Suffering from LPR for 5 years, I really need some help...

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Hi, my name is Tobi (25 years old, from Germay) and I am also suffering from LPR for round about 5 years. I always was in a good physical condition (no overweight, right now about 64kg on 170cm), but otherwise I often suffered from colds during the winter. The first symptoms occured in February/March 2011. I have been diagnosed with LPR through ph-metry (throat) in 2014, prescribed PPI for 3 months. I moved out in October 2010. I began to eat more healthy than before, but my nutrition was already on a good level before I moved out. I always did a lot of sport and at that time I had basketball training three times a week (been in a sportsclub for more than 10 years). I also do weight/strength training since early 2012. Right now I have stopped most of my sports activities for the last 3 months. I’m wondering about something. From April to August 2015 I did an intense strength training routine to reduce my body fat. During that time I had no symptoms at all. But right now I can’t even ride my bike for 30 minutes without getting a sore throat…

I will try to briefly describe my symptoms and the things I did against them. In the following I want to go more into detail about my course of disease for those who have more interest in it.

- I got a Tinnitus just before the health problems began. I got used to it over time and only hear the sound if I try to focus on it. Probably this was some kind alert signal which from my body.

- Inflammation / the feeling of inflammation in my throat

- Increased amount of secretion/mucous in my throat (PND?)

- Thick/tenacious mucous after physical activities, i.e. sport, which I could not really cough up

- Burning on my tongue/tip of my tongue, geographic tongue

- I often have a dry mouth and some kind of a dry spot in my throat

- Usually I do not have any symptoms right after waking up, but they start to come back after about 5-30 minutes

- Yellow mucous/phlegm after waking up when I spit the mucous in the sink

- Susceptibility to infection, in Winter 14/15 I suffered 4 months from a recurring angina of the salpingopalatine fold

-I have a lot of mucle tensions, especially in my legs, calfs and shoulders, but this is probably in no relation to my symptoms

- ENT gave me something to boost my immune system, no real benefit

- ENT told me that my throat is still blazing red and sore/inflamed

- Digestive problems with constipation on some days, stool is like hard lumps, but I am drinking more than 3 litres a day

- First gastroscopy without real medical finding => No hiatus hernia, but slight sign/evidence gastritis, no Helicobacter pylori

- Second 24h-ph-metry (this  time in esophagus), no sign of relfux, only one incident of relux for about 1.6 minutes, DeMeester-Score 0,65

- Manometrie without conspicuity

- Second gastroscopy (one year after the first) => No hiatus hernia, moderate antrum gastritis, slight biliary reflux, found an inflammatory change shaped like a streaky redness in the antrum

- Took PPIs for about a year, Pantoprazol 20mg in the morning and before going to bed

- Symptoms improved in the beginning and the frequency how the symptoms occurred went down

- After 7-8 months my symptoms started to get worse again

- I dropped the PPIs three months ago, my smyptoms bascically stayed the same

- I am using the diet from Jamie Kaufmans book „Dropping Acid“ since 3-4 weeks, no real change so far

- No dairy and no gluten

- I take 10-12 drops of Alkaline pH Drops in 0,7l of water twice a day

- Gaviscon Advance before going to bed

- Bought a good inhalator in case I get symptoms of a cold or an infection, so far I had no cold/angina this winter

- Nasal irrigation before going to bed since 2012

- Elevated the head of my bed for about 4 months

- Allergy test on the most common allergens, came back negativ

- Allergic to penicilling, zithromax and erythromycin

- No asthma, got tested about 1 or 2 years ago

- Did a complete blood count, according to the result, I should fully healthy, immunglobulin normal

- I have a hypothyroidism/underactive thyroid since I was a child, sensitive to cold, have an appointment to check my thyroid on 18th of February, thyroid can also cause throat problems, maybe someone has some experience on this

- Tonsillectomy in 2013, only had mild/bland diet in the weeks after the surgery and in this time I had no symptoms at all

- Gall bladder removed in 2014 because of gall stones and billary colics

Is there a connection with LPR? Since the surgery I wake up with pain in my upper stomach if I ate too much fat, like 30 grams, in the evening, the pain only lasts for 5-15 minutes

What’s about lentils or legumes in general? Should I also quit on them? How is it with fish and meat comumption? I eat meat or fish basically every day, because I have no other good possibility to cover my daily needs of protein, because I am not eating dairy anymore. Should I try to drop fish and meat from my diet for let’s say one or two months? What do you think of salmon (not wild salmon), could this be a problem for me because of  ist high amount of fat?

