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Acid Reflux / GERD Message Board

Acid Reflux / GERD Board Index

Hi Nordic1 and Lady Sue62: Received both of your messages. So sorry that you both are suffering. It's hard having such a difficult problem to fix. Hang in there. Experimentation with different things will help you both find what works best for you.

Nordic1, I use to think that the nissen fundo surgery made me horribly worse. But with time, I've been able to unravel what happened to me. I think the funo did help. And I think I have multiple problems that came together in a constellation. I avoided the sun for 40 years! I believe that was part of what happened to me. And I loved chocolate, wine and sweets. I say this in hindsight after alot of research and connecting the dots. Considering how serious my LPR condition was, I consider myself incredible lucky to have come out of it with some quality of life.

At the center of that is my instinct to keep researching and not believing everything my Drs told me. They basically told me after 2 1/2 years of searing to death that I had to learn to live with the horrible pain of LPR. There was nothing more they could do for me. And they refused to give me a referral to a UC system.

Thank goodness that we have the web now. I pieced together that Vitamin D, a pre-hormone, strengthens muscles. I thought that it might help me. I researched the best Vit D to take (D3 drops or liquid soft gel; absorbs better). And before I took D I requested a D lab test from my primary Dr. And I test, even after 1 year, every 3 months. At first I was going to get my D to 65 but now I'm going to experiment and get it to 80, which is the high end of normal. So a few days ago I started taking 6,000 IU again. And I'm considering pushing it to 8,000 IU for a week and then dropping it down to 6,000 IU after a week. I'm starting to realize it is not that easy to get D scores up where they belong. It takes a long time to "fill the Vit D tank".

And because I avoided the sun for 40 years I may have caused permanent damage.

As a side note, I started two types of blood pressure medicines in 2005 through 2010. One of those blood pressure medicines could have contributed to atrophy of the spinchters. It relaxed the muscle of the heart to lower my blood pressure. Over time, with other contributing factors, it may have been one of the things that contributed to my spinchters going limp.

On another note, I have read that populations that live at the equator have D scores of 80-120. And so do life guards. So it is level that we can at least gauge where we can get close to. Because I want to get rid of the whisps of vapors I have once and while, I want to experiment and push my D level to high normal of 80. Its worth a try in my opinion. Better than popping PPIs which I'm terrified of. If you have to take them than you have to. But for me I just couldn't take them knowing what they do to the acid pumps of the stomach. And it causes the gastrin hormone to go sky high, because the body senses there is not enough acid when you eat to digest the food, and it automatically pushes more gastrin hormone. Terrifying to say the least.

The acid of the stomach is extremely important for good health. LPR patients generally suffer from atrophy or "limp" esophogeal muscles. In particular our UES (Upper Esophogeal spinchter) is not stopping the small vapors in their tracks before they hit our tender single layer throat tissues. Under that single layer of throat tissue are the nerves that run up into your head and yes, down into your arms and legs. When LPR is severe one experiences severe pain from the burning throat up through the whole head and down through the extremities. And it is a living nightmare.

What makes it difficult is that many Drs have never seen it, nor recognize it, or its misdiagnosed for decades on a patient. Sometimes patients get the acid vapors into their lungs and they are diagnoised with asthma for years and they are put on asthma medicine and basically misdiagnosed. One has to see an ENT to get a clinical visual and scope down through the nose and vocal chords.

Sometimes the acid vapor hits up behind the nose or gets into the nasal cavities and one can be diagnosed as having allergies for years when in fact, valuable time is being wasted on nasal sterioids, that do nothing for the "allergy". This is what happened to me.

I went back and looked at my record and never had allergies till 2007. I went in and the primary Dr said I had allergies and gave me Flonase. I returned in July 2009 in horrific head/cheek/nose, ear/neck pain and I lost my voice. Again the Dr gave me Flonase. I dropped her and the next Dr gave me Flonase again! I begged her and pleaded with her that the Flonase wasn't working. I told her I was in horrible pain and she coldly said, " I said, keep taking the Flonase and if its not gone in two months than frankly there is nothing more we can do for you." Devasting. She walked out of the room. I was left with no where to turn. I told my sister and she said to get on the email and tell the Dr that since I have an allergy, then I want an allergy specialist. The allergy specialist diagnoised me with LPR within 3 minutes.

