I've been diagnosed with GERD for 4 years now, but I've been dealing with symptoms of GERD and LPR for as long as I can remember, with increasing intensity over time. I also have Eosinophilic Esophagitis, which sounds like a problem, but has become more of an annoyance than an issue. Reading down the list of symptoms, I have almost all the symptoms of GERD and LPR, and I have seen many doctors to try to get it treated, but all I have really done is run around in circles seeing new doctors all the time. The biggest symptoms I suffer from daily are the classic heartburn pains, the sore throat that causes me to cough or swallow every couple seconds, and something called exercise induced reflux
. Because the later one is not recognized by any of the doctors I have seen, every appointment I have ends with a referral to see a new specialist. When I explain it as a breathing problem, every single doctor wants to call it asthma, but its not.
I have been sent to GIs, ENTs, vocal chord specialists, and a pulminologist. All of them have been able to rule out the cause I went in to get tested on, whether it be asthma, vocal chord dysfunction, or something else strange. None of them will acknowledge the fact that any bit of exertion sends acid straight up my throat, so now I refer to it as exercise induced reflux. I will continue to see more doctors, but I still have yet to find one that will even believe me when I say climbing a staircase causes me to lose my breath because of reflux. I am 18 now, but I have been seeing doctors for all of this since I was 14. Being the age I am, I would love to be physically active or at least able to exercise in some way, but at this point I have basically become completely inactive. It is extremely discouraging that I live on the top floor of the only building on campus without an elevator and simply climbing those three staircases to get to and from my room sears my throat. I had one pH probe shortly after being diagnosed, and it showed I have reflux, but the report said I only had moderate reflux, since I sat at home and did nothing instead of having a regular, active day.
For the esophagitis, I have seen several EE specialists and have had several tests. The treatment methods I was put on for EE involved testing what foods I was allergic to and removing each one of them from my diet, one by one, over the course of months. This guess and check method involved guessing which foods should be removed next and checking the current condition of my esophagus using an endoscopy. After five endoscopies and about
two years of diet modifications, I finally had a clean esophagus, clear of all signs of esophagitis. When I got the results, however, I was extremely surprised since I felt worse than I did when I started my treatment for it. My symptoms from GERD and LPR have been and still are so much stronger than my EE symptoms, so I have had the same exact pains and symptoms with and without the EE.
Since that clean endoscopy two years ago, I have been mostly avoiding the foods that we think trigger my EE (milk, soy, and rice), but since I do not feel a significant difference when it was cured, I did not end up avoiding some of the other foods that might be triggering it again (the whole list is corn, beans, peas, shrimp, rice, nuts, milk, soy, gluten, and eggs). I also have no other allergic reactions apart from the esophagitis and being lactose intolerant, so I have had no other incentive to avoid every soy ingredient in every processed product.
Around that time, my GI said in a follow up appointment that there was nothing else she could do, now that I was on the max dose of prevacid, and that there was no reason for me to see her anymore. I would have pursued another GERD specialist after that, but after seeing some 50 doctors and not having any answers, I did not have much hope in the several month process of seeing a new doctor and needing two to three appointments before being officially told that they have no answers. This was also the point that my epilepsy had gotten much worse. I usually averaged around one to two seizures a month, and had varying numbers of seizures my entire life. After all this, my seizures had gotten to happening every week, to happening five times a week, and new medications I tried gave me side effects ranging from blocking my ability to think to making me suicidal. From that point two years ago to about
a month ago, I focused purely on getting my epilepsy better and stopped seeing any doctors for reflux. Luckily, I was able to get proper treatment by getting brain surgery and have been seizure free since!
A month ago I saw a new GI for the first time in two years, and explained my entire medical history over the course of about
an hour. At this point, the folder holding all my medical documents is thicker than most of my college textbooks. The new doctor listened to most of what I had to say and ordered a barium swallow test that I had not done and another endoscopy and pH probe since it had been over two years since I had done them. The barium swallow test was a couple weeks ago and showed I have a small hiatel hernia, which I had never really thought about
or been asked about
before. The endoscopy and pH probe were both last week, and even though I'm still waiting on the biopsy results, the GI that did the operation told me the general results. I already got pictures and she told me that they found a white fungus-like substance in my esophagus, a bacterial infection in the top of my stomach, and the return of my esophagitis. She said the white goo probably wasn't fungus, but 'washed off.' She also said the infection looks like H pylori, but we are waiting on the biopsy results for exactly what both of those are. I thought I knew a lot about
GERD and EE at this point, but all of this is entirely foreign to me.
Before the two operations last week, I was told I needed to be off of prevacid, and I needed to take a week step off of them and have another whole week between going off of prevacid and having the tests done. During that week, the combination of the intense rebound that first week and not having the prevacid even after the rebound proved that I do indeed need it for my reflux pains. I was also told that the infection and white substance were both side effects of being on PPIs for a long time. So now I am upset that I am really having bad side effects from taking prevacid, but I also need to stay on it to help my pains.
A couple questions:
My pH probe and the severe rebound I faced coming off of prevacid proved that I do indeed have acid reflux. Does this mean that I cannot possibly have bile reflux, or is it possible that I have GERD, LPR, and bile reflux? When I did a search to see what tests can be conducted to test for bile reflux, it mentioned that an endoscopy or pH probe can be used to rule out acid reflux, but I'm not sure if you can have both.
When my doctor said the fungus-like white goo 'washed off,' does anyone know what this means? Is it gone forever/for a long time or do I have to worry about
it? I assume I will get an explanation with the biopsy results, but for now I am entirely confused.
The other times I have asked this, I haven't been able to get any responses. I don't expect one this time, but I might as well ask anyway. Is there by any chance I specialist that anyone knows of that would be able to help my exercise induced reflux? I have seen at least 50 doctors in the last 4 years in search of one that will have information on it, without success.
I have typed up a few topics, but never one this long, since this has just about
all of my relevant reflux history. Hopefully there are some people on this forum that enjoy reading long posts!
Right Temporal Lobectomy 4/5/12
Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.