Responding to the 25 yr old. I started this blog because I suspect that LPR is more widespread than we realize and our collective experience is not "unique". People are walking around diagnoised incorrectly or told that its an emotional problem. If your in horrific pain, months on end, it can make you lose your grip on life. I felt like I was falling apart and worked so hard to keep my life going, knowing all the while something was really wrong, but I couldn't get anyone to believe me. My heart goes out to you being only 25 yrs old and having LPR. If my experience can help you a little, try to keep you diet as akaline as possible. Not easy. Very difficult. Go for a second opinion on the hernia/fundoplication. It may help some people but in my opinion, for "simple atypical LPR", that does not respond to PPIs, you should weigh very heavily about having a fundoplicaton to fix it. It helps only 50% of the patients. LPR is a strange anatomical problem that is caused by either a gas or micro spray from the stomach, that escapes because the LES and perhaps the UES have lost their function of closing off the stomach. Its a real scary illness to have as its simply not good to have any acid hitting your throat. Even weak periodic acid hitting the throat causes devasting pain in the throat and throughout the head area, cheeks, ears, and neck. What I am trying the last two months is mega doses of probiotics. My neighbor told me about it when I was searing to death. Remember, that every time your throat gets hit with acid, it takes awhile for it to heal. LPR is reflux in an upright position. The throat gets hit between a few times a day or all day long. Hydrocholric acid on the tender tissues of the throat takes forever to heal. It's a burn. My throat burning was 10x worse after the fundoplication. From what I understand my LES is still a "little" loose after the fundoplicaton. Something is escaping. I have managed to bring the pain level down by mega dosing on probiotics and recently my GI Dr went ahead and wrote me a prescription for a year for VSL #3 DS (sorry I may have incorrectly blogged "DL" instead of "DS" earlier on the probiotic name). I've been on it about 1 week and I have had a small incremental improvement. I've been supplementing with the previous over the counter probiotic, Bio-Kult, that I used before the VSL. I am thinking of increasing from two pkgs a day of the VSL to three, as the last few days I have pain behind my eyes, nose and ears. The ENT scoped me few weeks back and said my throat is still red but he sees an improvement. He told me I would have to learn to live with this and manage it. I'm scared. I know from my research that if the throat stays chronically inflamed, if there is a cure someday, the tissues may always stay inflamed. I'm scared about having this for the next 30 years. For me I'm focused on a cure. I'm going to give it my best efforts for awhile to see if I can control the acid burn on the throat with mega doses of probiotics but if it doesn't work then I'm going to ask to go to a major hospital center and see a specialist. I stongely believe that if a way can be found to effectively make the LES close and open more effectively it will solve the problem. But it is hard for research Drs to make head way on new therapies when there is alot more money to be made selling PPIs. Sad truth, but money drives medicine. What is so sad about having LPR is that your are healthy. You just have an anotomical problem with the LES closing tight and so far there are no real good methods for getting it to work better. The surgeries out there aren't terrible effective. Lets hope that the LINX Anti-Reflux will be the best method yet in "curing" this horrible problem. We have to hang for for several years of testing and to receive government approval on it. I hope I can hang on and deal with the pain until then. Please check in from time to time.
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Responding to the 25 yr old. I started this blog because I suspect that LPR is more widespread than we realize and our collective experience is not "unique". People are walking around diagnoised incorrectly or told that its an emotional problem. If your in horrific pain, months on end, it can make you lose your grip on life. I felt like I was falling apart and worked so hard to keep my life going, knowing all the while something was really wrong, but I couldn't get anyone to believe me. My heart goes out to you being only 25 yrs old and having LPR. If my experience can help you a little, try to keep you diet as akaline as possible. Not easy. Very difficult. Go for a second opinion on the hernia/fundoplication. It may help some people but in my opinion, for "simple atypical LPR", that does not respond to PPIs, you should weigh very heavily about having a fundoplicaton to fix it. It helps only 50% of the patients. LPR is a strange anatomical problem that is caused by either a gas or micro spray from the stomach, that escapes because the LES and perhaps the UES have lost their function of closing off the stomach. Its a real scary illness to have as its simply not good to have any acid hitting your throat. Even weak periodic acid hitting the throat causes devasting pain in the throat and throughout the head area, cheeks, ears, and neck. What I am trying the last two months is mega doses of probiotics. My neighbor told me about it when I was searing to death. Remember, that every time your throat gets hit with acid, it takes awhile for it to heal. LPR is reflux in an upright position. The throat gets hit between a few times a day or all day long. Hydrocholric acid on the tender tissues of the throat takes forever to heal. It's a burn. My throat burning was 10x worse after the fundoplication. From what I understand my LES is still a "little" loose after the fundoplicaton. Something is escaping. I have managed to bring the pain level down by mega dosing on probiotics and recently my GI Dr went ahead and wrote me a prescription for a year for VSL #3 DS (sorry I may have incorrectly blogged "DL" instead of "DS" earlier on the probiotic name). I've been on it about 1 week and I have had a small incremental improvement. I've been supplementing with the previous over the counter probiotic, Bio-Kult, that I used before the VSL. I am thinking of increasing from two pkgs a day of the VSL to three, as the last few days I have pain behind my eyes, nose and ears. The ENT scoped me few weeks back and said my throat is still red but he sees an improvement. He told me I would have to learn to live with this and manage it. I'm scared. I know from my research that if the throat stays chronically inflamed, if there is a cure someday, the tissues may always stay inflamed. I'm scared about having this for the next 30 years. For me I'm focused on a cure. I'm going to give it my best efforts for awhile to see if I can control the acid burn on the throat with mega doses of probiotics but if it doesn't work then I'm going to ask to go to a major hospital center and see a specialist. I stongely believe that if a way can be found to effectively make the LES close and open more effectively it will solve the problem. But it is hard for research Drs to make head way on new therapies when there is alot more money to be made selling PPIs. Sad truth, but money drives medicine. What is so sad about having LPR is that your are healthy. You just have an anotomical problem with the LES closing tight and so far there are no real good methods for getting it to work better. The surgeries out there aren't terrible effective. Lets hope that the LINX Anti-Reflux will be the best method yet in "curing" this horrible problem. We have to hang for for several years of testing and to receive government approval on it. I hope I can hang on and deal with the pain until then. Please check in from time to time.
December 18, 2010 - 5:38pmThis Comment
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