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Old 12-11-2011, 12:47 AM   #16
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Re: Anyone with LPR and healing well ??

Cindy: how are things going?

 
Old 03-26-2012, 09:25 PM   #17
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Re: Anyone with LPR and healing well ??

cindy i get the same thing...in the morning the globus sensation isn't as bad but as the day goes on it seems to get worse...

 
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Old 05-25-2012, 10:50 AM   #18
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Re: Anyone with LPR and healing well ??

I started feeling bad a few weeks ago with terrible acid reflux and bad allergy symptoms. Went to the doctor and was prescribed nexium and an inhaler and was told to take allegra. Nexium wasn't helping with the acid reflux. Did some reading on this board and decided to start the day with a Zantac and Allegra and sprayed with saline solution every hour or so and I feel much better. Try cleansing your nostrils and see if it helps. In your case it sounds as though you have been suffering for a while so it might take some time. Also, be conscious of being around dust, mold for extended periods.

 
Old 06-02-2012, 03:36 PM   #19
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Re: Anyone with LPR and healing well ??

Hi guys, Just wanted to put in a quick post because I am making some progress with my 6 year old son's LPR and acid reflux. Months ago, I was at a complete loss for what to do. He had been on Omeprazole (Prilosec generic) and Zantac for over a year... maxed out levels of these, and they were doing nothing. He had a chronic cough (every 20 seconds sometimes for hours on end) and did chronic throat clearing. He had a thick layer of white mucus on the back of his throat that no specialist could account for or do anything about. He had chronic sinus infections and ear infections (resulting in 2 sets of ear tubes). We had gone through all the testing (endoscopies/biopsies, ph metry testing, immunity testing, asthsma testing, a gastric emptying test, CT scans, etc., etc.). Thus, after basically giving up on finding a cure via our conventional doctors, I joined message boards like these to see what others had to say.

First, via this group, I learned about the importance of Vitamin D3. My son's level was very low, 32, but most of our conventional docs said that as he fell within the "normal range", not to start giving him suppliments. However, after our allergist that agreed with me that my son's level was too low, we started D3 for him, and he started to improve... it was only a tiny bit, but it was worth it! Then, we started him on a probiotic tablet in the morning... again, a tiny improvement. Then, a new GI doc suggested that the Zantac may be causing the cough, so we reduced his Zantac by 1/2 (slowly) and made more progress (his cough went way down!). We also got my son an immunity booster shot as his immunity levels were SO low. Finally, as so many people suggested to do on these boards, we started looking into local naturopathic and holistic doctors.

The first naturopathic doc that we went to said that my son had an intolerance to cow's milk, baking yeast and sugar. So, I switched him to goats milk and cut out pretty much all of his cheese and breads (including pizza dough... hard to do, but we use something called Lavish now. It's like a pita bread, and it's an okay substitute... better than nothing). And, in 3 days of doing this, his throat clearing went away... completely! Our allergist was blown away... the mucus in this throat was finally gone. The naturopathic said that the mucus was the body's reaction to the food intolerances. She also put my son on a digestive enzyme. He takes it 3 times a day with each meal. And, as for food, we continue to follow a strict diet... none of the foods mentioned above, plus none of the standard reflux causing foods: no tomatoes, no spicy food, no chocolate (such a hard thing for a kid to give up, but I've been substituting in as many non-chocolate yummy sugar-free alternates as possible). We also try to eat Gluten free whenever possible. My son does not have celiacs disease, but as gluten-free foods are easier to digest, why not?!

Another naturopathic doc put my son on a few more suppliments, and he continues to improve. We are still doing a dose of Prilosec in the morning and a dose of Zantac before bed, but we hope to eliminate the Zantac by mid summer. And, we hope to get off the Prilosec asap after that.

