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

Hi, Jamie,

Have you had any luck with these remedies? I would be very interested to know.

thanks

Hi JPT,

I know this was written nearly a year ago but I'm hoping this will get to you and that you'll be able to answer my question. I have lpr, post nasal drip, incredibly sore mouth and lump in the throat. I took ppis and for a while it was great, then back with a bang I have made all of the lifestyle modifications, apart from the alkaline water. Here in the UK the highest ph water I can find is 8.2. I read Dr koufmann's paper and she mentions 'naturally alkaline water'. Would this be different from water from an Alkapod or other such device? I don't want to spend money on something that's not going to work. What are your thoughts on this , or do you know of anyone using something like an Alkapod who has had good results? I'm desperate to get out of this trap  

Hi Stella,

If you are on Facebook look up refluxhelp and go to the justpassingthrough page set up by JPT.  Lots of info there and JPT has responded promptly to me when I sent a message.  good luck

Thanks Jill, will do  

Hello, Am new to all this but devouring information at the rateof knots.

My symptoms were stomach cramps and aches, lots of headaches, sometimes sinus and blocked ear/glue ear.  Have tried ppis, now  the other type which for a while helped a lot.  Am happy to do whatever it takes to get better.  No faith in doctors, they all say different things and whenever you mention ears or nose they say its impossible it is related to stomach. Yet I had stomach ulcers just a year ago!  Which was how it all started. I dont find that I notice it getting worse if I eat tomatoes etc.

I sleep with my head raised and sleep fine but  often wake witha bad headache and stomach then it seems to be better during the day but not ok.  Am looking into the thing about acid and ph levels and this water etc right now having read some of these posts. Thank you all for this information. Please write and tell me how you are getting on and any thoughts.

Your not alone in having no faith in doctors.  I've suffered from what I believe to be LPR symtoms for 2 years now.  2 endoscopies 1st severe inflammation, 2nd last year mild inflammation.  Hospital told me there was nothing wrong and discharged me.  I went back to GP and got re-referred so that I can get more tests.  Saw consultant yesterday, mentioned that all my symptoms feel like LPR to which he said "What is LPR?"  I told him about my symtoms again and how it fits with silent reflux etc and he just said it must be stress as endoscopy results fine.  I said this was nonsense as LPR often doesn't show up on an endoscopy.  Not helpful when consultant doesn't even recognise silent reflux/LPR as a condition in it's own right.  Told him I've been following a strict low acid diet and drinking alkaline water, no caffeine, limited chocolate and alcohol for 8 weeks and seen slight improvement in symtoms ie not constantly throat clearing as much and post nasal drip only bad 1st thing.  Told him I have no issues when lying down.  He just didn't want to believe me.  He's put me on list for a barium meal and manometry test procedures but as he fails to recognise that it could be my throat that is the issue I don't hold my breath at getting answers.  I will continue to stick to the low acid diet until then as no GP meds have made any difference.

Hi Purdie How are you getting on with things? It is so infuriating when you know more than the so called professional who is being paid to help you. And I get sick of teling people that the doctor has made a mistake or doesnt understand. Most people think you must be wrong because all doctors are Gods and never make a mistake. If you say you have stopped taking a medication because of the horrid side effects or lessened the dose to get less side effects the first thing they say is "of course you asked your doctor if that was alright " or"OF COURSE this was the doctors idea". As if none of us can think for ourselves and we need permission to feel ok.

Hi Purdie How are you getting on with things? It is so infuriating when you know more than the so called professional who is being paid to help you. And I get sick of teling people that the doctor has made a mistake or doesnt understand. Most people think you must be wrong because all doctors are Gods and never make a mistake. If you say you have stopped taking a medication because of the horrid side effects or lessened the dose to get less side effects the first thing they say is "of course you asked your doctor if that was alright " or"OF COURSE this was the doctors idea". As if none of us can think for ourselves and we need permission to feel ok.

