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  • A last point of view for the time being: LPR being recently revised as red herring

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    Old 12-11-2011, 01:18 AM   #16
    eew
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Very good Brien. Please let me know if you feel better after trying them both. Try to take a Vit D test right away. Ask your primary Dr. to have your lab work waiting for you so you can drop in to the lab and take the test without a DR appt. Until I get my Vit D score up to 80 I plan to ask for a test every 3 months. My original score in July 2011 was 25 (and I had been in the sun due to a new pool and the grandchildren coming over from April 2011-July 2011. My family was surprised that I had a sun tan as I have always avoided the sun. I wonder what my Vit D score was prior to April 2011. I suspect it was lower than 25.) I took a Vit D retest in Oct and was up to 44. Still have a ways to go to get to a Vit D score of 80. I'm keeping my fingers crossed that I continue to improve. Yes, lots of articles to read on Vit D and what wonderful things it does in our bodies. I think of all the people suffering with chronic problems that are probably related to Vit D deficiency and all the suffering. It is why I continue to return to these blogs to share. I've read that babies, young children, young adults have LPR and suffer so much. Could there be a correlation with low levels of Vit D? I've read of people being diagnosed with asthama for decades and it turns out many of them have LPR. From what I understand, the vapor/gas/droplets get in the lungs, in the ears etc. Some people have the acid go into their mouths and burn their tongues. My ENT and dentist check my mouth every time I go in to see if the acid is going further. My acid burn marks go up to my molars so its scary to see this. Many people have it go into their ears and complain of ear aches. Its real important to get find a Dr to confirm LPR. Once you know what you have then you can make decisions. I followed the Drs directions until they gave up on me this last summer as they had nothing more they could do to help me. The PPIs and surgery made me worse. But in light of the Vit D working, it would make sense that nothing worked for me. Because it was a Vit D that I was lacking! Well at least its my hunch based on how I now feel. Get well soon.

     
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    Old 12-11-2011, 02:03 AM   #17
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Thanks for your reply. It is interesting about my beach time - I felt great and so relaxed. So I ask myself is it that I am away from the stresses, or the fact I have company and am busy. I was in a good place emotionally while there though. I have 5 and a half weeks out of the office coming up, so we'll see if the stress free life helps.

    While I've had this for a fair few years now, it does seem funny to me it got worse after the bronchitis, and I could see why my Dr thought laryngitis was a possibility.

    The tongue massage sounded interesting. Might be easier to get someone else to do it for you My mouth and throat so often feels irritated and dry just as you describe. When I've mentioned that to health professionals, they acknowledge then prompty ignore it.

    No plans for the check up yet, but if the Omezaparole doesn't sort it I"m guessing that will be the next step. Something to look forward to.

    I did buy a juicer as I'm changing my lifestyle, and been told carrot juice is a great soothing healer on the system. We clutch at anything we think may help. I"ll let you know if it does help.

    Jude

     
    Old 12-11-2011, 09:18 AM   #18
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    If you feel better on the beach...it could be Vit D you get from sunshine. My Drs also kept blaming LPR on stress. They even convinced me it was. But I knew I wasn't stressed. I'm a very happy person. For me that was totally not what it was. It plain and simple was the UES/LES not closing tight enough to close off the stomach acid. Vit D strengthens muscles. Vit D has given me so much relief. There are other more subtle things that have in improved in my health since I started it. I use to have so much bone pain. All gone. My knees hurt. All gone. I feel 20 years younger. If at all possible get a Vit D test before you go on vacation. Try to get a bench mark score to see where your at. Research Vit D and omega fish oil to understand what it does in your body. It pointed me in the direction that I reasoned it could provide me some relief from horrible LPR throat pain. I wish I had known about both Vit D and fish oil before I took the PPIs and had surgery. Vit D and fish oil would have been worth trying first before going to dangerous PPIs and risky surgery. Its been over 5 months since I started Vit D and fish oil and I'm still improving slow but steady. If after you take a Vit D lab test and you go on the beach and feel better, it could be that your natural Vit D sun levels improved your LPR. I look forward to hearing how everyone on this blog string is doing over time. I have you all listed so that any email you send will generate a email to alert me that you have written.