Moreover I read a lot about eating smaller meals, but I am wondering how do you define this? My biggest meals rarely have over 600 calories.

Here are some possible examinations I could try to do:

-Peptest, is it only available in the UK, or does someone know how to order it here in germany? Can I do the test by myself or do I have to send the samples back to a lab?

-Scatoscopy/sample of stool to test for candida, I read that there could be a connection with LPR and could relate to my digestive problems

-Vitamin D deficiency

- Test for food intolerances, I heard that’s kind of hard, because you  can only test for antibodies in blood, but those test seem to be not that significant

- Nutrition counseling

- Probiotics? I just have no experience with this stuff.

- Injured nerve in throat known as laryngeal sensory neuropathy, which type of doctor would you recommend?

That’s all I can think of right now. Maybe one of you has some other ideas or can approve some of my thoughts or give me some hints on how to deal with my condition and symptoms.

In the following I want to describe the things I mentioned before in more detail. So if you do not want to read this huge wall of text, you can stop here. If you are more interested how this developed for me, than please keep on reading.

I had the first symptoms in February 2011, so round about 5 years from now. It began with an inflammatory feeling of a spot in my throat. This feeling is kind of similar to the first symptoms of an incoming cold. I also often had a burning tongue. At this time I still thought that my tonsils (almost had kissing tonsils) where the reason for my sore throat. So I visited many ENTs until somenone said that my tonsils are chronically inflammed and should be removed. I had surgery in June 2013. I could only eat mild diet (basically only pudding and semolina porridge) during 6-8 weeks after the surgery. During that time I had no symptoms at all, but they came back after I quit the mild diet. In consequence I had to keep looking what caused my symptoms. That’s how I found out about LPR.

I should also mention, that I got an angina of the salpingopalatine fold (began with a normal cold) about 4 months after my surgery. My ENT told me that it shouldn’t be the case to get sensitive for those kind of infection after you have your tonsils removed. But it turns out that I got pretty sensitive for it and maybe the lpr is also a reason fort hat.

Next I had a 24h-ph-metry in my throat. The examination showed mid-pharyngeal ph-value of 6,7. The highest value was 7,71 and the lowest 5,19. Events of reflux especially postprandially(after a meal) and while sleeping. The doctor prescribed me with PPI (Pantoprazol 20mg) which I should take before breakfast and before going to sleep for 3 months. My symptoms improved under medication and I only had this feeling of an inflamed throat on one or two days a week. Right now I had the hope that I had found the right treatment to cure my symptoms and I kept on taking the pills after the 3 months were over.

I also had my first gastroscopy at that time. The results came back pretty normal. I had no hiatus hernia nor helicobacter pylori. But I had signs of a slight gastritis, but the doctor said it would not be a big deal.

My GI also told me to reduce the PPIs over the next months. So I started to take them only every other day. At first my symptoms remained the same.

In November I had another case of angina of the salpingopalatine fold. My ENT gave me antibiotics and after 6-7 days my symptoms where gone. After 7 days I had an appointment at my ENT to check my throat. The ENT told me that my throat still looks blazing red and inflamed, but I had no more sore throat at that time. He also told me that it is probably the lpr which constantly irritates my mucosa in my throat. Two days later I started doing my weight/strength training again. The angina came back another two days later. The next 4 months, round about until March 2015, I suffered from this recurring angina. I will sum this up briefly. I got another antibiotics and after 5-6 days the angina was mostly gone. Two to four days later the symptoms came back and everything started again. In March I finally defeated the angina. I went to my ENT again to check my throat and he told me that my throat would still look blazing red and inflamed/sore like before. He also told me that he could still see some pus in my throat. I asked him what I should to, but he could not give an aswer to my problems and told me that this would not belong to his medical area. I should go see a GI again… I really thought that this ENT would be great until that day…

My lpr symptoms have also changed since those four months. My production of mucous in my throat has increased noticeably (probably PND?). I often have dry lips/mouth and I have some kind of a dry spot in my throat sometimes. The burning on the tip of my tongue is still there.