Hi Purdie How are you getting on with things? It is so infuriating when you know more than the so called professional who is being paid to help you. And I get sick of teling people that the doctor has made a mistake or doesnt understand. Most people think you must be wrong because all doctors are Gods and never make a mistake. If you say you have stopped taking a medication because of the horrid side effects or lessened the dose to get less side effects the first thing they say is "of course you asked your doctor if that was alright " or"OF COURSE this was the doctors idea". As if none of us can think for ourselves and we need permission to feel ok

Hi Carmel, I'm doing OK although no thanks to any Drs.  I can't believe I've had this for 2.5 years with symptoms there throughout waking hours and I'm still being fobbed off with "it's all in your head and stress related".  I have a barium swallow on 2 Sept then they have said they will consider acid testing depending on results of that but to be honest I've had far more success with just sticking to an alkaline diet than anything the Drs have suggested up uptil now.  It's not gone but I would say after 3 months on the diet it's 60% better. Of course I've had to make major lifestyle changes to get it more under control and my once active social life has ended as going to pubs and out for meals is difficult living with this condition if you want to see improvement the diet is very strict.  I wouldn't mind if I thought it would cure it but I suspect as soon as I start eating acidic things or drinking alcohol again I'll be back to square one.  I have already suffered in the past from depression and trying to keep busy to avoid that again but it's difficult when you can't do the things you enjoy anymore and even exercise is limited to low impact stuff as I've found walking (a hobby of mine) has become difficult as on hills I find it difficult to breathe with excess phlegm and muscle spasms in the throat but as my Dr at hospital didn't even recognise LPR or silent reflux as a genuine illness in it's own right, I feel I have no option but to stick with the diet given it's the only positive thing that has shown some improvement.

I personally found PPIs didn't help at all and in fact caused other problems as I have fibryomyalgia (FMS) and the PPI meds deplete magnesium and calcium which had a knock on effect with my fms making it more chronic.  Pain killers like Tramadol also help my fms but I believe they can weaken the esophagus valves so I either live with my throat discomfort or my FMS pain, i can't seem to to find anything that aids both.  How are you getting on?

Hi Purdie. I didnt know that tramadol can weaken the valves, when I mention things like this to a doctor they look all puzzled or say it is nonsense. Have taken tramadol and surmontil for the headaches. It is only when I am on medication that my headaches and cough go away. Then I get horrile side effects which are sometimes worse.

If it was just about magnesium and calcium I would take some vitamin and mineral tablets but it is far more complicated isnt it. What are you taking now if anything? How is the diet going? Have thought of drinking alkaline water

and considering trying melatonin but as you know it is easy to rush out and get these things and it works out very expensive, then when they dont help you feel all deflated and dispirited and your bank balance is lower too.

I've spent a fortune on various supplements over the last couple of years after getting no-where with Drs.  Not sure which are helping or if it's just the diet alone, my throat clearing has definately decreased but I still have the constant mucus in throat.  My post nasal drip which has been bad every morning for last couple years seems to have finally dried up last couple weeks after taking sinus rinse every morning using alkaline water for nearly 3 months. 

My Dr gives me tramadol for pain relief for FMS and arthiritis but hasn't said anything about it being a problem for my throat, I found it online somewhere that opiods and things like diazepam can actually make things worse by weakening the valves - think it may have been through JBs page but I need it for pain so continue to take it occassionally as I don't even know if it's a motility issue with my esophagus but my reckoning is after 2+ years of refluxing it has bound to have done some damage to my esophagus although when I suggested this to the Dr and hospital they didn't agree and suspected it was all in my head.

I have used melatonin in the past as a sleep aid but never tried it longer term for LPR although I believe some have had some success with it.  I asked my Dr for pregablin (Lyrica) as I'd read it could be nerve damage of the esophagus from long-term reflux but Dr said she couldn't give me any new meds to try until I'd had a diagnosis and given I've been waiting 2.5 years so far I can't see a diagnosis any time soon especially when Drs don't acknowledge LPR as a medical condition where I live.  I tried to convince my Dr based on the fact that it's also an approved drug in the USA for fibryomyaglia as well and suggested I could try that rather than tramadol and see if it made any difference as LPR is effectively FMS of the throat but she said it was only in severe cases they give it out on the NHS and tramadol is the medication approved for FMS but it is only a pain killer so I can't even find out if it could be a suitable drug to overcome my difficulties hence why I'm forced to just stick to a strict diet and have lost a lot of friends as I don't go out socialising much any more.

