Senior Member (female)
Join Date: May 2011
Location: Northern California
Re: LPR- Nearly Cured! READ THIS
Hello Hrvixou: happy to share what has worked for me. I had the same experience with the LPR diagnois. My LPR was extremely severe. I literally was burning to death from the vapor/gas/droplets hitting my throat and throat nerves. Back in 2009-2010 when I was trying to get it diagnoised they just put me on stronger and stronger PPIs. They did nothing for me. I developed pnuemonia that wouldn't go away and my blood pressure hit 180+. I look back, I was pretty sick but I was so lost in pain and trying so hard to understand what was wrong with me and I trusted my Drs to try to find out what was wrong with me. My GI in another region, entered the office in Feb 2010, the morning after I was diagnosed with pnuemonia and in quick succession said, "PPIs give 30% of the people who take them pnuemonia, I don't think the PPIs are working for you and we have to think about sending you to surgery but first we have to do a PH test." He never told me to stop the PPIs and he left the room. All my Drs were either cold, to busy or had no knowledge of how to deal with LPR (sometimes referred to as "silent acid reflux" or "burning throat") but at least these first set of Drs in another region put a name to what I had. I didn't not understand what I had as Drs don't talk very much and just give you pills. I took the Nexium off and on, balancing beteen the 20% relief they gave me and the knowledge that in me they gave me severe pnuemonia. It was a night mare. So I basically seared to death until I got to May 2010 and had a fundoplication surgery. I had no problem with the stomach part of surgery. I healed fine. But the LPR...I came out of the fundoplication surgery 10x worse! Due to a retirement and moving closer to grandchildren I had to start up with new Drs who knew even less then the prevous Drs. I tried reseaching and went down every road imaginable to try to understand what I had and what could possible be so wrong with me that no Dr could help me. The new Drs either yelled at me in front of my husband saying, "that's absurd! I never heard of such a thing..." mind you I was describing the best I could as a patient, what hurt, and the new GI got angry with me like I was making it up. I began to think I was losing my mind. I was referred to mental health and through all of the meetings I kept saying there is no stress in my life except I'm in excruciating pain in my neck, head, throat, ears, cheek, behind my nose. Finally I was referred to a new GI and ENT (after I demanded that I get new Drs or I would report them) and I got new Drs who at least tried to listen. Finally the new ENT confirmed my throat was so seared that he had to go in and do a biopsy. It was indescribable the pain and I was in and the terror I felt losing 1-2 lbs at day for 3 months. These new DRs told me they had never heard of LPR and doubted it existed. Even when I showed them the printed web page of the closest University teaching hospital who had a LPR website they were stunned. The new GI said she went to that University as a medical intern and had never heard of LPR. Words can not describe my terror or desperation. My Drs didn't have the faintest idea what I had nor even how to help me. And mind you it was well documented I had a fundoplication and had LPR. I guess I was beginning to cost alot of money and they didn't know what to do for me. I slowly gained some knowledge of what I had, just by reading and reading and researching. It took a long time for me, as I'm just a patient, with no medical back ground to understand what I had. Basically, what I could gather was that the LES & UES don't close off the stomach and acid vapor/gas/droplets rise and hit the throat, which can not take any vapor/gas/droplets of acid of any kind. The throat tissue is only one layer thick... and when acid vapor/gas/droplets hit it non-stop day after day, it begins to burn through the nerves in the thin layer of the throat. The lower esphogus is made to take vapor/gas but not the top thin layer of the throat. I understood by Jan 2011 the mechanics of what was wrong with me but I didn't understand why the fundoplication didn't work. The PH studies done after the fundo sugery showed that my acid score above the LES went from a score of 40 to .4, which is just about what most people have. So my new GI thought that maybe there was a second problem they couldn't identify that was wrong with me. So that became the sticking point. They didn't want to see me anymore as they couldn't do anything for me. All the Drs, the ENT, the GI, the Regional GI all told me I had to learn to live with the searing unbearable pain. And they never offered pain medications. Meanwhile I burned to death 24/7. Yes, it was a nightmare. My new GI offered Carafate but it didn't help me. I still burned to death. I slowly began to take over my treatment plan. I took bottles of Gaviscon...didn't work. And because the GI didn't know what to do she allowed me to do it to develop my own treatment plans. I experimented and asked for medical probiotics and took 900 billion a day. I got about 20% relief. But if anyone can imagine what a burn patient goes through, that is what a LPR patient goes through, only its on the inside of the throat the the agent that is burning never stops burning you to death. My biopsy was done but it was so touch and go because I also had a thyroid removal, which was a totally separtate issue. To go into surgery burning to death took immense courage. I told the surgeon I didn't think I could make it. I couldn't take pain medications as they burn the LPR patient to death. (LPR patients have to be so careful that medicines they take don't cause more acid to be made) I had to rely only on acetomitphin for pain, as it is the only thing that doesn't cause excessive acid to rise up to the throat. And I had to do that research myself. None of my Drs was aware that they couldn't just give me any type of medication. It had to be something that didn't burn me to death. And there's not much. Only acetomitphin fills that need. The vapor/gas acid is bad enough. During this time I began to really become uneasy with the knowledge of my Drs. I was beginning to view them as not really trained well in a very common problem (LPR) alot of people have all over the world. It botherd me first of all that they thought it was stress related. That is total bunk! From what I was reading and researched, I had an anotomical problem with my esophogeal spincters. They weren't working! And the more I read it wasn't just me, it was people all over the world who had LPR (or silent acid reflux or burning throat). And it was people of all ages! Babies, children, teenagers, young adults, mature people and the elderly