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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 12-27-2011, 08:14 AM   #46
    BrienE
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Pretty Quick turnaround EEW. My Vit D test result is 13, normal I am told is 30 -- 100

     
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    Old 12-27-2011, 12:23 PM   #47
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Oh my goodness Brien....your so low on Vit D! What are your thoughts? What are you plans? What did the Dr say to do? How much do Vit D3 drops do you plan to take and for how long.? Please do take a vit D test every 3 months until you get a score of 50+. My goal is 80. I figure it can't hurt trying to get there. At the equator people have scores of 80-100 on Vit D tests so I reason that its worth trying to get there and see how I feel and if my improvement continues. Thanks so much for telling me. I'm so anxious to hear if you improve LPR with Vit D3 drops over the next few weeks/months. Keep us appraised of your LPR status.

     
    Old 12-27-2011, 12:53 PM   #48
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Thank you so much Jude. I guess I am a legend now. I turn 60 next month. But still feel like 20 yrs old in my mind! Yes, I totally agree. I have a ton of questions as to why LPR starts. And how to prevent it for our families and friends. What triggers it? I think its a constellation of events, life style, and diet. I'm so sorry your still suffering when you try to enjoy a little of your favorite foods. LPR is a nightmare when your burning/searing. Yes, your ideas on trying things that Drs haven't tried is good. Jude, are you able to try to take a Vit D test? I know cost may be an issue. My hunch is that we can't rely on getting enough of the right sun rays. We may get some sun but we may not be at the right latitude for enough of the D hormone to be made on our skin. Ask your Dr/Herbalist if supplementing with D could be tried. I think trying Manuka honey is a great idea. At least it sooths your throat and its natural. Its not causing other issues on our health. Yes, I lived on carrot juice for the last two years prior to Vit D. I still drink carrot juice and avoid orange juice. I drink apple juice, grape juice, pomogranit juice too. My staples for sure! I use baking soda gargle throughout the day to nutrilize the acid vapor/gas that may occasionally rise to my throat. I don't drink the baking soda. I don't think its a good idea. Another thing I wanted to share that I learned over time is that alot of medications relax spinchters with use over time. Some bloood pressure medications do too. I was on one that is known for relaxing muscles for about 7 years before LPR came on. So like you mentioned some antibiotics do too and pain medications as well. I have it written specifically at the top of my medical file that all medications have to be checked to see if they cause muscle relaxation and or acid reflux. They gave me Ibuprofen and oxicodin after the fundoplication surgery and I seared to death. My sister looked it up on line to see if they cause acid reflux and called me immediately to stop taking it. To switch to acetaminophen for pain. I still can't get over a surgeon giving you pain medications that cause acid reflux when that is your main problem!! It just boggles the mind. I'm no longer on blood pressure medications. For some reason my blood pressure returned to normal in May 2010. I always worry about going into the hospital and getting something that will kick up horrible acid reflux. I also read that after you eat or drink something greasy, or have tomatoes, or if you try a chocolate or have a little bit of wine, to drink a half a glass of water right away to get it off your spincters, as it relaxes them. So glad to find all of you online and please please let me know if you get a vit D test and what your score is and if you started on Vit D did it help? I'm so anxious to know. Brien I can't wait to hear what you do about your low Vit D score and what your Dr told you to do and if you improve. It will be so good to know if it works for others. Thank you for taking the time to respond.

     
    Old 12-27-2011, 01:37 PM   #49
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Hi EEW and everyone: I already piked up Cholecalciferol, 4 capsules, to take once a week @ 50,000 units, for 8 weeks. I have yet to look it up but you know I will! I assume this is high test vit D supplement. Going to visit friends at supplement store today and see what they think too, there are drops there but the dosage is so small in comparison, highest is 10,000 but most are 1,000 or 2,000.

    I am certainly eager to see what it can do for my throat/digestion, but also to see if it makes a difference in my energy levels which have sapped for the past few months. Also sleep issues and wonky hormones -- wide awake after three hours never to fall back to sleep, rather I'm tired and wired for rest of day. I don't think it is reflux related. It could be apnea, not sure. But it would be nice if the D helped!