Besides I often have yellow mucous if I cough up mucous/phlegm in the morning and spit it into the sink. This should normally be a sign of an infection, shouldn’t it? Or is this also a symptom of lpr?

I am still wondering about something… During the 4 months after my angina I followed a pretty intense strength training routine (4-5 days a week) which also included a high amount of cardio each week. I had no real symptoms during that period. I also had a pretty strict diet then, but I am following this diet also right now (even a bit more strict), but right now I have symptoms bascially every day.

After those four months of intense training I loosened on my diet, but I did not eat totally unhealthy at that time. I was in France for two weeks during August and there I probably ate too much of bread and also reintroduced dairy to my diet. The symptoms recurred and when I did my strength training I kept getting this thick/tenacious mucous which I could not cough up at all and also hurt in my throat. So I took a break from my training and also cut the dairy from my diet again.

About 4 weeks later I tried to do some strength training again. The thick mucous did not occur this time, but I got a cold about a week later. Therefore I took another break from my training. And I started again with my routine. My sore throat recurred after only two workouts. I really do not understand this. It seems like sport or physical activities in general make my condition worse, but how do you explain the four months training without real symptoms?

So for right now, I pretty much quit every activity. It seems like any kind of intense activity triggerst he lpr at the moment. I also quit basketball which I did for almost 15 years in a sports club. I will not believe that I have to go without any sport for the rest of my life.

At the end of 2015 I made another appointment to a special consultation for reflux in a hospital/clinic due to my on going symptoms. Certainly I thought about this differently than it finally was. The doctor just asked me if I wanted to do surgery, but I told him that a surgery would be ineligible for me. So they suggested to do another 24-ph-metry, a manometrie and a gastroscopy. The gastroscopy was in the esophagus this time and I asked the doctor if this would be the right choice because I never had heart burn or normal GERD before. But he told me that this examination would be the one and only thing to do in my case.

The results of the examination were quite surprisingly at first. My ph-value was in 99,8% > 4 during the 24 hours of testing. I only had one event of reflux which lasted for about 1,6 minutes. DeMeester-Score of 0,65. The gastroscopy had pretty much the same results as the first one. The cardia closes regularly, no hiatus hernia.

However they found an inflammatory change shaped like a streaky redness in the antrum. It also showed a moderate antrum gastritis and slight biliary reflux. Helicobacter pylori was negative as before and the manometrie did not show any abnormity.

Therefore the doctor told me that my symptoms are to 99% not related to a reflux disease. He told me that those kind of problems could also be psychosomatic. I was about to rage…

The other day I searched  through the internet because I still couldnt believe that I do not have reflux. I found a source which said, that the ph-metry in the esophagus is pretty controversial to diagnose lpr/silent reflux. I could not believe it… I also asked the doctor if this ph-metry would be the right thing and he approved… I’m at a loss for words.

Right now I am asking myself if a gastritis could be the reaons for lpr or otherwise. Or maybe those two things are not really related at al…

At the present time I am trying some stuff I read in this forum. I bought ‚Dropping Acid‘ and I am following her induction diet for about 3-4 weeks. Though my diet already was pretty much like hers, I only adjusted some minor things. Furthermore I have ordered the ph drops and I am taking Gaviscon Advance before going to sleep. As of right now, I do not feel any improvement yet.

At the moment I am pretty lost and do not know what I could possibly do. I have an appointment to check my thyroid at the 18th of February, because I was diagnosed with hypothyreosis when I was a child. The last years my GP checked my thyroid levels, but I found out that he only looks at the TSH and does not consider the other necessary values.

As of the present day, I had the opinion my symptoms are triggered by certain foods, but I can’t think of much more to strip out of my diet. Are there any possibilities to test for food intolerances, so not only for gluten and lactose intolerance? I know that there are tests for antibodies against foods, but I also read that those tests are not really significant. Besides you have more antibodies agains a food which you eat more often.

What do you think of a stool sample to test for candida? Could my lpr be caused due to a candida infestation? Especially in the last six months I had digestive problems and constipation. My stool is like hard lumps (like the stool of a rabbit), although I am drinking more than 3 litres of water a day.