It's frustrating as you say that we know more about our condition and possible cures but the NHS won't even entertain these possibilities or try me on anything different that has been approved elsewhere.

Hi again Purdie. I can sense your frustration and it is obvious you have really looked into this and put a lot of timeand effort into this so why on earth can't doctors recognise this too? I meet so many people who just blindly follow their doctor with no thought. Even if the doctor tells them to take something that makes them feel awful.

I have been taking cimetidine and for the first few months it was fantastic. I was given it for my stomach ache but it cleared up my ears, nose and headaches and then I wanted to continue with it and researched it and connected it.

But now if I take it I can still cough, sometimes more,

and I get side effects like feeling worn out and weak, pressure in the ears and head - as though I am three times my age - where every physical thing is a big effort, a lot of back ache etc. I have not tried the diet because I love my food and would rather find another way. Food is one of my main pleasures. The idea of melatonin, alkaline water or something else suits me because I can still eat what I like, but maybe that is being rather naive and idealistic and living in a dream world. At the moment I have cut down my cimetidine and try to go a few days at least without it when I can and take half a dose when I can too. I also take two multi vitamin/mineral tablets, 6 omega 3s and lots of live yhoghurt or biotics. It does not matter what food I eat I dont get heart burn or indigestion or anything. With me it is mostly a cough and trouble breathing/wheezing.

Then if left it goes to my ears and they get blocked and feel like they are full of water, and bad headaches. I really believe it is important to make sure the gut flora is well balanced or at least has more good than bad, especialy if it is coming up into our head. It is bad enugh if good bacteria come up without bad ones coming up. When my gut flora was knocked for six a few years ago I could hardly move at all, my memory went and had bad brain fog and concentration and could not even go up stairs to go to bed , yet the doctor would not accept I had a problem (I was 54). He said it was normal to get such problems as you age. Right. So it is normal for a person of 54 to suddenly be unable to move or do things after a long course of antibiotics? Dream on. This is when I researched all about the biotics and flora and put it right with them.

If I don't follow the diet restrictions, my LPR gets hopelessly out of control.  I'm thinking if you really want to beat this, you'll need to change your diet.  I actually like the food so I don't find it difficult anymore.

Susan

I suppose you get used to that food and stop missing the other food. Have never been a great lover of sweet things, chocolate, ice cream etc but would very much miss other things.

I don't miss food when I'm at home now, I've gotten used to the diet and what I can and can't eat, my boyfriend is wheat intolerant and I avoid dairy as find it makes the phegm worse so it's a challenge to find things we can both eat but we live on vegetable stews, rice and veg stir frys and have grilled fish and chicken mostly with red meat once a week only.   It's the weekends I find it the most difficult when I want to go out with my friends for a few drinks or a meal out and can't do this often as it has a negative effect on my progress.  I really miss chocolate though!  Tomatoes, garlic, ginger and yoghurt don't seem to affect me but I believe they can be triggers with others.  To be honest I didn't want to be on a restrictive diet either but I couldn't continue living the way I was, it was agony, muscle spasms, constant throat clearing the whole time, pain, throat tightness and post nasal drip not to mention the coughing and breathing issues and I couldn't exercise without struggling for breath.  By sticking with the diet most of the time it's 60-70% more manageable and I'm back to doing a little bit of exercise mainly pilates and aquafit and some smaller low level walks although I do allow myself time off the diet when going on holidays/weekends away and still have the occassional pint of guiness at weekends but avoid gassy drinks all together now.

Hello carmel83758, have you ever considered an overgrowth of Candida albicans could be causing all your symptoms, I went on Erica Whites anti 

candida diet a few years ago and I felt really well on it, Sarah13796

Hi Purdie. It must be hard, especially when going out, and I suppose a lot of pepole dont understand. I dont drink alcohol at all and havent for years. But myweakness is cheese. The usual triggers do not trigger anythign for me.

Like you I cannot have gassy drinks.