     
    Old 12-27-2011, 02:00 PM   #50
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Oh Brien, I am so happy to hear you have an answer on Vit D levels and the Dr is having you take a high dosage to begin with. Your levels are dangerously low. A score of 30 too low. But a score of 13 is scary! The Dr wants to get your levels up real quick. Oh I can't wait to hear how you feel. Yes, sleep will improve. When I started Vit D I immediately slept through the night. I was sleepy terrible for years...couldn't sleep longer than a few hours and wake up. Vitamin D made a big difference in my energy levels. When I walk I'm stronger. I can feel it. I feel 25 years younger. What a difference it made for me. From what I read there are varying severity of LPR. Vit D might take your LPR symptoms down to a mild level. I can't wait to hear how you feel as time goes on! Thank you so much for checking out your Vit D. I just have to know if it helps other people! Soooo good to hear this news!

     
    Old 12-27-2011, 02:56 PM   #51
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    I have trepidations about taking 50,000 units of Cholecalciferon. I see actually a whole lot of side effects I am not interested in, and they include along with heart palpitations, digestive issues (great) -- sleeplessness. As one with enormous sleep debt I am not for that! I am off to the store to grab the gentler alternative, drops whereby I can control the dosage from say 2,000 to 8,000 depending on how I spread it out daily. That is high according to some sites but it seems I am severely deficient. Doing some math eew... if you started at 4k a day (not sure but it seems you did) then you ended up with 28,000 per week.... still not 50,000... mullng it all over. The stuff is here if I want to take it but.... yow!!! It looks scary....

    My sister's brother in law is a pharmacist and will be finding out some more for me tonight....

    Happy sunshine everyone.

     
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    Old 12-27-2011, 03:25 PM   #52
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    I do agree with the role nerves play in all of this. I have been on nexium for 2 years am planning to stop it soon and see what happens. It took a good 6 months before I started getting better. Dr. said my vocal cords were very red and inflammed, plus I had coughing, horseness, etc. I was taking xanax for anxiety, and happened to realize when ever I took them, my throat problems were so much less. Now maybe the acid reflux is causing problems, and in turn effects nerves in the throat. Why is it so confusing?? Anyway just wanted to say the xanax has a good effect for the problem.

     
    Old 12-27-2011, 05:46 PM   #53
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Hi noni2, all the best with your scaling down of Nexium and continuing to feel better. I know, isn't it frustrating considering all the possible mechanisms which may not be nearly as tidy and linear as the traditional medical and pharmacies complex would have us believe. To me it's tricky, the exactly described mechanism of LPR might apply in some people but not others.

    It even makes sense to me that person could develop reflux or develop more of it from stress over daily living half choking all the time and clearing throat, other symptoms.

    Did the Doc tell you he or she identified and measured actual acid/pepsin/bile caused damage in your vocal tissues? Did they present proof that acid was definitely coming up into your throat from your stomach and causing the redness and inflammation?

    Are you currently taking xanax much? Do you feel that taking it correlates with overall improvement of symptoms that has continued even if you have stopped the xanax?

    I was prescribed some, and had one last night for the first time in awhile. Wow did it knock the wind out of me today. For a musician who needs to maintain fine motor control it is not the best kind of drug!

    Anyway, before I developed any throat symptoms I had other things going on with digestion, now years of healthier eating have really helped all that stuff out, but have been dealing with "LPR" whatever it is and whatever the etiololgies, for about two years. PPIs have done nothing for me.... in fact my globus started after taking Prevacid.

     
    Old 12-27-2011, 07:59 PM   #54
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    The Dr. didn't do any test for acid, but since the nexium did seem to help after a time, that is what I have been going with. When I went for my first visit my vocal cords were very red and inflamed, went back 8 weeks later, and he said they were better. Went back a year later (that was oct. 2010) and he said "they are not as pink as I'd like to see them", since then someone told me vocal cords are white, so who knows. I only take xanax occasiionaly very lose dose.I no longer need it for anxiety so when I do take it is when I seem to be having a day where my vocal cord lpr or whaterver to call it is more troublesome. I will probalby go to my ent soon afterthe first of the year to see how they look. Although it is so so much better than 2 1/2 years ago, actually I think it had started more than 3 1/2 years ago, but then it got really bad after a really bad cold, which other people have said the same thing on this board.