Sever LPR pain is exactly like a burn patient only the burn agent is always present and you are never offered pain pills because no one thinks of you as a burn patient. I really don't know how I survivied the 2 1/2 year ordeal. And I'm not out of the woods. I know I still have vapors up the throat. I can't help privately wondering how long a throat can take constant small vapors before the cells change.

To this day my newer set of Drs deny the first set of regional Dr's diagnoises of LPR. LPR diagnois just means that acid vapor is hitting the throat. It doesn't necessarily tell the patient why it is happening. Drs treat it by giving proton pump inhibitors, to shut down the acid pumps of the stomach. But the problem is sphincters that have lost their ability to close off the stomach.

The stomach acid is essential to good health. The acid of the stomach is 50% of our immune system as it kills off all the bacteria and viruses that enter and drop from our mouths, ears and nose. I was one of those 30% of patients on PPIs that got a severe case of pnuemonia from high doses of PPIs the first set of Drs put me on. And was put on high doses of antibiotics and kept on high doses of PPIs all at the same time. You guessed it, the pnuemonia didn't go away. And neither my GI or primary told me to stop the PPIs. They just stared at me and said, "your very very have to take good care of yourself..." but neither of them ever thought it was the PPIs causing the pneumonia. Lucky I read and researched. When I found out it was the PPIS causing it I was put in horrible position. The PPIs gave me a 10% improvement, which was not much, and I made a gut wrentching decision to take myself off PPIs. I immediately got better from the pnumonia. But because I had been on PPIs and the gastrin hormone was pumping out more and more acid to digest food, the burning was off the charts.

I can remember also when I told the first GI that my legs felt like lead weights about he got angry and asked me why I was telling him about it. He told me to go tell the primary about it. Later, he said under his breath that he realizes now that the "lead weight" feeling I had was from the PPIs.

Frankly the way I was treated by all the Drs was a eye opening experience. I felt the whole time that I was dealing with incompetence of the highest order. And the more I researched I realized that my gut feeling was right.

I hope someday, the efforts that are put into the heart muscle repair, can be focused on the esophogeal muscles. I hope Drs/researchers/scientists are studying how to help patients escape from the horrible suffering of acid going up their esophogus. What is so sad about LPR suffering is that you are labeled as having a mental condition or that you have stress you can't get a hold of. That is totally totally incorrect. If you have anxiety while experiencing LPR its most probably because acid hitting the throat sets up and automatic response in the throat that mimicks anxiety and radiates through the whole body and your thoughts, because acid is burning through the tissue and then on to the nerves of the throat.

Like I said you are basically a burn patient on the inside and the agent never stops burning you. And you are treated like you have a mental condition. I've read of alot of people that their families get angry with them. And I think its because Drs don't educate nor view LPR as a very serious condition that causes a very uncomfortable state of being for mild LPR and unbearable excruciating pain for severe cases.

LadySue62, I live in Northern CA as well. Your D level sounds very decent level. I have never tried HCL. Maybe someone on theis message board could speak to that.

It is very interesting that you have LPR with a very decent level of D. May I ask, what is your diet like previous to getting LPR.? Do you eat alot of tomatoe/sauces, coffee, sweets, alcohol, garlic? Foods that relax the spinchters contribute to the constellation of things that cause LPR. What time do you generally go to bed at night. Are you a night owl? Are you overweight like me?! (I have to lose weight to address the intra-adominal pressure issue. I want to see if it will also help my whisps of vapors by reducing the pressure inside the adminal cavity). Although I know babies, and thin people have LPR. I'm always looking for the common denominator. What causes it? Is it something we haven't thought about?

LadySue62, when you do get your B12 score would you share it? And Nordic1 when you do your D and B12 lab work would you share your scores. I'm always trying to connect the dots and figure out what are the things that are common to all of us that suffer with LPR and the different things that work for each of us. Keep writing and experimenting! Take care.

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