Lpr back and getting worse. What can I do?

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Hi there,

Until a few weeks ago I thought I was a success story here but I fear I'm a complete failure and I don't understand why or what is best to do. 

A few weeks ago my lpr symptoms started sneaking back despite my taking 40mg nexium and 40mg domperidone per day  and also Gaviscon Advance. 

My symptoms are lump in throat, horrendous burning mouth and horrendous chest pain.

I'm waiting on a ph test but that's in 6 weeks and I won't see the GI consultant for another couple of weeks after that. Each day seems to be a bit worse and now it's hurting to swallow,and food is getting stuck. I'll be honest, I'm terrified I've got something awful. The pain is constant, both in my mouth and throat and in my chest. I've been in floods of tears.

My gastroscopy at the end of April was clear apart from Barretts, the one I had before that when I had these symptoms ( before ppis) showed grade 2 oesophagitis and Barretts.

I have a gp appointment tomorrow and don't know what to do? Do I insist she sends me back to the GI as my symptoms have radically worsened? Is there any way of lessening the symptoms ( I have already made all the lifestyle mods and drink alkaline water)

I'm at a loss, just don't understand why this is happening to me. So scared my oesophagus is getting damaged again. I just don't know what to do. This condition is ruining my life. 

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  • Posted

    This may sound weird but maybe you could try cutting the amont of medicine in half for a few days to see if that helps,  You can have symptoms if you are to low on acid, that might be your problem
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    • Posted

      Hi Debra, would they be lpr symptoms? I just don't get heartburn. I know when I was on nothing I was in a terrible mess so the thought of cutting meds is scary, though I was on. 80mg of nexium per day and cut that in half with no problems. 

      I was told today by one of the colorectal surgeons that the reason so few docs want to be GI docs is that there is a really low level of patient satisfaction. That was an incredibly depressing thing to hear sad 

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    • Posted

      When I was taking 40mg of Prilosec I had more burping and a few times a day I had contents from my stomach shoot up into my mouth.  I am happy to say it has now been 7 days since I took a Prilosec, I slowly weened off of it, all is not perfect, but I do feel better.  Don't be afraid to try cutting back or even weening off it, remember you can always start taking the meds again.  I took the prilosec for 1 year.
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    • Posted

      Glad you're feeling a little better Debra.  What were your symptoms that led you to begin taking Prilosec?

      Bill (Minnesota, USA)

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    • Posted

      In Jan 2013 I went on a 10 day water fast (big mistake) I had nothing but water NO FOOD.  When I came off the fast with in 2 weeks I started having a hard time taking a deep breath and I felt bloated plus when I ate I felt full after a bite or 2 , I have mild asthma but knew this was not asthma.  I slowly got worse over the next few weeks,  I finally went to a doctor who said he thought I had a virus and gave me some antibiotics, which didn't do a thing. a few more weeks went by and I went to a different doctor, I went for lung function testing which came out fine and a ultrasound of my heart which said I had heart failure, I was so sick with worry meanwhile my breathing was still getting worse, so then I went to a heart doctor who tested me and said my heart was just fine, thank god. then i went to a pulminoligist who told me my lungs were fine he said I either had a vitamin def or I had silent reflux, so he sent me to a ENT.  The ENT stuck the scope down my throat and said it looked like I had silent reflux my throat was red. so until I started taking the Prilosec my only symptom was a difficult time getting a deep breath and bloating,  after I started taking Prilosec I started having mre symptoms more burping, feeling like something was trying to come up my throat and sometimes my throat would get  a little horse after eating or drinking certain foods, stuffy nose.  when I cut back my dosage I noticed some of the symptoms went away and others lessoned so I thought I would try taking even less medicine so I took the Prilosec evry other day and I noticed I felt even better, so I thought ok I will ween myself off this stuff so I stuck to the 1 pill every other day for a few weeks because I had heard how much more acid you produce after you been on these things for awhile.  Then after 3 weeks I started doing 1 pill every 3 days, I did that for over 1 week then I did 1 pill every 4 days I did that twice then I thought let me see if I can just quit but after 5 days my breathing got rough so I took a pill and that was the last pill I took, that was 8 days ago. Depending on what I eat or mainly drink I will have a harder time taking a deep breath for a short while, also I still drink coffee here or there it has been hard for me to stop, the coffee really bothers me more then other food or drink, since quiting the prilosec if I drink coffee I get a weird feeling like it is gonna come up my throat but doesn't so I am not going to have any for a few days.  I just hope my body goes back to producing what it should instead of extra.  The only thing I can figure is when I went on that fast my electrolites went to low and that is what caused this.  It has been a scarey time for sure, I pray to god to heal me completely and everyone that suffers from this
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    • Posted

      Wow, Debra - I hope you do find relief!  Do you mind me asking a few questions?  

      1. Why did you do the 10 day water fast?

      2. What antibiotics were you prescribed?

      3. Have you ever had traditional acid reflux (burning in chest)?

      4. Have you ever had an upper endoscopy?

      Regards,

      Bill

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    • Posted

      I did the 10 day water fast to improve my health, which I had some other issues, not related to this. I think the antibiotics I took was zithromax. No burning in the chest.  No Endoscopy either.  Years ago I had gerd or at least that is what I think it was, if i drank soda I would feel something coming up my throat, it would almost burn and then i would give a weird cough, that had to be 25 years ago.  I went on Richard simmons deal a meal diet at the time and that cured it, I never had it again.  But I must say the last few days with out taking the prilosec I can feel it trying to come up my throat it is hard to explain it feels real weird I don't like it, I drank some ginger tea tonight it appeared to work for a few minutes but that was it,  I didn't care much for how the tea felt going down.  Anyway I am wondering how long this is gonna last for, I am hoping and prying that I can soon be back to normal, to be able just to enjoy a cup of coffee with out having any problems
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    • Posted

      Hey Bill what is the significance of the endoscopy? Is it something to do with Sibo? I've had 2 the first abnormal, then after 2.5 months of treatment on ppis the second normal. Does that mean I do have lpr and not Sibo? 
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    • Posted

      Hi Stella - The significance of the endoscopy lies in the following explanation.  