     
    Old 12-11-2011, 06:57 PM   #19
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Eew, I'm curious about your vit D -- I suppose a nutrition panel would reveal which "D" along with other vitamins a person could be lacking or low, I had been thinking of getting one anyway.... but I wonder did you mean specifically Vit D3 that helped you? Or just 'vitamin D?'

    Thanks -- Brien

     
    Old 12-11-2011, 11:40 PM   #20
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Thanks EEW for your thoughts. I've been taking fish oil in tablet form for years, and last 2 months changed to a liquid one with Vit D3 in it, and my reflux has been worse if anything. But coming into summer here, so no shortage of sun, and I need to make sure I go get some morning sunshine on my body. Nothing quite like the real thing is there.

    I do notice my reflux gets worse when stressed. I'm of a happy dispostion as well, but I'm also a rescuer who always needs to make sure others are okay, and a perfectionist with my work, so do load stress and anxiety upon myself. Yes, I'm my own worst enemy.

    I went to the health shop today and got some better digestive enzymes (I hope!) and we'll see how they go. I also lack sleep, don't most women over 55! She did suggest i take the apple cider vinegar directly before eating, and have it straight, as it tightens the sphincters up. So can try that I suppose. She also sugested a spoonful of good manuka honey half an hour or so before breakfast.

    Now I'm thinking -- manuka honey, ACV, carrot juice, digestive enzymes, fish oil, haha when will I get time to do anything else - One thing I can tell you is that the Ompaezarole doesn't seem to be doing a darn thing. The burning isn't really bad, more annoying and it alternates between palate and throat. If that would go I can deal with the rest. I'll say it again - still seems weird it's after the bronchitis it has come on. Believe me when I was full of muck I would've done a 'dirty old man' proud! No offence to any men of course.

    Take care

    Jude

     
    Old 12-12-2011, 12:09 AM   #21
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Brien: when I asked my primary for a Vit D test, on a hunch I had, my vitamin D score was 25. It was on the low side. I had to email my primary to ask what I should do. She recommended I take 2,000 IU of Vit D for the rest of my life. I did my own research and found that because of my age and my weight that I should be taking more Vit D. I read that Vitamin D3 drops is the best form to take. I took 6,000 IU for 3 months. Then I had my Vit D retested and the score was 44. So I have cut back to 4,000 IU and will retest in Feb 2012 an see what my score is. My goal is getting to a score 80. I continue to improve every week/month since I started Vit D.

     
    Old 12-12-2011, 12:30 AM   #22
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    eew, interesting about yout VIt D test. When I was at the health shop today I mentioned it to the girl there. She said a Dr would never do it here as it costs too much money to test for it. She said I could buy some and start taking it, but I didn't think that very responsible without knowing what it is.

    Jude

     
    Old 12-12-2011, 12:50 AM   #23
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Yes, Jude, I do understand. I went through all the things you are trying. Vinegar (it burnt me to death!) and honey and proton inhibitors of all kinds. Nothing worked for me. It was a night mare, the pain was excruciating. The LPR, I had, burnt right through the throat nerves and I had severe pain constantly for two years throughout my head, throat, ears & neck. I had big balls in my throat. I felt my life was over. I don't know how I was able to exist. Stumbling onto to Vit D was accidental. I was constantly researching and reading. When I read that Vit D strengthens muscles I wondered if it could help stengthen the esophigeal spinchters (the UES/LES). In my case it worked. When my last GI told me that I indeed had a vegal nerve problem but they didn't know what else to do for me and that I had to live with throat pain, I ran home and researched what help nerves heal. Fish oil kept coming up and it helped me. Between Vit D3 drops and omega fish oil I have reduced the severity of my pain so much and the bottom of my throat has healed. The top of the throat is still red and has the white opaque stuff, that is the tissue trying to protect itself from the acid vapor/gas/droplets. One of the things that gave me some relief in earlier months was mega doses of probiotics. When I told the ENT about taking extra probiotics she said that it was fine to take extra probitotics. It wouldn't hurt. I mega dosed on them and got 20% relief. I took 900 billion a day with no adverse affects. I read that in the days we foraged for food living in the forest it was nothing for us to take in 3 trillion bacteria on our food at a sitting. So its thought to be safe. On the issue of enzymes I tried them and they burnt me to death. In fact, even water burned me to death. I had to go to the grocery store and buy spring water as I couldn't drink tap water. I had the spring water tested and it has a PH of 8. I don't think my Drs fully appreciated what a night mare I was having. I still don't think they realize that severe LPR can literally give you a nervous break down as the pain is so unbearable. Its like burning to death only on the inside. The raw tissue is constantly awash in acid. I still have LPR but it is much less. The other day I went to a function with friends and my husband and the only thing to eat was lasagna (made with red sauce). I was frightened as I usually burn with tomatoe sauce of any kind. I took the leap and tried it and did ok. The salad had vinegar and I tried it and was ok. I've added little bit of meat and still have some reflux but doing better. Not burning like before. Its milder reflux. Try getting your Vit D levels checked. I'm just wondering if Vit D helps anyone else lessen the severity of LPR and what your bench mark Vit D score is before you start taking it.

