach and would vomit regardless of what I ate once or twice a week for a month and a half. Doc gave me Nexium and the vomiting stopped. A few months later I weaned off but found that I was having throat spasms that would make it hard to breathe and swallow. Doc put me back on Nexium. Didn't work so he moved me right to Prevacid which made me sick intestinally (diarrhea). I stopped the Prevacid cold turkey and suffered such bad rebound that I was home from work (I'm a music teacher) for two weeks not able to sleep at night, choking, etc. I have lost so much weight since the summer and continued losing more over the last month of this rebound. ENT says my throat is swollen and I have excessive mucous but vocal chords are fine. Swelling isn't enough to constrict breathing. Upper GI study was normal except for some diverticulum that doc says is too small to cause symptoms. He and the Allergist put me back on Nexium but twice a day. I did that for the last week and the last two days went back to one a day. I really want to get off of it. Allergist also put me on Dymista nasal spray which has allowed me to actually sleep but the trial size he gave is almost gone. Gastroenterologist didn't want to do an endoscopy with me having throat spasms. I just ordered a PEP test from the UK. It will probably take a long time to get since I'm in the US.

I have been taking distilled aloe juice (no bitter taste and distilled is best I'm told), Manuka honey, DGL off and on, probiotics and magnesium/calcium citrate powder mixed with organic acid free apple juice.

I want to wean off the Nexium but need something to prevent the acid from getting into my throat. Right now, my throat is sore, I can't do much talking, and I feel like someone is strangling me and there is a lump in my throat. I feel weak and have trouble sleeping since I have to sleep sitting up. There is pressure in my sinuses, I sneeze once a day (literally once), and I am dizzy every day. I'm working out my panic/anxiety issues and doing well lately with them. My nose runs all day and I have postnasal drip that is very heavy. I also feel like my food just sits in my stomach if I don't take the Nexium. (I just took a DGL and it took that feeling away as well. I hope I can take it with the Nexium).

I'm currently waiting on my blood test results. Will this ever go away? I'm only 32 years old, 5'3" and weight111 lbs now so I'm not overweight. I am doing a low histamine/low acid diet which leaves me with like 10 foods, mostly vegetables and almonds that I can eat and it totally stinks. Any advice would help. Thanks.

Hello musicchick581,

Your problem is probably bacteria, or it could be virus. (toxin and parasites are possible to), because from your story is clear, that trigger point was food poisoning, not life style.

In your place first you need to do endoscopy, because you cant do a lot if you don't know are stomach is inflamed.

Wide range antibiotics would be an place to start if nothing changes,

Hi Becks

likewise. I am so happy to have found the information on this forum, thanks to JPT mainly and also the adversaries to JPT's valued information and other tips and hints expressed by many others. JTP, please may I also have your notes. Your thoughts and suggestions have revolutionised my thinking. I too will send you a private mail.

My story is that I too have been on a long road of suffering (until recently when due to a happy accident and the advise put out on this forum I have started to have some welcome relief - More on that later after I have narrated my history).

I have been through a plethora of private specialists, starting with a gastroentorlogist who gave me an gastric endoscopy and said he could find only non specific gastritis (What does that mean?) And during the procedure mentioned that I had a hiatus hernia but did not report that on his report. That was in 2011. Also had h pylori eradicated after 2 triple and then quadruple course of antibiotics. He referred me on to a specialist to check my chest (can't remember what his title of specialism is now) and found a clear and normal chest despite me being a smoker. I then went under the care of an endocrinologist and told me I had metabolic syndrome and finally an ENT consultant who has remained with me since 2011 who had enough respect for me to indulge me with all the MRI's scans, fluoroscopies and referrals I asked him to consider for me. However no answers were coming.

My current conditions are

1. Underactive thyroid diagnosed a year ago. I am on lifelong medication for this now. Grrrr! Had bad edema in my feet during our hot summer from which I have recovered but now think I am carrying fluid on my stomach (feels different to fat). More grrr!

2. Blocked salivary glands first occurrence in 2004 and still have issues every now and again.

3. Chronic coughing and sticky mucus/phlegm first noticed as an issue in 2006 which rapidly became a regular nightime occurrence. This one is a killer and I am so depressed with it.