       There are 2 types of LPR (in my opinion).  The first is caused by GERD (called GORD in the UK).  This is liquid acid reflux shooting up into the esophagus and sometimes up to the throat or near the throat.  This type of LPR responds to PPI's in most cases.  In addition this type of LPR will show positive results on a 24 hour pH/impedance test and an endoscopy will reveal esophagitis. The type of LPR I have is not related to traditional GERD where liquid acid reflux is getting up into my upper esophagus/throat.  

      If a person has a 24 hour pH/impedance test (I've had 5; 3 on PPI therapy, 2 off of therapy) and it comes back positive (i.e. showing that the person is refluxing....by the way, the diodes on the probes inserted through your nose down into your stomach go all the way from the top of the lower esophageal sphincter up near the throat area.  The diodes detect liquid reluxate only...not gaseous.  In addition for what it's worth, this test is NOT uncomfortable and getting the probe inserted through the nose is easy...as they numb your nose with gel/spray)...back to your question...if a person has a 24 hour pH/impedance test and it comes back positive, showing the person does have a reflux problem (remember it is measuring liquid reflux) and the person has an EGD and it shows esophagitis AND the person responds to PPI's...this should alleviate their throat symptoms.  So, the endoscopy is part of a series of tests that can help confirm that the LPR is due to GERD....i.e. liquid reflux. 

      If the person has an upper endoscopy and it is normal (i.e. no esophagitis) and the person has 24 hour pH/impedance tests and they also are normal and the person tries PPI's and they do not work...and yet the person has a red, inflammed voice box and typical LPR symptoms (hoarsness, sore throat, excess mucous in throat) then my hypothesis is that the LPR is gaseous, and is not detectable by 24 pH/impedance tests and will not injure the esophagus (the esophagus's tissue is much more resiliant to some amount of reflux...and can likely handle gaseous reflux without being damaged).  This type of LPR...gaseous LPR, again, according to my hypothesis is due to SIBO and needs to be treated differently than those with GERD/GORD.

      As a reminder this is only a hypothesis at this point, however; it's a hypothesis based on the fact that I have repsonded positively to antibiotics 3X over the last year with improved laryngeal symptoms of up to 60% for a 6-8 week period.  Time will tell as we, the patients work with our doctors to see if there is something to this. 

      I hope this was helpful. Have a great day Stella.

      Best regards,

      Bill (Minnesota, USA)

       

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    • Posted

      That's really interesting as I remember feeling like I was breathing acid, could feel it burning my lips. I've also felt a bubble of gas build up in my stomach and send burning particles all the way up my oesophagus.

      I was under the impression that the ph probe could pick up gas though? They are calling me this afternoon so I will ask. That is worrying, as I feel I have both. Would a nissen not sort out the problem then? 

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  • Posted

    Hi Stella, am so sorry this is how you feel now, but for what it is worth I would tend to think that April is quite recent and if they said there was nothing serious there then it won't change that quickly.

    Your symptoms are horrible but it does not mean they are life threatening. Very often people who get life threatening things have very few or no symptoms at all. How are you getting on with the alkaline water? Have you cut out fruit, yeast, sugar? Hve you cut out all refined and processed foods? Have you thought of how it might be some sort of parasite that needs to be killed where somethiing like garlic might help?> I am just saying things off the top of my head so please do not start worrying, just thinking aloud of possibilities. Don't forget that when doctors check you out they cannot see things like that.

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    • Posted

      Hi Carmel, thanks for the reply.  My diet is extremely limited, I've cut out so much sad 

      I just don't understand why this is happening when I was doing so well. I'm terrified of eating anything spicy ( like garlic) in case it makes things worse. I'm desperate for surgery but scared that the ph test won't come back positive and I'll be sentenced to a lifetime of feeling like this. I try and think positively about the gastroscopy but it's hard when you feel things getting worse every day. I'm not usually so down but I'm just in constant pain. Nothing stops my mouth burning or my throat hurting. It's so depressing. I have a 3 year old and it's affecting my relationship with him as I'm always in a bad mood. Horrible disease sad 

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  • Posted

    Dear Stella, Sorry to hear that matters are proving bothersome for you just now.  I wonder have you ever had any help with the anxiety that has been wrought by your underlying conditions?  Such might well distract the mind for a bit ... and that may well be a good thing as we all know how damaging anxiety can be in terms of enhancing very real symptoms.  Certainly it has been so for me.  I send all best wishes for a clearer and happier path for you soon.   
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    • Posted

      Thanks for that meunier, I have been seeing a psychologist, but it hasn't really helped. I think a big part of why I feel so down is that it has come back and I don't understand why. I like to label things or at least have a reason and no one can give me this. The gps look at you like you're mad. 

      I would just like to put an end to this and get on with my life, and for a couple of months I thought I was able to do that.

      Hopefully in a few months this will all be behind me and I will be able to offer support to people who are in the position I am now . 

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