All those health issues really drag me down. In the past I had the sport as some kind of compensation, but meanwhile there is not much left which makes me forget about my condition. I just want my symptoms to improve because I have pretty much moved away from the idea that I will ever become completely healthy again…

I just hope to find some fellow sufferer who could give me some input or hints what I could do or if I am missing something with my symptoms… Well this got kind of huge. Sorry if you had to read through all of this…

tobi2810

 

 

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8 Replies

  • Posted

    Hi Tobias

    'Wow' that was some posting, I have read it through with some interest as I also have some of the noted symptoms. Unfortunately I cannot offer any advice other than what you are already doing. If anything comes to mind I will post again later in the meantime I hope that somehow you will find improvement.

    Robin

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  • Posted

    Hello Tobias,

    Such a lot of tests and issues. Hopefully from the various posts of other sufferers on this site you might find things to try that might help. Gastritis is my problem, and how I have made some improvement with it may or may not help you.

    But first, regarding constipation, drinking too much water can cause it just as much as too little. I made that mistake several years ago, so cut your water down to the regular advised daily amount, not three litres. Wholewheat bread and cereals and bananas are also what help me in that department.

    The PPI I was on, lasoprazole, made my throat and mouth intolerably dry - a known side-effect of it that affects some people - so I weaned off it and proceeded to deal with gastritis in the following ways:

    Several medium meals per day (I have seven, could do eight, one every two hours or bit longer), rather than fewer bigger ones, so that you don't overfill and stretch your stomach. Eat relaxed and chew well. Be sat upright for and after meals, not bent or slouching, so you don't squash your stomach and press its contents upwards.

    To give you an idea of the size of meal that is comfortable for me, an example would be a thick slice of wholewheat bread with a hardboiled egg in it, half a handfull of garden peas (another thing I found good for constipation), a small or half a banana and around 130 or so ml of water. Another example would be a bowl of cereal with a small banana in it too. Meals any bigger cause issues.

    We're all different and you might find some foods are ok or bad with you compared to other people, so it's a matter of experimentation and patience, but fried foods, high-fat foods, high-salt foods, carbonated drinks, caffeine, alcohol and chocolate can all impact on stomach and reflux troubles. Spicy and hot foods can also aggravate the trouble for some people. Minty foods relax the lower eosophageal muscle too, so they are bad. I even use a fruity toothpaste.

    Stress and excercise that affect the stomach are also to be avoided. Be as calm and stress-free as you can.

    Having your last meal a few hours before bed can prevent or lessen reflux at night, but you may find, as I did, that waiting to be too empty causes hunger discomfort and keeps you awake. Because of this I lie-down raised a bit on three pillows (on my right is best for me, maybe not for everyone) about an hour and a half to two hours after last meal, and this is much better.

    Another thing which has helped me greatly, is to not burp after about ten or so minutes after eating, as this can bring acid up and cause burn damage that then has to heal.

    The first thing that happened when I had to find an eating routine that helped instead of harmed, was that I lost weight, and over time I have added new foods to boost calorie intake, but this isn't fully achieved yet, so I'm also having nutrition drinks from a dietician. I can't eat meats or fish really, and being low in calories anyway, I have something with more calories, and have three or four eggs a day for some fat and protein, which the dietician said is fine, for, unless a person has an actual medical difficulty with cholesterol, the body adjusts its own production of cholesterol to keep the balance right when eating enough.

    I hope this helps in some way, but give it time if you try what I do. Three years and counting for me, and though not free of the troubles, I'm comparatively the best I've been right now, but still with variations through the days.

    Best wishes.

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  • Posted

    WOW, never seen a posting like this one.  Sorry to hear you are still having problem and Unfortunately I don't have any help to offer you.  In my case I'm writing because I believe I have LRP as well. But I sleep with no problem and just like a member said here I can't stay 4 hours without food because I won't be able to sleep.  So I normally sleep 2 hours after my last meal which is normally a cereal. My ENT is going to see me tomorrow and hopefully have an laryngoscopy done so I know if my Mild reflux is getting to my throat (or my lungs)  Now, I also have heaviness on the upper middle of my chest which creates breathing problems alone with my anxiety. I do not have any acid burning problem, just heaviness or pressure. Just like you I eat good, 500-600 calories is the highest of my meals and I have also seen a nutritionist because I wanted to gain some weight back.  Have lost 50 pounds the last 2 1/2 years and muscle mass 80% gone. ( yes, just like you I was into exercise and sports) I try walking and doing some light exercise but it doesn't make it any easier because of the chest pressure. Yes, been cleared by my Pulmo and Cardio.  And again, just like you I wake up feeling fine but it build's up during the day until 8PM or so when it goes down again when I lay back and take it easy.  Yes, I tried Gluten/Dairy free (still on it but just 70-80%).  Yes, no food allergens as well. ;-) Is hard to believe that just a mild reflux and gastritis will create so many problems.