     
    Old 12-27-2011, 09:46 PM   #55
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Brien: yes keep researching. From what I read you Dr is following what they usually do for people with real low levels of Vit D. But as you said, you need to be comfortable with the amount you take. But start taking Vit D right away. Don't wait. Start right away taking a level that your comfortable with and keep your research going if you need to because you leave yourself wide open to illness with low levels of Vit D. When I found out my score was 25 I didn't feel 2,000 IU was enough to get my D count up from what I researched. 2,000 IU is a maintenace level. Not the amount to take for low Vit D levels. I didn't agree with my Dr's advice. I used a calculation I read about of 35 IU x your body weight. I then took that calculation and subtracted what I felt I got from food. I came up with 6,000 IU per day which I took for 3 months. I then got another D test and my D score went to 44. I then dropped it back to 4,000 IU and am aiming for a score of close to 80 because of the LPR. I improve every week/month that has past the last 6 months. It is helping me with the severity of LPR symptoms and I'm wondering if I get it close to 80 if there is a possibility of reducing LPR symptoms to nil. We'll see. I will request a Vit D test again around Feb 2011 to see if the 4,000 IU has gotten me up close to a score of 80 and then I will cut back to 2,000 IU a day for maitenance. I know its alot 50,000 IU but your Dr is probably very concerned that the your levels of D are dangerously low. I''ve read of people who have scores of zero on Vit D levels. Real scary. A score of 30 is too low for good health. Anything under 30 is nothing to fool around with. Its good you are checking with different opinions but don't waste anytime getting on it at some level. Please do sit in the sun for at least 20 minutes a day while you take Vit D and expose as much of your body as you can. I think it really helps boost your levels while you take Vit D drops and I suspect that the suns rays give us things that can't quite be duplicated in our Vit D drops. Can't wait to hear if your LPR symptoms start to disapear as the months pass. Thank you for getting tested and finding out. The questions fill my mind and I want to hear your progress. I'm thrilled to know that you might get better soon. You want to get your score past 50+ at least.

     
    Old 12-27-2011, 09:55 PM   #56
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    This is such an interesting thread. I think the best thing is knowing there are others out there with similar problems, and I'm not mad. I feel sorry for my darling husband as I do go on about it, mainly about research and what I can try next. He never says a word other than a supportive one, but must want to gag me at times.

    Here's a couple of thoughts - does anyone else have TMJ or do a lot of jaw/teeth clenching .... yes... I do! Not as bad as I was but I also wonder if that has played a part in all of this.

    You mention tomatoes - my reading tells me tomatoes become acidic only when cooked. But you say about them being a muscle relaxant?? Had me wondering. But then we're also told magensium can help, but that's also a muscle relaxant!

    I take bendrofluazide for BP, and don't think that's a problem. BUt I also take statins for cholesterol and I suspect that could be an issue.

    I'm thinking in the new year of going back to a herbalist I used to go to who has since moved. She was wonderful and is a clinical herbalist and nutritionalist, and her background is as a pharmacist. I'd travel to see her as i found her excellent, and I'm sure she'd do the Vit D blood test. It's Christmas holidays here, and lifes eems to go on shut down mode till mid january, apart from the shops.

    I'm going to have a go at not talking next week and see if that makes any difference to the vocal chords. I can hear many people saying - yay a silent week - thanks for your input.