and my new Drs kept telling me they didn't believe LPR existed and that they couldn't help me anymore and that there nothing more that could be done. I became quite upset and desperate. I was angry that I was made to feel like there was something I was doing wrong and that they would continue to collect my health care premiums but not continue to try to find help for me. I asked if I could go outside of my HMO and see a Dr in cutting edge treatments for LPR. They denied me and said I could go if I wanted to pay for it. To be burning to death and to have them tell you they don't know what you have and that they see no need to see you anymore is incredable to me. This is the state of our medical care today! They take our premiums but let you burn to death without an outside referral. I was angy and went home and knew just enough mechanically what was wrong with me and typed into the web, "what strengthens muscles" as I knew by then that the LES and UES are small spinchter muscles of the esphogus. Up popped articles on Vit D. The more I read the more I felt it was worth a try. I kept reseaching on the beset Vit D to take. It appeared to me to be Vit D3 drop or softgels. I ordered them right away. As soon as I took them within a few days the severity of the searing burning piercing pain began to slowly leave. I realized that probably every muscle in my body and other biological processes were improving. I also had severe shoulder joint/knee pain, where I couldn't raise my arms to shower, or comb my hair or get into a coat. But the throat/head/neck/cheek/ear/behind the nose pain trumped everything. I tried to live as normal a life as I could but I was beginning to think in 2011 that if I didn't wake up it would be ok. The pain was unrelenting until I started the Vit D3. I read some articles that indicate that that doing it by weight is helpful (although there is more to it than meets the eye). I read that 35 IU of Vit D3 x the body weight is about what one needs. So I guesstamated the Vit D I got in food and subtracted that off the sum of the formula 35 IU x lbs. I made my own treatment plan and took the dose I had calculated for myself. I found a blog of people trying Vit D3 and got on it. I got better and better. On that blog one of the bloggers, Brien, shared that he found a site where a Dr Gominak talked about Vit D. I went on it and it was so enlightening to understand why it was working and it hit me that I had avoided the sun for 40 years and because I went to night college to work on my undergraduate and masters, I had developed a habit of going to bed late after working all day. Dr. G also states in her site that sleep is very important. Together with Vit D3, sleep really makes our body function at its best capacity. Together with Dr. G and the Vitamin D Council out of San Luis Obispo I've come to understand how crucial Vitamin D is to all of us of every age throughout the planet. The latitude we live in, our age, our skin color, our weight, and our life style have alot to do with how much Vit D we make on our skin. The heavier you are the more you need. And if you are not in the equator band, the sun rays just don't produce enough Vit D on the skin for a healthy life. There are many variables to deciding how much you need. I just took my last Vit D test in Feb 2012 and I only went up 1 (one) point in 3 months and because we have had an unusally nice winter I have sat out in the sun faithfully almost every day of winter for 20 minutes and it just is not enough to get the Vit D score to 65 (Dr Gominack wrote me personally and said that is the ideal human score for Vit D is 65 for best health; and she added not to ever let it get below a score of 50). So I've pulled out all the stops the last 3 days and have upped my Vit D3 dose to 8,000 IU and my throat has really begun to feel so good. I'm realizing that it is not so easy to get one's Vit D score to 65. I've written the Vit D Council, and several other Vit D scientists and they seem quite interested in hearing that it helped my LPR and asked to refer my story to scientist working in the field. They had never heard that it could improve this illness and will be looking into it. I am only a lay person, and I don't even know how to really do scientific research, but from all that I have read over the last 18 months, and how I feel I think the Vit D3 has strengthed every muscle in my body,which includes my UES/LES, thereby helping close off my stomach from vapor/gas/droplets of acid. My legs are stonger, my joints don't hurt me anymore (I feel normal now) and so many other small positive changes in my body I've noticed. Even my blood pressure is down. I use to take blood pressure medicine for high blood pressure of 148/92 or so for 6 years. The other day I went and had my blood pressure done and I'm at 129/81 and I am not on blood pressure medicines anymore. I haven't had a cold all winter and everyone around me has been sick. I read somewhere that one Vit D researcher doubles his usual dose of Vit D3 for 3 days when he feels he is getting sick as it's suppose to improve immune fuction. I think that our modern lifestyles keeps us inside alot, in front of TV and computers and we don't roam the forests like our species evolved doing. Even our babies don't get out in the sun enough. I've read that babies suffer horrible with LPR but Drs don't know what to do for them. Mothers are going through so much with sick children and I suspect it goes back to not enough Vit D. I think Vit D test should be a routine test given to every patient twice a year, once in the dead of winter and once at the end of summer. And from what Dr. Gominak has learned and has been so good to share her observations, Vit D and sleep are vital for a healthy life. As for the Vit B12, I've read that one wants to get it to a score of 800 and that the levels below that are inadequate. But I don't know that much about it. I do that that getting a B12 test is important. My B12 came out 612. I'm working to get it to 800 and I know the standards right now are 200. My sister is 420. I told her to get it up to 800 quick as she can. I have also read that Calcium/magnesium at a reasonable amount is important too. I try to take calcium of at least 1,000 and magnesiu of 400 but I'm not well versed on it and would recommend talking to your Dr and reading new emerging research on it. There is alot of controversy on recommended doses and what I read is that they are way too low. They are so low that they keep people on the verge of illness or in state of perpetual illness. I have my quality of life back and I hope this will help other people suffering to find something that will give them their life back. Let me know how it goes for you and your son. Best, EEW
Last edited by hb-mod; 08-13-2012 at 03:55 AM.