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View Full Version : My last safety net is gone; just proved my illness today ;(



Orange Lightning
02-05-13, 16:13
Ohhhhhh nooooooooooooooooooooo!! I don't know what to do anymore!! I just got my test results back for Laryngopharyngeal Reflux (LPR). It was a rapid spit test where 3 samples of salvia are checked for a stomach enzyme called Pepsin. That enzyme really shouldn't be in the throat, and if it is picked up then it causes post nasal drip, coughing, throat clearing, throat tightness, hoarseness and worst of all a massive increase in the chance of cancer. And guess what? One of my samples really did have pepsin in it. I contacted the person who checked it, and he said while my pepsin level is fairly low, it shouldn't even be present at all. I now have "definitive proof of my reflux." None of the treatments I've ever taken have worked on it in the past though, so I can't expect them to do so now. What the hell am I supposed to do now?! LPR has taken away my quality of life, and now I know for sure I have it, I can no longer believe anxiety to be the cause of my problems.

Freaked
02-05-13, 16:41
I just got a slightly worrying test result too, though for a completely different thing, so I know how you feel atm. I've had vomiting and reflux problems my whole life (I'm the only person I know who had heartburn at age four) and when they did a scope one time, not even during a flare-up, they said my stomach lining was abnormally inflamed and sent me merrily on my way with some of those losec tablets. Come to think of it, I'm probably at increased risk for cancer too, though atm I don't have the mental space to worry about something else (that and I'm 21).

At least now you know you have something (and something not imminently life-threatening), maybe you can find the proper treatment? Have the doctors suggested anything new? If not, I'd push them to if it's really affecting you. I assume you've tried the tablets like losec, losamel and pantoloc to stop your stomach producing so much acid. Do your know if your problem is actually over production of acid or is it mechanical to do with your digestive tract letting too much acid up?

Orange Lightning
02-05-13, 16:51
I just got a slightly worrying test result too, though for a completely different thing, so I know how you feel atm. I've had vomiting and reflux problems my whole life (I'm the only person I know who had heartburn at age four) and when they did a scope one time, not even during a flare-up, they said my stomach lining was abnormally inflamed and sent me merrily on my way with some of those losec tablets. Come to think of it, I'm probably at increased risk for cancer too, though atm I don't have the mental space to worry about something else (that and I'm 21).

At least now you know you have something (and something not imminently life-threatening), maybe you can find the proper treatment? Have the doctors suggested anything new? If not, I'd push them to if it's really affecting you. I assume you've tried the tablets like losec, losamel and pantoloc to stop your stomach producing so much acid. Do your know if your problem is actually over production of acid or is it mechanical to do with your digestive tract letting too much acid up?

Most doctors don't know about LPR. Either that or they don't believe it. Unfortuantly LPR cannot be cured; PPIs and other drugs usually reserved for GERD do nothing, and lifestyle changes don't work for everyone. Even surgery doesn't work and sometimes makes it worse. Worse still, there's no drug to limit pepsin, and it's the sole cause behind esophageal cancer. In other words, if the cancer doesn't kill me the pain the LPR causes me every day will. :( Currently I'm not sure why the reflux is occuring, although I assume it's not overproduction of acid as I don't get heartburn.

bernie1977
02-05-13, 20:13
I have similar symptoms to you Orange, my Doctor said acid reflux and gave me Lansaprazole. They did nothing so he sent me for an endoscopy which I couldn't have done despite spray and sedation which did nothing. I have really bad gag reflex and I was having a panic attack so I freaked out and started choking when he tried to put the scope down. This was four years ago and I've been on omeprazole since. They don't stop the acid, every morning when I wake its there. I have my bed elevated and it doesn't seem to help, I avoid all potential food and drink triggers and still wake up with acid every morning and get nasal drip throughout the day which I think is caused by the acid getting my sinuses.

I don't see the point of taking PPI's as they do nothing and the press about long term use of them is worrying so I'm currently tapering myself off them.

Are you under a consultant at the hospital Orange Lightening as they might be more informed than your GP. GPs seem too ready to prescribe PPIs and they don't warn how difficult it can be to stop taking them after long term use as they cause bad rebound acid. Thy also don't warn about the problems long term use can cause and they also don't proper diagnose before saying you have GERD.

LittleMissSleepy
11-05-13, 22:03
Hello, where did you get your peptest from ? I'm un-dx LPR also.