    Hugs

    Jude

     
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    Old 12-27-2011, 10:35 PM   #57
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Jude I am with you! I have felt like I was in the twlight zone the last 2 1/2 years with LPR. The PPIs didn't work. Then I came out of sugery 10x worse and saw my beautiful life going down the drain and no Dr seemed to understand how serious LPR is, nor cared to explain or research anything. LPR can't be seen outwardly and no one has ever heard of it and everyone looks at you like your crazy. Acid burning through the thin one layer throat tissues is like burning to death on the inside. I was withering away steadily and my Drs weren't alarmed at all. I knew I was in trouble when I saw they didn't care. I have read of people going for years on asthma medication and later they find out its acid vapor going into their lungs the whole time! I've read of people having unexplained ear pain and later finding out it's acid getting in their ears! I've read of people who are told it sinus problems for years and they take allergy meds for years and then find out its acid vapor hitting high up the back of their throat into their sinues! And then when LPR is diagnosed some Drs just tell you that you have to live with unbearable pain with no pain medications ever offered and then when you finally get at least the LPR diagnoses other Drs say they don't believe in the LPR diagnois! And to add to that a LPR patients are caught between two specialities: GI and ENT. Neither of those specialists wants to take the lead on saying what to do. It's simply a nightmare. That's why I keep coming back to these blogs to share small insights I have been able to piece together. I can't stand to think that any person out there gives up hope and accepts what the Drs say. There has got to be an answer to LPR especially if medications don't work and surgery does not have good outcomes. I think you are thinking right going to your herbalist on this. I think in the case of LPR the meds and the hardship of surgery just makes our LPR symptoms worse. It compounds the problem of the spinchters not closing off the stomach. You get sicker and sicker. In my case I just layed in bed in wrenching throat pain for 5 long months after surgery. I laid in bed thinking if I didn't wake up it would be ok as the pain was unbearable. I could have developed clots and all kinds of other issues from not being able to get out of bed. And all I ever heard from my Drs was "you have to learn to live with the pain". I never got out in the sun so I suspect I got sicker and sicker. And I couldn't figure out why. I'd be so interested in your showing your herbalist a copy of this blog and get her professional opinion.

     
    Old 12-27-2011, 10:51 PM   #58
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Noni, do you have health insurance that you can request a Vit D level test? You don't live far from me and we are at a latitude that its not easy to get enough sun even though its sunny outside. Its worth checking out...don't waste any time getting a test on this if you are able to. Just call your Drs office and ask to have the lab test waiting for you. You don't have to go in for a Dr's visit to request a lab test. Being on Nexium doesn't allow your nutrients to be absorbed in the body. It depletes B vitamins. Are you on a high dose? It will be hard weaning off as coming off PPIs like Nexium cause more acid to pour in your stomach and for awhile you may have alot of vapor rising to the throat. It will settle down but its scary coming off them after so long. You've got to have a plan to deal it. Keep writing us and telling us what you are doing and how you are feeling.

     
    Old 12-28-2011, 12:18 AM   #59
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    http://gastroenterology.jwatch.org/cgi/content/full/2002/1001/1

    here is an interesting site - it's especially for those of us who have trouble swallowing at times - some exercises that strengthen the UES - might be worth doing as a new thread... What do you think?

    Jude

     
    Old 12-28-2011, 08:57 AM   #60
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    Re: A last point of view for the time being: LPR being recently revised as red herri

    Hi Jude --

    Here's the line I liked reading:

    "Patients in the real-exercise group also experienced resolution of postdeglutitive aspiration"

    I also think cautiously, post deglutitive can mean a lot of things.... how long after swallowing... are we talking immediately after, or are we also addressing food or food and digestive materials some time after swallowing-- I wish there was a little more to clarify. If I'm not mistaken these have been used to help stroke victims and others with weak swallowing reflexes, help them swallow more normally at the time of eating.

    However, I have often thought it had to help the upper barrier toned and tighter in that way.

    They are called "Shaker exercises" after the Dr who developed them:

    http://www.mcw.edu/rezashakermd.htm

    I tried it some mornings, months ago.... I found them to be actually very challenging. Besides the tendency to laziness I felt I was lacking enough encouragement to continue, not finding anything suggesting that rehabilitating swallowing per se meant the upper barrier, we'll call it, could remain 'tighter' in general... I have been actually very surprised there is so little research, putting "shaker exercises" together with "LPR" and related terms. It's a frontier for sure.

     
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