Anyway, I guess the main thing I want to do was to inspire people to not give up on their situation. If you can find a good naturopathic doc nearby, they might be worth a visit. We have also had great success in following a strict reflux-friendly diet and trying out all those enzymes and suppliments that I was initially so afraid of (just because they were foreign to me). I wish everyone the best! LPR is a terrible condition to have to endure! I know our journey to completely heal my son is long from over, but he is SOOOOOOOOOOO much better off than he was a few months back. I finally have hope again, and I want the same for you! (Again, I know that everyone's situation is different, but maybe some of these same suggestions will work for someone else out there... if so, it's worth the post!) Good luck!

 
Old 06-02-2012, 05:34 PM   #20
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Re: Anyone with LPR and healing well ??

Hi everyone: my heart really goes out to all that are suffering so much with LPR. I too had it extremely severe LPR for two years. None of the PPIs helped me. A fundoplication surgery left me 10x worse. I was devasted. Words are not adequate enough to describe this devasting anatomical problem of the UES/LES.

I can't quite believe I have pulled myself out of the severest LPR. I was slowly dying and all my Drs were/are at a loss as to how to help me. They permitted me after awhile to experiment. I started off with heavy duty medical doses of probiotics. Over 4-5 months I got a 30% improvement. But a burn is a burn and its was still horrible. Like all of you I kept a very alkaline diet. I burned on everything even water. It was a night mare and the throat/head/nerve pain was excruciating. My Drs cut me lose last Aug 2011. Said there was nothing more they could do for me. They told me they did not know what I had. They refused to send me to out for an outside opinion. I couldn't imagine living a life with my family in this horrible condition.

I went on the web and asked what strengthens muscles and up popped Vitamin D. The more I researched the more I thought it could help. And it has. I have been working on getting my Vit D score to 65 and then maintain it. I also go out in the sun at least 20 minutes a day. I've improved so much over the last 10 months. I see my ENT to have my throat scoped every 6 months. On each visit so far he continues to say my throat is less red and continues to improve. I have my life back and I still can't quite believe I got control of it with Vit D3 drops. Its not a pefect cure but pretty close. Please get your Vit D test done every 3 months, read as much as you can on Vit D, and at least experiment and get your score to a 65 and get 20 minutes of sun each day on as much exposed skin as possible. I would be interested if anyone else experiences improvement like I have.

 
Old 06-03-2012, 05:59 AM   #21
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Re: Anyone with LPR and healing well ??

Quote:
Originally Posted by eew View Post
Hi everyone: my heart really goes out to all that are suffering so much with LPR. I too had it extremely severe LPR for two years. None of the PPIs helped me. A fundoplication surgery left me 10x worse. I was devasted. Words are not adequate enough to describe this devasting anatomical problem of the UES/LES.

I can't quite believe I have pulled myself out of the severest LPR. I was slowly dying and all my Drs were/are at a loss as to how to help me. They permitted me after awhile to experiment. I started off with heavy duty medical doses of probiotics. Over 4-5 months I got a 30% improvement. But a burn is a burn and its was still horrible. Like all of you I kept a very alkaline diet. I burned on everything even water. It was a night mare and the throat/head/nerve pain was excruciating. My Drs cut me lose last Aug 2011. Said there was nothing more they could do for me. They told me they did not know what I had. They refused to send me to out for an outside opinion. I couldn't imagine living a life with my family in this horrible condition.

I went on the web and asked what strengthens muscles and up popped Vitamin D. The more I researched the more I thought it could help. And it has. I have been working on getting my Vit D score to 65 and then maintain it. I also go out in the sun at least 20 minutes a day. I've improved so much over the last 10 months. I see my ENT to have my throat scoped every 6 months. On each visit so far he continues to say my throat is less red and continues to improve. I have my life back and I still can't quite believe I got control of it with Vit D3 drops. Its not a pefect cure but pretty close. Please get your Vit D test done every 3 months, read as much as you can on Vit D, and at least experiment and get your score to a 65 and get 20 minutes of sun each day on as much exposed skin as possible. I would be interested if anyone else experiences improvement like I have.
EEW - Just wanted to say a HUGE thanks to you for being one of the primary people that taught me about the incredible importance of Vitamin D3!!! It was by all means my son's first step towards getting better! I am so glad that I listened to you! Now, everyone in my family takes D3 as we have learned about how incredibly important it is to the body!!! Thanks again... I hope you know that you are absolutely helping to improve peoples' lives! Your posts are tremendously appreciated!!! THANK YOU!!!