This is only a nightime and upon waking up issue. Very rarely, I will have the sticky mucus problem during the daytime and mostly if I have not managed to expectorate all the mucus in the morning which then creates more mucus. Until my recent bouts of relief I would awake choking every night and could not lay down till I had cleared my throat and would collect a huge amount or mucus in a cup which I would measure in the morning. I could expectorate 200 + ml every night and am. Always clear but sticky mucus. Doesn't even fall down the drain under its own weight. (Sorry for the details) 2 of 3 pathologies of the mucus reported it was normal mucosa and 1 of the pathologies reported it was gastric mucosa. The gastric mucosa was ignored and not followed up, sadly. In all, I would lose up to 2 hours during the night and around 2 hours in the morning. That's about 4 hours each night. All the specialists I went to were baffled and wrote so in their reports. I would browse everything reported under sticky mucus, nightime coughing, would enter mucous, mucus, (making sure all spellings were covered in my searches) phlegm, choking, expectorating etc in my browser to see what was available on the net. There is a huge community of sufferers out there who have similar to me followed a line of medical inquiries leading to nowhere. Finally, I had a consultation with another ENT consultant who mentioned LPR. It was a difficult consultation as I argued with him that it was not the case as I had previously been cleared for acid reflux following 2 fluoroscopies and a very invasive gastroscopy (the non specific gastritis report). However he put the idea of LPR into my consciousness which at that time I chose to ignore. I was convinced that I had a throat issue as I felt the mucus was expelled from behind my tonsils. I also had tonsil stones to add to my desperation and I generally found that I had more volume of mucus when I had an episode of a tonsil stone. Finally I got a cyst on my tonsils and I asked my (long-suffering) ENT consultant to take out my tonsils which he did in November 2013. I was so hopeful that this would have sorted my problem. My ENT consultant told me not to bank on relief and at that very moment as I was being discharged from the hospital the anesthetist came to look in on me. She said she was minded to agree with the ENT consultant and quite likely I had LPR. So I heard this again. She explained in 2 minutes that I could have gastric fluid and/or vapours seeping into my throat.

Then I had to go through a very bleak and dark recovery from the tonsillectomy and now my issues became worse. The mucus was now sticking to the top of my throat whereas before it felt below on and behind my tonsils. Now I had ear aches (all part and parcel of the tonsillectomy) and now I had sinuses when I had so far never had any sinus issues. And of course my mucus issues had not gone away at all and seemed even more exasperating than before.

Fast forward to recent weeks. At some point I picked up a packet of liquorice tea. I started to drink bicarbonated soda to gargle with (picked up from a tonsillectomy forum) and found that if I both gargled and drank the liquorice tea and gargled and drank some bi-carb solution (leaving around half an hour between each, before going to bed that I did not have mid-nightime choking. I have had to stop the bi-carb because I felt the water retention coming back. I did not know that these 2 things were directly dealing with my issue till I came across this forum which was such a blessing when I finally decided to check out LPR and sticky mucus. I cannot express enough the joy of reading all the comments which now finally made sense.

I also have now been to another gastro specialist who sent me for a ph monometry and showed evidence of reflux and has recommended that I have a fundoplacation. I am reluctant after hearing that it gives you bloating and is irreversible.

Gosh I have written so much and still have more to say. I'll try to be brief....

Symptoms:

Feel dizzy, have been putting on weight, distended stomach, copious mucus but seem to be sleeping through the night mainly though am still awoken with a hacking cough some nights.

Things that seem to help:

Liquorice tea. I have 4 brands but the best one that seems to work at loosening the mucus and perhaps stopping it from being so voluminous is the Twinings brand. Alas, I have to restrict this to one drink which I take at night as it is not a good idea to take too much (also causes water retention and high blood pressure - both issues that I have and should not exacerbate). Sometime Apple cider vinegar helps and sometimes not. Have been taking dgl liquorice but do not feel this is giving as much relief as the tea. Gargling with sobicarbonate helps to loosen the mucus. If you do not have a problem with sodium then I found drinking it was also a great relief provider. I have tried grapefruit seed extract and initially I thought it was a miracle product and it cut through some mucus but now I think my body has got used to it.

My mother (may she always rest in peace) used to make us inhale the steam of torn cabbage (not cut) leaves and ginger which always broke our phlegmy coughs. I will start doing this again since I have recently read that cabbage is a really high pH vegetable and perhaps it releases a high pH steam.

Sometimes at night I would eat some dairy milk chocolate as it would create instant sticky mucus and would help to draw out the mucus sitting on my throat. I don't have an appetite for chocolate in the morning so will smoke which does the same thing. I know I shouldn't smoke and perhaps that is the main and only reason why I have this issue but on the occasions when I have given up (no more than 8 days) the issues remained unabated.

I take probiotics regularly but do tend to forget to take them.

I bought an alkaline jug and have been using alkaline water for the last 3 days. Jury is out at the moment as I try to assess how effective this is. It supposedly raises the pH to around 10 but I have not tested this. (Any views on what I should get to test pH on stuff generally out there??).

I honestly can't assess if I have an acid problem or lack of acid problem. Have during my years of suffering been on and off the PPI's with no relief. I have ordered some betaine hcl and will test with this product next.