     
    Old 12-12-2011, 12:59 AM   #24
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Just wanted to add my story of diagnosed-as-LPR-but-not-LPR in case anyone out there finds it useful.

    The TL;DR version is that I thought I had LPR for 4 months, turns out I simply wasn't drinking nearly enough water and had a dry/phlegmy throat.

    Now for the details: I had many standard LPR symptoms that started suddenly from no obvious single source (i.e. not after a long night of boozing or a URI). I didn't have all the LPR symptoms but the worst by far was a constant, painful burning in my throat.

    Other symptoms I had was the feeling of a lump in my throat, hoarseness, weak/cracking voice, too much mucus, funny taste in mouth, throat clearing, and some coughing. I definitely had no heartburn and no regurgitation but I should add that I mostly experienced 'globus' after coffee and/or alcohol, which I only indulged in for experimentation during those 4 months, good times.

    My doctor immediately thought it was acid reflux and put me on omeprazole which actually made things worse and gave me heartburn. I feel ridiculous writing that but I have only EVER experienced daily, chronic heartburn while on omeprazole. I wish I would have realized that it was the omeprazole causing the heartburn at this point rather than just my sore throat problems showing their true colors.

    I stuck with the omeprazole and had the dosage doubled when I told my doctor that my problems persisted, this improved the heartburn for a bit. I also got an endoscopy which showed mild irritation consistent with GERD, not too surprising since I was definitely feeling the heartburn at least once a day.

    I was feeling really depressed at this point since there was no relief from the powerful double dose of PPIs I was taking, and I could see no correlation between what I was eating and how bad my throat felt. In fact my list of "safe" foods kept changing and it seemed crazy that eating an apple on an empty stomach caused heartburn problems today when it didn't yesterday. I know the stomach is a mysterious beast and maybe there was a cumulative effect going on but I decided to quit the PPIs cold turkey, even though I've read that's frowned upon. To my relief the heartburn disappeared immediately but the throat problems persisted...

    Finally I booked an appointment with an ENT (had only seen a general practitioner and gastoenterologist prior to this) and he asked me how much water I was drinking a day as a standard list of questions. I said 2 glasses of water a day and he said that wasn't enough. Then in the nasopharyngoscopy he said my throat looked a bit dry and there was a small amount of thick mucus there and they didn't see any obvious signs of reflux.

    I was going to go for the ph monitoring after this, rather than another round of PPIs-as-diagnosis, but the ENT also suggested a 3rd conservative option where I could drink more water for a week and see how I felt, which is exactly what I did.

    I am completely embarrassed for wasting so much time, money, and energy, when in the end the treatment was both free and painless. I know that this won't help most people on this board, but I would agree that LPR shares a lot of symptoms with other things and I wish my doctor had not been so quick to prescribe PPIs.

    Before this I never suspected that my water drinking habits were a problem since they did not change at all prior to my sore throat symptoms. I also have never been diagnosed with any allergies, nor did I ever feel dehydrated or thirsty. It took about 1.5 weeks of pounding water (and subsequently dislodging plenty of phlegm that was apparently there!) before I really felt back to normal. To be fair though, I think I was actually drinking far less water than your average person.

    Best of luck to all,
    -frangle

    Last edited by frangle; 12-12-2011 at 01:02 AM.