 
Old 06-05-2012, 01:54 AM   #22
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Re: Anyone with LPR and healing well ??

Dear HRVIOUX: I'm so happy to know that! Thank you for taking the time to say such nice things. I still shudder to think of the huge number of people on our planet suffering from horrible illnesses due to low Vitamin D all their life. I suffered so much...it is hard to describe. The pain of acid burning through my throat nerves deserved focused attention from my Drs but not one thought about giving me a Vit D test and when I asked for it, my Dr never told me what to do about low scores. I had to ask. And the dose I was told to take was way too low. I shudder to think of people who don't do their own research. I almost lost everything... I couldn't take the pain after two long years and my resolve to get through each day was waning. Most people I suspect would not have been able to endure it. I was losing my ability to cope with the pain. I'm very grateful for being tencious and never giving up. What is so difficult about LPR is that you have no support groups, Drs look at you like its a mental health issues and your family believes them because they have no answers. LPR is real and its horrible. To have found something that brought quality of life back is stunningly unbelievable to me. How is it that our medical Drs do not do this for every patient? It just doesn't make sense to me. That is why I keep coming back to share. I can't bare that anyone else suffers unnecessarily.

Share with your family friends how important Vit D and the sun is. Encourage them to go get tested at the very least twice a year. And research everything you can on Vit D. I personally am working at getting to a score of 65 and will work hard to keep it there as that is were the body likes to be from what I have learned. Hopefully someday our Drs will do this routinely and we will see huge improvement in stats for every type of illness imaginable. It is nothing short of incredible that something so simple is not even part of mainstream medical care.

As for the future I remain cautiously optimistic as I'm not sure how long my improvement will continue. I still have questions as to whether Vit D deficiency over decades can be reversed. I just don't know the answers to these questions and can't find much on it. Let me know if you find any materials on the subject. I still have whispers of LPR but I continue to improve slowly from my ENT's clincal observation. So this gives me hope. Thank you again for the note of appreciation. Part of the healing process of this scary illness is to know that one has been able to help someone else. So you have helped me I want you to know.

 
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Old 09-02-2012, 12:50 AM   #23
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Re: Anyone with LPR and healing well ??

I am so glad I found this site. I just recent got diagnosed with LPR after going to several different docs to find out what was wrong with me.


My ENT told me I had LPR and had me on protonix. I also was diagnosed with Chronic sinusitis so I am taking baixin that. LPR and sinus problems go hand and hand because lpr causes post nasal drip. Suffering from both of them at the same time has sent me to the ER numerous times thinking I was going to die from something. My wife thought I was losing my mind as well as my co workers. On my last visit to the ER the doctor told me I need to take Vit d pills to help me. I Pretty much ignored it because I did not think that would fix my problems.

I did end up buying them later on but I never noticed if they worked or not. But I am going to try it again to see if it works for me.


Every ppi I tried did not work and makes things worst as far as I am concernd. So far I have been eating safe foods that does not effect reflux and staying away from the bad. I drink apple cider vinegar and raw honey to help me control the pain.

LPR is truly a painful disease. My throat hurts constantly and I have neck pains with my LPR like I have the flu or something. Just pains all through my neck and throat. I do get the chest pains still, and I have nights where I can't go to sleep because of this. I also get deep belching from the button on my stomach and regular belching. Sometimes I think I have more then LPR because when I sit down on the floor or drive I am completely uncomfortable. I have to move around constantly. I get pains all around my abdomen.


I am going to try the probiotics and he Vit d pills and I pray that it helps because I really am looking for releif from this madness. My PCP told me Friday hat my Vit D was 25. I wonder if hat is why I can't defend myself from LPR or my sinus problem.


I am about to load up on getting some Vit D in me. Wish me luck. And thanks for all you guys input here. It really did help me a lot on under standing this disease.