     

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    • Posted

      Hello Papote, this pressure you mention reminds me how stress during the worst year of my life last year (non-medical issues) had my chest feeling pressured, and once the most stressful matters were resolved it started to ease until it stopped. I found that even being overly enthusiastic about something in conversation, which naturally involves the diaphram muscle, would worsen that pressure or tension, and make my stomach feel worse too. So I found that being calm and relaxed was very beneficial. Incidentally, my last meal is also a cereal one, the second of two I have each day.
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    • Posted

      In my case is in the middle of my upper chest just like heartburn without the heartburn and I also have hoarseness which leads me to believe is reflux/acid on my throat or maybe even on my lungs. This test the ENT can do shoudl be able to tell me if I have that problem.  In a way is like I want to have it so is clear how to deal with it. Sure, then start any period of testing to see what works best for you.  I had some bad health anxiety 1-2 years ago, but right now is pretty much under control. ;-)  Funny,  have 2 cereals daily as well.  No spicy or heavy meals but I do use protein suplements wit almond milk  in between meals. ;-)
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  • Posted

    btw, forgot to mention I also had my Gall bladder removed in 2015. Reason unknown besides being "0" respnsive so they took it out.   I had the symptms before that so is not the reason for my problem.
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  • Posted

    Thanks for all  your replies. I see that I am not the only one who desperately tries to figure this out. There are just too many factors which can cause this condition especially if you start looking and foods and nutrition. But I will try do make my meals a little smaller. Right now I am eating mostly 3-4 meals a day and I aim for 5-6 now.

    Furthermore here's a picture of my 24h-ph-metry. I looked at it yesterday and I got a little confused because there are not that many drops, especially during the night. Maybe some of you could have a look and share your opinion smile.

    http://www.pic-upload.de/view-29720608/ph-Metrie.jpg.html

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  • Posted

    Hi, Tobias. I just stublme upon your post... I cant belive you have this for 5 years.... My name is Ilvars I have almost same story... I got my acid reflux/lpr (doctors cant tell me what I have...) about 1,8 years ago after a strong virus/flu and sore troath (39 C temprature for one week) after that I have sore troath, very dry lips, post nasal drip, inflammation / the feeling of inflammation in my throat, increased amount of secretion/mucous, sometimes I get salty taste in back of troath...  Before I didnt had problems like that... btw Im 22 now  75 kg and 180 cm.... running almsot every day 4-8 km... going to gym every 2 or 3 days... I live in Latvia....

    I have tried different diets, test for allergyes (nothing), ppi dont work at all for me (tried 2 times), I tried antidepresenat for 30 days to clam the  injured nerve in throat known as laryngeal sensory neuropathy  (Amitriptyline 10mg 1x before bed) it got abit better after that... but i stop taking them because I could not get to my doctor and he told me to use it only for month...  drinking water 9,4 pH every day around 1 l -1,5l a day... the list gose on (probiotics, vitamins, yoga, massages, different troath sprays) and on... I tryed alot...

    Still nothing really works...  troath is still sore.... 

    Its strange because some day I have really bad sore troath for all day... and some day I dont have it at all... but I feel  inflammation in my throat.

    For me test got back like this-

    First gastroscopy without real medical finding - No hiatus hernia,no  sign/evidence gastritis, no Helicobacter pylori 

    - 24h-ph-metry (in nose  and in esophagus), no sign of relfux, 8 incident of relux for about longest 1,3 minute , DeMeester-Score 2.2 (doctor said its all okey with that...)

    - full blood test came back just perfect had it dont for 3 times in 2 years always the same

    -all test for infections or anyhitng other what can live in troath have been done... and they found nothing...

    Now on december 8 im going to get breath test for 3 hours....

    I dont know what to do... The doctor said it might be Autonomic Nervous System that got messed up after the virus... thats why some days I get reflux and some days I dont...  But I dont know what makes it go off every other day... sad

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