LPR disproven; so why do I still have it?!

What diets have you been on and for how long? I am on Dr Koufman's reflux drop the acid diet. The first 2 weeks I felt no significant difference so stuck with it for a month before going to maintenance. I'm now 6 weeks in and still have all the symptoms but they just feel slightly more manageable now. I have heard from others on another posting on this site that it can take 6 months to a year before significant changes are felt on the diet. My post nasal drip has signficantly reduced using sinus rinses twice a day, the severe breathing problems with throat spasms which twice resulted in me going to A&E seem to have calmed down a bit but I still have the throat phegm, constant swallowing, and extremely tight feeling and globus in my neck.

I have gotten knowwhere with GPs, ENT or GI departments. Endoscopies showed mild inflammation but I was told there was nothing more they could do. Meds haven't helped, some have made the problem much worse. I accept now that this will probably be a life long condition but it's beginning to feel like there is a small improvement. The first month on the diet was extremely difficult, I felt worse before I felt slightly better.

I also found that the first 1.5 years it seriously affected my health and caused depression as the things I enjoy in life (mainly hill walking), I could do no more. Even a short flat walk had me gasping for breathe so I gave up on exercise and ate more as eating is the only thing that seems to help. As a result I put on lots of weight which I've now been advised to lose as being overweight makes reflux worse.

I am now trying to get back to some kind of life. I have had a lot of time off work. Thankfully my Manager is understanding but it won't be accepted indefinately. I have taken up swimming, pilates and tai chi, all low impact exercises which also seem to help a little with my breathing and take my mind off the pain and discomfort for a short while. I also find the steam room helps after a swim.

Other things that help make it manageable are chewing on soda gum, sucking manuka honey lozenges and taking 2 drinks of wheatgrass a day along with my alkaline water. I continue using alkaline water not only to drink but to gargle and to spray around my airways. Gaviscon Advance helps a little but not much. DGL Liquorice is supposedly good for LPR but I haven't had much benefit from it.

There appears to be no quick fix but I live in hope that things will become easier.

I didn't get the peptest as struggle to get the saliva up to take a sample so felt it may end up being negative anyway but going by my symptoms it definately feels like LPR despite having had no diagnosis.

If your symptoms are not LPR, they could be allergies. Some allergies are not detected by blood tests but necessitate other tests to be detected. Maybe a good allergologist could help you?

If it is LPR, the low-acid diet takes time to be effective, 2-3 months from what I read from other people experience. How long and which diet did you try?

Even if stress is not the cause, it might be good to talk to somebody to get some support to go through this and discuss what to do.

You have my sympathies completely (Please read my first post from last week) My symptoms are exactly the same as yours. I have suffered for nearly 2 years and feel like I am getting worse. My doctors are fed up with me, (and I think my consultant is also). I get told my symptoms are not very specific so no surgery. No one seems to understand how much this affects our lives. It's a bit weird that we all have the same symptoms even though we are told "it's in our heads". Mine got worse after having surgery last year. Try looking up "irritated vagus nerve" as my Dr thinks it could be some nerve problems. This nerve controls a lot of things in your body (breathing, heart etc). He has prescribed Elavil (amitriptyline) which I think Jamie Koufman mentions somewhere. We need to all keep plodding on and try and help each other by posting any postives

Hugs to you all

Sorry to read about your health issues, I have also been suffering from the symptoms you mentioned for quite some time now without any relief. Done every test & seen every doctor with loads of treatments including LPR but still no luck.

I also thought that it might be caused by stress, how did you manage to figure out this cannot be the cause? My work is quite stressful and do a lot speaking during the day that does not help either.

I can really sympathise - I can tick off all the things you have tried & yup - no effect. The ENT said my throat was a little swollen and she asked if I had digestive problems of any sort. I told her I had been diagnosed with gastroparesis (slow emptying of the stomach) 4 years ago. She said that means I must have LPR and prescribed PPI's. I did not take them because further research indicated that PPI's should never be given to people with gastroparesis as it will aggravate it. Back to the gastroenterologist - who shrugged his shoulders and said I needed to decide which was the lesser of the 2 evils. I was about to walk out but I said I had lost too much weight and am unable to put it back on again. This made him decide to do another gastroscopy - all clear - no oesophagitis, no longer signs of gastroparesis, the UES and LES looked good, said my stomach was as healthy looking as he has ever seen. I said what about the symptoms and he said ignore them. I take no medication other than some vitamins. (As I do stress relatively easily, I take vitamin B1 in quite big doses - wonderful for anxiety) Things that do seem to aggravate the throat mucus are dairy, especially milk, chocolate, alcohol, sugar and definitely high fibre carbohydrates. If I stick to the Fast Tract diet, my symptoms definitely improve. I find it hard to do because a lot of the food listed as being "good" on the diet, I regard as "junk food" eg white bread. However there is no doubt about it - white English muffins cause no symptoms whilst wholemeal muffins have an almost immediate negative effect. If I eat mostly protein, I definitely get better. I know a lot of LPR sufferers on other forums have found that this diet has definitely shown more promise than the Koufman low acid one.

Re PPI's and other medications, if you have read the theory behind the fast tract diet, you will know it is based on the assumption that the reflux is cause by fermentation of undigested carbohydrates. If this is so, then PPI's would only make it worse as less acid will aggravate the situation. As Mirtazapine (of which I have not heard of before) is an anti-depressant and treatment for PTSD, I guess it may have a calming effect. This sort of correlates with the anxiety reduction I obtain from B1. I know you don't feel that stress is a contributing factor - I however believe that stress and anxiety is a contributing factor in just about every illness there is. For me, if I am too busy to think about how bad I feel, I can almost feel fine. If I am not busy and think about how rotten I feel, I can easily believe I must be dying.

It appears no GPs or specialists anywhere in the world have a clue about LPR and if they don't suffer from it themselves, they have no understanding of what we are going through. Sorry I can't be of much help either, other than to say I have found some relief with keeping calm and eliminating certain carbohydrates as per the Fast Tract diet.

Are you still around?

DO YOU THINK THAT MAYBE STRESS MAKES IT WORSE?

Keep in touch

Hugs