 
Old 09-02-2012, 10:08 AM   #24
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Re: Anyone with LPR and healing well ??

Hi everyone, it looks like Fella 370 posted yesterday. Fella370 don't take Vitamin D3 drops until you get a lab test for your current levels. Once you take the test, as soon as you get home take 5,000 IU until you get your test back. Depending on what your test says check with your Dr. Most medical Drs tell you not to take more than 2,000 IU of D3. But from all that I read, if your low you need to take more. How much more depends on your weight, the color or your skin, the latitude you live in and your Vit D score. If your score is under 30 be scared, sit up and pay attention to your D score. If you live at or above the 37th latitude the sun rays are not strong enough to keep your D score above 50. If your heavy your body needs more Vit D. Fat cells take up the D that is circulating in your blood stream and leaves you at risk.

My D score, when I took it in July 2011, was 25. My Dr did not tell me what to do. I had to write and ask her what should I do. She said to take 2,000 IU of D. After I researched extensively I felt the amount was way too low. I had a esphogeal muscle problem that did not close off my digestive process and created horribly unbearable throat/neck/head/ear pain from acid vapor escaping up to my tender throat tissues and burning through them to my throat nerves. I knew I had avoided the sun for 40 years. In my younger years it was the recommended "trend" to stay out of the sun. They literally scared the population into not going in the sun. Add to that that I lived most of my life on the West coast under fog most of the time. Add to that that I was above the 37th latitude. Add to that that I worked inside all day long and on the computer or inside at night going to night school for for 25 years, raising two children, cooking and cleaning. Put all that together and its like unbelievable that I didn't get some serious illness.

Keep in mind that recently the national standards for Vit D scores has gone from 30 to 20! Yes that is right! So if you get a score of 21 your Dr in all likelyhood tell you that your within "normal range". From all that I have read that is pretty scary as your health will deteriorate.

I wanted to share with you all, that I have been on Vit D3 drops for 13 months and I continue to improve. I went from burning to death and slowly, ever so slowly improved and went from burning to death to whispers of acid vapor to whisps of vapor. Now I'm at just a whisp of vapor once and a great while. I'm back to eating normal. I still have a tendency to avoid tomatoes of any kind like spagehetti sauce, alcohol, chocolate and garlic. But to my surprise, there are times I'm at someone house or out at a restaurant and I have a little of these things and if I didn't know I had LPR, I would miss the subtle wisps of the tell tale LPR vapor. So I'm not 100% but I continue to get better and better to my surprise.

I also take medical doses of probiotics. Ask your Dr for it. Tell your Dr it makes you feel better. I use to take 4 packets a day but am down to 1 packet a day. I think that probiotics helps create B12 in the digestion process and thereby allows your body to pick the nutrients from food. Important for nurological health.

As a LPR patient, who has tried everything, the strongest PPIs and a fundoplication surgery, I want to share that nothing helped me except D3 drops and probiotics. I got 10x worse on PPIs and the fundo surgery. I almost died from the severity of LPR and my Drs told me there was nothing more they could do for me. I was in very bad shape. My family and Drs thought it was a mental health issue and I was sent to psy and was asked over and over what was stressing me out. It was all I could do to remain calm, in the face of unbearable head/nerve pain, caused by the acid vapor burning through my tissues, to tell the Drs that I wasn't stressed...that I was burning to death. Even though my records from another region showed my diagnoses and that I was treated like a GERD patient they still thought it was a mental health issue. My new set of Drs refuted that diagnoises of LPR and said there was no such thing but they told me they didn't know what I had. I made final life plans. I knew, and correctly so, that I was on a slow and steady decline.

Remember this, the modern medical community isn't taught anything about Vit D and the nutrients our body needs. Or the importance of the sun for good health or that the latitude one lives in effects the quality of the sun you get on your skin. If you live above the 37th latitude the sun rays are not strong enough to create the level of D that you need in your body no matter how much time you spend int he sun. You will then need to supplement. But it has to be D3 drops under the tongue and leave it there a few minutes before you swallow it. It will absorb better. Get on high doses of medical probiotics.