     
    Old 12-12-2011, 01:07 AM   #25
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Jude, just read your post on taking a Vit D test. I agree. One should take a lab test before taking Vit D. It would be the responsible thing to do. I don't think one should take Vit D without testing what your score is. If your levels are high enough you don't need to take it. The only thing I can think of, if Vid D is expensive through your Dr., is to go on web and compare Vit D tests that you can have sent to your home and see if you can get a test that is a reasonable cost. I read on the Vitamin D Council web site that they have some Vit D tests that can be sent by mail. I don't know how good they are as I get my test through my Dr. Is your LPR very painful? Or is it more irritating, like claring the throat etc.? One of my first Drs in the beginning told me I had the worse case of LPR they had ever seen. I was devasted at the prospect of knowing that I could not withstand the pain. How I made it through the last two years...I really don't know. And everyone around me didn't understand the severity of it. I would literally not be able to sit still because the pain radiated down my arms and legs from my throat. I was falling apart and trying desperately to keep it together for my family. I dropped two pounds a day after the fundoplication surgery. I was sure I would die from a slow painful death and my Drs did not seem one bit concerned about it. They just kept saying you have to learn to live with the pain. I have been very lucky to pull myself out of the LPR nightmare. I will always have it but I'm so much better. I have a life and sometimes go 5 days and forget I have it. My throat does look like a LPR throat though. I try not to look at it as I get upset when I do. I am grateful for my good progress so far. I hope so much that Vit D and fish oil continue to keep the pain away.

     
    Old 12-12-2011, 09:33 AM   #26
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Frangle: I know exactly what you mean with how nothing makes sense with LPR. PPIs like omerizlae made me worse too...all the PPIs made me worse. Six weeks after I started Nexium I developed pneumonia. That's when my GI sent me to surgery. He said 30% of the people who are on PPIs develope pneumonia. It was a desperate situation for me and I could tell my Drs didn't want to do surgery but there was nothing else they could do for me. From what I read LPR is the failure of the UES/LES and the vapor/gas that rises to the throat is small enough only to burn the throat. Not the lower esophogus. Generally speaking people with LPR have no GERD pain. We would not feel anything if the UES was working, even if the LES was loose, the vapor/gas is so small the lower part of the esphogus can take it. The throat tissue can't take it. The esophogus has many layers and made for small vapor/gas escapes. But the UES is suppose to close of the throat. When it doesn't work right you get LPR. The throat is only one layer thick between the tissues and the nerves that go up into the head. From what I have read there is no cure any where that I've read of. My current Drs and new surgeon I consulted don't want to chance a second fundoplication surgery to tighten things up. That's why they said I have to learn to live with the pain. They said if they go in again I risk the chance of even more problems without curing the burning throat. LPR is a very common problem but only "discovered" around 2002 or so. Some Drs just don't believe it exists. From what I understand the standard GERD medication doesn't work for LPR generally. That's why we LPR patients get no relief from PPIs or surgery. Sometimes some of LPR patients are lucky to have it work but generally speaking the standard GERD treatments don't work for LPR patients. I held out hope for two years with my DRs and they in the end gave up on me. So I'm on my own. Vit D and fish oil has done more for me than medications or surgery. I now have quality of life.

     
    Old 12-12-2011, 01:04 PM   #27
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Thanks for the clarification Eew...

    Hello everyone, hoping we all find our paths that work best. I experiment day to day. Lately I find Cayenne pepper is wonderful liberally sprinkled on everything. Maybe not for everyone. Maybe it changes the ecology of my throat and gullet, doing that seems to go with my tongue feeling a little less coated and more moist this week. And symptoms quieting.

    There seems to be a giant emotional aspect to this and I am struck that the vagal pathways are as involved in our throats and hearts when we cry at movies or cheer at games or laugh with our kids, etc -- that last thing to think about and do while we are so wrapped up and worried, may be the first thing to think about and do to challenge the rhythms and MAYBE enjoy improvement. Frivolity is looking like medicine to me.