This is not only miserable but continues to cost me so much money and time wasted just hacking. I wonder if my tongue is an issue as I feel (particularly after my tonsillectomy) that it is falling farther back into my throat and seems swollen and creates a vacuum between my throat and stomach and I feel this helps to pull out the mucus from the stomach. This last piece is from information I obtained from browsing. I cant find it now to provide a link but it will be there in my history if anyone wants me to find the link for them. Just ask.

Though I have been having some relief, I had a mother of a morning this morning and expectorated 160 mls of mucus. And this despite being on a completely alkaline diet yesterday. Nothing makes sense sometimes.

I have been drinking up to a litre of water every morning and jumping on my feet to see if it may make the hiatus hernia slip out but I don't know if it is effective. I am going to invoke my private cover and get another gastroscopy done to see if there is any better diagnosis than I obtained from the first one I had done in 2011. After which time I may consider whether I do it the chiropractor route or operation. On that if anyone knows any chiropractors in London then please let me know.

Hope this post helps anyone out there. I am grateful to all the people who have taken time to put their messages on this forum because for the first time I feel that my issue has a name. I do think it may be LPR. I will proceed to get the medics to confirm this for certain.

I forgot to mention another tip for the mucus sitting in the throat. I have started to gulp (needs to make a sound and feel the effect as it passes the throat) tepid water in the morning - I will do 1ltr+. There are 2 reasons for this. 1, to start the throat from making a forward peristaltic motion forcefully and take the mucus downwards and 2, bringing the mucus back up simply reverses the peristaltic forward flow. So it is important to try to not bring up the mucus. Easier said than done, I know.

Also the forward peristaltic motion continues from throat to stomach to the lower intestines and eventually out the other end. When I refuse to bring out the mucus (only because so many people on this forum commented not to do so), I feel I have easier emptying of my stomach for the rest of the day.

Tickled

Hi Tickled or should I say tortured?

You have been through the mill.

just sent you a private mail with my email address.

will send my notes as soon as you reply with yours.

The HH you have if it is not too big will be fixed with sutures during any surgery you choose.

I think your reference to mucus is the natural body responsew to the attack from all refluxate products.

Acid,Pepsin, Bile salts , food, etc.

The oesophagus can cope with some insult as it produces bicarbonate to deal with some relux.

PS. Everyone refluxes several times a day. We just do it more often and to a higher level.

Having low saliva production is a good reason for the insult to be much worse in your case.

The overview I have for you is that the solution is multi -faceted.

No one thing will fix it completely.

Its certainly worth trying all the beneficial add-ons before you jump to surgery

and even then its worth changing lots of lifestyle things at the same time.

1 Try to eat your last meal of the day at least 3 hours before retiring to bed.

2 Try eating smaller portions at regular intervals rather fewer larger meals.

3 Eat slowly.

4 Wear loose-fitting clothes. A tight belt will trigger reflux

5 Avoid foods and drinks that are known to trigger heartburn symptoms, these include:

onions, peppermint, chocolate, caffeinated drinks, citrus fruits and juices, tomatoes and

high-fat foods.

6 Keep a symptom diary and record when your symptoms appear and what specific

meals and activities this relates to.

7 Maintain a healthy weight. Keep your BMI in the normal range.

8 Stop smoking.

9 Learn how to breath using the diaphragm it tones the LES

10 Avoid alcohol.

11 Take regular gentle exercise such as walking. Avoid lifting weights.

12 Exercise can trigger Reflux symptoms if this is a problem wait at least two hours after

a meal before exercising.

13 Drink plenty of water.

14 Use PH 8.0+ alkaline water to denature Pepsin in the mouth, airways and oesophagus. Take a peptest to see what levels you are refluxing and retest to see how the levels have come down after these changes.

15 Raise the head of your bed so that your head and chest are higher than your feet.

16 Sleep on your left side, because of the shape of the stomach reflux happens less often in this position.

17 Increase the speed of transition through the stomach with something like Fybogel'

18 The pyloric sphincter at the stomach exit needs magnesium and acid to make it work. PPI stops the absorption of M and reduces acid and so is counter productive. Get off PPI and take Magnesium supplements.

19 Use deglycyrrhizinated licorice, or DGL. But be aware too much can cause ankle swelling and hypertention.

20 Use Probiotics to help positve gut flora aid digestion. Antibiotics kill all flora not just Hpylori.

Best Regards JPT

justpassingthrough

OK, I'm new on this forum but like others here suspect I have LPR but never been diagnosed and live in the UK. My story so far:

I came down with a serious sinus infection in May 11 which had me off work for nearly 2 weeks. It

eventually went away but left me with phlegmy throat, post nasal drip and globus feeling. I went to Dr and

over 6 months and was treated with a variety of things from antibiotics, PPIs, domperidone, yeast pills, with no great effect. I felt like a guinea pig. I was then referred to ENT who in Sept 11 stuck a tube down my

nose, admitted it looked a bit red and could be tonsillitis. More antibiotics and gaviscone advance given

with no improvement, back for a follow up, was told the junior who had seen me had gotten it wrong and it wasn't tonsillitis at that everything looked fine. As I kicked up a fuss I was admitted for a panendoscopy

under general anaethetic in Jan 12 but this came back clear. They then said it would eventually go away it was most likely caused by anxiety even though I'm not an overly anxious person, I was then prescribed a number of anti-depressants and diazepam for another while which didn't help so I was then referred onto

gi. There they tried me on stronger PPIs for a further 4 months which didn't help and scheduled me in

for an endoscopy in Jan 2013. They said that if this didn't show anything there could be other tests

available that could get to the bottom of the problem although no-one suggested LPR as a possible

diagnosis. My endoscopy showed inflammation but not enough to give a conclusive

diagnosis of esophagitis. I was sent away and told to just drink more water and come back in 3 months for follow up. 3 months on issues are getting worse with a now chronic cough, constant throat clearing,

tightness in throat and what felt like throat spasm on a regular basis making me feel like breathing difficult. Back to the GI who was off sick the day of my appointment. Saw someone else who said they would put

me in for a 2nd endoscopy within 3 weeks and a follow-up appointment. Due to a cock up I never got an an

appointment through for a 2nd endoscopy and had to phone them back, they hadn't put me down on the

list as promised. Another endoscopy appointment made but at a different centre but as it was much later I was told just to cancel my follow up appointment at the hospital as results wouldn't be back in time. Had 2nd endoscopy Sept 13 which I then got a letter about saying no further follow up was required as inflammation had reduced significantly and they thought my previous swallowing problems were caused by more

serious inflammation. Problem is the people who gave me the 2nd endoscopy didn't know my history and

were unaware of my problem ongoing for 2 years and far from being better it is much worse in that I now sometimes struggle to sleep with my coughing, wake up with phlegmy throat and post nasal drip and spend all day with very tight throat, constant swallowing, throat is very dry and then by the time I get home from work

throat has normally gone into spasm and suffocating feeling. I'm also finding it more difficult now to eat

solids without regurgitation which wasn't a problem previously.

Last week I went back to the Dr and asked to be re-referred to the hospital as shouldn't have been discharged in the first place. This could take months - the last time it was 4 months before I got an initial appointment. In the meantime I am giving DGL Licquorice a go along with alkaleizing my water. Started both of these a week ago. No difference yet. Am going off on holiday next week but when I get back I am considering

ordering the Pepsin Test and depending on results of that starting on the Dr Koufman Reflux diet. I am hoping that by doing these things I will at least be taken seriously when I do eventually get back to the hospital.

What do I need to do to be taken seriously at the hospital when I eventually get seen? The last time I felt

they weren't prepared to do anything, PH monitoring has not been offered as an option so far. I feel I need these tests to hopefully fight for the Linx surgery that has been mentioned on these boards but as an NHS

patient I feel that I am just being told it is all in my head or will go away if I don't think about it. Maybe it's

not LPR as endoscopy did show inflammation but that was all. Anyone suggest what I should be asking the hospital for so that I am not treated as just a trouble maker or any evidence I can give them to support my case?

PS I am already taking magnesium supplements, vitamin D3 and alkaleine water. The alkaleine water

has been making me feel quite nauseous and a bit dizzy but I read this is part of the detox process and

suggests I could have high pepsin or acid getting flushed out which is causing the side effects so I'm hoping the side effects will decrease after a few weeks. I have also recently been getting a very metallic taste in my mouth and am constantly thirsty no matter how much I drink which also often wakes me during the night

Thanks

Lisa

Just another query. Does anyone know where I can get bicarbonate of soda chewing gum in UK or online?I understood Orbit complete had bicarbonate of soda in it but nothing in the ingredients on the pack I

bought locally. when I went onto amazon the reviews said that they used to put bicarbonate of soda in it

but have discontinued this. Had a look at some tooth whitening gum online but nothing obvious as to

whether bicarbonate of soda in it. Would like to use this to keep the saliva moving, normal chewing gum

helps a bit stops me constantly swallowing but I've been advised it would be better to use types that have

bicarbonate in them usually sold as dental whitening gum but my local supermarket no indication on

ingredients for any of the brands. Any ideas on where I can buy to relieve the symtoms a little?

You can get baking soda "Between" gum on Amazon.

Hi Susan

thanks for that. Have been on amazon and ordered some "Between" gum. Anything to help reduce the

symtoms of continual swallowing which now gives me severe spasms and pain is worth a try whilst I wait to be re-referred to secondary care for them to ignore my concerns again. Going to find the funds to get the

pepsin test done too so that I can give evidence to doctors of how serious this is affecting my life that I paid for it myself. I wish more doctors would provide it in their surgeries, it must be a cheaper option than

referring to secondary care and getting endoscopies that show nothing concrete. It's so frustrating.