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.
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
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.
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 
Hi Carmel, thanks for the reply. My diet is extremely limited, I've cut out so much
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
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.
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 .
Hi Stella, so sorry to hear that you're suffering like this. If things have got worse and food is sticking, then, obviously, something needs to be done. Write everything down before you see your GP - remind him/her about the Barretts - and also tell him/her about your fears and the way that the illness is affecting your life. Maybe you could take somebody along with you? I really hope that he/she is able to help you by referring you back to the GI or suggesting other ways to improve things. Let us know how you get on.
Hi Stella, I'm still experimenting with different solutions. Today, I stopped 40 mg. Omerprozol (which I think did more harm than good) and replaced it with 75 mg. Ranitidine 2 times a day. I also tried a an old Amish formula that I got from Caleb Treeze Organic Farms. I bought from _____. The label says it stops acid reflux in about 1 minute. So far so good. My wife has very bad leg cramps and she bought their stop leg cramp drink and, lo and behold, it works. She just reordered 6 bottles. So, I figured I'll try a bottle for $8. So far I only took 1 dose and I haven't had any bad symptoms in the last 8 hours hopefully there's something to it. I just joined the site today. Tomorrow I have 2 tests at Cleveland Clinic. One is the swallow test and something else involving a fluroscope. Last week I had the PH test. I had an endoscopy last month. I saw their ENT 2 weeks ago. They're putting me through the paces. So, hopefully there'll be some good input over the next couple of weeks. I'll post results and suggestions from Cleveland Clinic Doc's.
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My heavens that's a lot to cram in during a 10 minute (if you are lucky) session. At my GP Surgery there are big signs dotted throughout the building that you can 'only speak about one issue per appointment'. If you want to speak about seemingly varied symptoms you have to book a session per ... and the waiting times that therein are applied. As a result it might well be a lifetime's spin ... if you were, of course, to keep strictly to the system. No wonder so many people end up in A&E. Can ANYONE (short of the PM) be surprised?
Will do Rosie. Luckily it's a young doctor and she's been really good in the past ( not jaded yet). I'm completely sick of this. Unfortunately my GI doc is rubbish - " yes, you have Barretts, but I don't think it's significant so I don't think I need to monitor it" ... What?!
Hi Jay, yes please let us know how your tests have gone. I was thinking of asking about fluoroscopy as it detects bile and I think that that is my problem. It will be interesting to see how you get on. Fingers crossed for you
Have you been diagnosed with Pre Barretts? What tests have you had?
Hi Stella
I completely understand your anxiety and your desperation but I hope to give you at least one tip for your tongue burning sensation. A lack of Vitamin B12 can cause the tongue burning. I do not take Vit B12 all the time because you can build it up fairly quickly and so I will take it for about 2 weeks or so. My reminder to take B12 is when I feel my tongue burning and it disappears after about 3 days or so of starting the supplement. Your pee turns a fluorescent yellow when you take B12 but this is normal. You can replenish your body fairly quickly with B12 so take it for about 2/3 weeks, stay off for a couple of weeks and back on again. Hope this helps if your issue is related to a lack of the vitamin.
Good luck with your other symptoms and it seems that this is not an easy fix and may take a number of lifestyle modifications and a ton of perseverence.
Also you ask whether you may be able to get hydrogen breath tests on the NHS and I just googled for it and it seems that it is available. If your GP or gastro doc does not send you for one then perhaps you can find a private practioner. I went to a nutritionist across 3 days through my private cover at £150 per test which is steep if I had to pay for it (I do eventually pay for it through my premiums) but it may be cheaper elsewhere as I went to Harley Street. I think it is definintely worthwhile as it does give you the intelligence of whether you have 1, small Intestinal bacterial overgrowth which can cause a multitude of gastro and intestinal issues and which supposedly is also easy to bring to balance with Rifaximin (not Metrinazadole what my doc first prescribed me - Thanks to Bills tip); 2, whether you are fructose intolerant which is present in a good deal of our foods; and 3, whether you are lactose intolerant.
I was diagnosed with SIBO and lactose intolerant which could be due to the SIBO. I am due to start my antibiotics prescribed for 10 days with a lactose free diet recommended for at least 40 days to bring my digestion levels to its optimum best after which I will be able to digest lactose products.
So please follow the hydrogen breath testing protocol - insist if need be with your gp that youd like to be able to eliminate the food stuffs you may be allergic to and may be compounding your current situation - as it reveals much about you digestion condition.
Best of luck and better health wishes to you and other fellow sufferers.
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.
Glad you're feeling a little better Debra. What were your symptoms that led you to begin taking Prilosec?
Bill (Minnesota, USA)
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
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
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
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?