     
    Old 12-13-2011, 01:23 AM   #28
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Hi Brien: I know what you mean about LPR being emotional...when you have this horrible health issue it really takes a toll on your ability to live a normal life and function without fear of what is our day going to be like. The Drs had me convinced that LPR was caused by emotions but having been through so much physcial pain and then finding that Vit D and fish oil helped me so much, I honestly am quite doubtful that LPR is triggered by emotions. I think honestly that is bunk as Drs are at a loss as to explain what is wrong with us. Its easy to point to emotional issues when there are no answers. There is no doubt though, that once LPR starts, it causes terrible stress depending on the severity of throat pain. I don't believe emotion causes LPR. It is a physical anatomical problem. Triggered by the UES and LES not closing off the stomach vapors/gas/droplets that keep hitting the delicate throat tissues. Trying to calm yourself will more likely make you feel like it is your fault for not being able to control the LPR. LPR is the spinchters of the UES and LES becoming loose and not constricting tight enough to close off the stomach reflux that everyone has. I just don't want you to blame your emotions. We just have an anotomical problem that Drs don't understand and Drs are so rushed when they see their patients that they don't have time to study the problem. They just push the PPIs. In our cases PPIs generally don't work for us. From all the blogs I've read it appears that there are varying degrees and severity of LPR. I've reduced my LPR severity by taking Vit D because I think Vit D must improve muscle tone and therefore help close off the stomach somewhat. The fish oil I believe may lend itself to healing a damaged vagel nerve with time. We'll see. I hope you can take a Vit D test just to get a bench mark score on yourself. I still have a ways to go to get to a score of 80. I'm keeping my fingers crossed that I can keep pain away with my own treatment plan as no Dr so far has been able to help me. I've gotten 10x worse under their care. My ENT is just checking and documenting my throat now every six months because I made the request. Otherwise they would cut me loose and keep collecting my premium every month. I think once you have a chronic problem you become expensive and it is human nature to not want to deal with patients that can't be helped anymore. I always thought Drs went out of their way to stay with you and help you no matter what but the reality is that once you have something they don't know what to do about they cut you loose and your on your own. Its a scary place to be. I guess that is where courage to deal with it by yourself comes in. I wonder sometimes how will it be in ten years when the spinchters get looser...all we can do is share with each other what works for us as individuals and try to manage our condition the best we can.

     
    Old 12-13-2011, 09:03 AM   #29
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Quote:
    Originally Posted by eew View Post
    I hope you can take a Vit D test just to get a bench mark score on yourself. I still have a ways to go to get to a score of 80.
    If I am not deficient in vitamin D, could it still help with my LPR?

     
    Old 12-13-2011, 07:22 PM   #30
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Kevin: I honestly don't know if it would help. But, my Dr put me on 2,000 IU of Vit D3 for life. I have literally covered up or sat under shade for the last 40 years (since I was 20 years old) and I think I harmed my body with lack of sun. I've done extensive research and dosing of 2,000 IU is a very safe amount to take, if you can't take a Vit D test first. I started Vit D at 6,000 IU in July 2011 and after 3 months dropped it down to 4,000 IU and got my Vit D score to a 44. I remain for the moment on 4,000 IU of Vit D and I'm improving my "LPR" every week/month that passes. Today, after XMAS shopping with my husband we went out to eat lunch and I enjoyed a normal meal and didn't worry about eating alkaline so I wouldn't burn. I told my husband that after two years of thinking I could not take the throat/neck/head/ear pain anymore I feel so fortunate to have stumbled onto something that could help me. I'm literally stunned at this good fortune. I use to burn drinking just plain water. I ate akaline and burned to death. I'm not sure but my theory is that Vit D has helped me because it strenthens muscles and the UES/LES are esophogeal muscles. It's my theory. It is possible that my "LPR" is specifically caused by Vit D deficiency. Maybe there are other reasons out there that casue LPR symtoms. Maybe I was just vit D deficient and it manifested itself as "LPR". I don't know as I can't find a Dr who has time to think any of this through. My Drs are so rushed. They can barely spend 5 mintues with their patients. If the PPIs and surgery don't work then they just say "sorry there is nothing more we can do for you..." So basically I'm on my own. I plan to retest in Feb 2011. I read conflicting research on what levels should be reached. A score of 50 is what is safe to get to. I have a goal of getting to a 80 score, but I may rethink that level after I do more research. There is conflicting research on ideal levels of Vit D. Some research indicates a score of 50 is good and as you go higher it is not as effective. All I know is that I continue to improve every week/month that goes by. I'm very grateful that I didn't give up on myself and that I perservered and never stopped doing my own research. These blogs gave me the courage to do that. To know that I was not alone with this painful illness and that people shared their story has been invaluable to me.

     
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