D3 and probiotics is not a overnight cure! It takes time. And you must be consistant.

I read of a formula for vitamin D that is 35 IU x your body weight but subtract what you think you get in your food. Do an estimate.

I'd rather take D3 drops and medical probitoics than take all the dangerous PPIs and surgery. I think its important to start at the basics and then move to other things if the D3 and probiotics don't work. But give it time. In the beginning you will need to make your diet as alkaline as possible. Drink and eat lots of lettice and greens like swiss chard and spinich and eat small amounts of protein and cut out sugur and alcohol. You will be able to enjoy it once after your D score gets closer to 60 but in the beinning you need to relieve your throat of the acid vapor until your muscles strengthen from the D3 and probiotics that create B12.

This has worked for me and I'm no Dr. I just researched and researched and connected the dots. If you are frustrated with not having a Dr to guide you get a Dr that looks at the whole body system. Their sometimes called a Functional Medicine Practiontioner. Personally I think a person can do the Vit D and probiotics themselves. Just read alot and do your research. Don't take my word for it. Read and research as mush as you can and take a Vitamin D test right away before you take Vit D3 drops. It wouldn't hurt to take a B12 test either. Your score should be as close to 800 as close as possible. Currently my B12 score is 539 and I'm working on getting it up to 800 with medical probiotics and occasionally I take one drop of Methyl B12 drop (40 mcg) but I don't over do it on B12. I rather take the probiotics to get my B12 score up to 800.

Hrvioux how is your 6 year old son since you last wrote? Is he continuing to improve?

Hang in there if your suffering. One of the signs that you are low in D is if the PPIs don't work. And of course that your D score is low. Anything under 50 is unacceptable. But that is my opinon.

When I last wrote I was going to get my D score to 65. I've changed my mind because I've researched extensively. At the equator, people have D scores of 80 - 120 on average. Since I have muscle and neurological deterioration, as seen in my esphogeal muscles going "limp" for two and half years, I want to experiment and see if I can get further improvement at higher scores. So I'm pushing my D score to 80 and will evaluate how I feel. I'd rather do this than take PPIs and die from severe LPR. And the higher my D score has been the better I feel.

And some the additional improvement in my health have also included that incontinence has disappeared, my wrists and ankles are not swollen anymore, my joints and bones done't hurt anymore, my legs feel stronger. From what I read, Vitamin D helps strengthen all the muscle of the body. The list of things that Vitamin D does is so long it hard to comprehend why its not part of a Dr's medicine bad. Go on the web and enter any illness you can think about and put in Vit D next to it. IE: Vitamin D and muscles; Vitamin D and cancer; Vitamin D and neurological health; Vitamin D and heart disease; Vitamin D and MS; Vitamin D and diabetes etc. You will be stunned at the implications. I have my whole family on Vit D and their health has improved tremendously. The joke in the family is that I'm now called "Dr ..." with much affection and appreciation. My family all say I have saved their life. No I say, "vitamin D and sunshine has"...I just love them and don't want anything to happen to them. I want us to have the healthiest quality of life that is possible. I don't want them to suffer unnecessarily and be sent to mental health for a real condition that no Dr knows how to treat.

Please share how you are all doing as I read these message boards and hope someone else is able to duplicate what I've done. That will be good to know, is all of you are able to duplicate LPR improvement.

Last edited by eew; 09-02-2012 at 10:17 AM.

 
Old 03-08-2013, 12:45 AM   #25
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Angry Re: Anyone with LPR and healing well ??

I am a 33 year old with a hiatus hernia and LPR. I feel your pain. Have bad bouts where I cant swallow, have the sore burning throat as well. Its been like that now for 3 weeks. Norm clears up in 1 week, this seems to be prolonged. Normally triggered by stress and not eating/not eating well.
I am on Nexium 40mg x 2 but doesnt seem to help the LPR symptoms. Not sure what the ENT will say. Trying alternative therapy now as I am at my wits end unable to eat.

 
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