Had some more tests done, with none of the results I expected

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 3/25/2013 6:50 PM (GMT -6)   
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.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/25/2013 9:24 PM (GMT -6)   
I empathize with you, as I have been over a similar journey...although not as lengthy as yours.  Two things you don't mention being tested for are candidiasis (possibly the source of the "white goo"?) and DAO deficiency/histamine intolerance.  Unfortunately, both of these conditions often go ignored by U.S. doctors.
 
Both of these condiions could produce some of what you're going through, although there would most likely be additional non-specific but chronic symptoms present.
 
-Bruce

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 3/25/2013 11:40 PM (GMT -6)   
Could you give me a little more information on those two conditions? Just a solid link is good. I assume that in two weeks when the biopsy results come in and my doctor contacts me, I should have an answer for what it was, and whether or not it could come back. As far as I know, the GI that did my endoscopy said that it was a side effect that can result in prolonged use of PPIs, which obviously I have been on for a while, and on max dose.

This is just about all the crap Ive been going through the last four years, and its always on my mind and always in my throat. As a result it has become my motivation to study biomedical engineering, and hopefully by the time I am actually working in the field and certified, I can start working on regrowing that valve for the esophagus.
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.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/26/2013 1:57 AM (GMT -6)   
I don't want to give you a cryptic answer, but I was criticized by one of the mods for putting links in posts.  This link: http://www.healingwell.com/community/default.aspx?f=45&m=2665624 will take you to a thread where I discuss some of this, and also placed a link to a detailed article about DAO deficiency/histamine intolerance.  A few weeks back I briefly messaged a doctor in Europe where they are having tremendous success treating GERD patients who otherwise don't respond to traditional therapies, going at it from the histamine angle. 
 
If you Google "candidiasis," or "candidemia," along with "dysphagia," "antibodies," and "questionnaire," you'll get all the information you need to get started.  If the questionnaire raises some suspicions, your next test would be for the IgA/IgG/IgM antibodies.  Depending upon those results, you would have other choices.
 
While I applaud your interest in biomedical engineering, and I completely understand your motivations, I'd encourage you to look more closely at the neurological implications of hypersensitivity, and the spectrum of autoimmune responses.
 
-Bruce

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 3/26/2013 4:51 PM (GMT -6)   
Bruce-

That wasn't for putting in links. That was for putting in links and then giving a long summary of the linked info. Everyone is more than welcome to put in links.

Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/26/2013 6:08 PM (GMT -6)   
Hi Bill --

That's why I was confused, because I didn't do what I understood would have been described as a "long summary." I only gave brief summaries from the linked pages...not long at all. Certainly not as long as others have done.

-Bruce

Alexxx
Regular Member


Date Joined Jan 2012
Total Posts : 29
   Posted 3/26/2013 8:23 PM (GMT -6)   
Hi!! i just got three tests last week since i had been dealing with "something stuck in the throat" feeling and some burning for more than a year. Tried PPIS and did not work at all. Tried all natural remedies and they did not work. Finally my endoscopy showed that my stomack was full of bile so that is why medicine was not working and the drs kept trying to give them to me. The treatment is different and there are not many choices. I was put on domperidone but im not taking it since i have cervical dystonia and although it not a likely symptom to happen, it can cause involuntary movements. And was put on carafate 1 every 6 hours...im kind of researching for natural alternatives because it makes me feel dizzy and i just dont feel is helping.. also it has aluminum (even when just a small part goes into the system) and i just spent a whole year doing a candida and metal detox diet (mercury and aluminum) and supplements... anyway i have a very good ND and i have an App tomorrow so well see if he has some options. DOnt just take medicine.. get all the proper testing. I got a 24 ph metry, esophagueal manometry and endoscopy. I dont know if there is a test for bile but if you have bile in your stomach you are very likely to be refluxing it and you can see that in an endoscopy. Take care and good luck!!!

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 3/27/2013 8:20 AM (GMT -6)   
Bruce-

Will you please email me. It's the envelope under my user name.

Thanks.

Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 3/27/2013 9:01 PM (GMT -6)   
So I still have to wait a while to get the biopsy results, but for now this is where Im at. Ive had all of the tests listed above, and I was expecting the last round to be pre-op tests to start talking to my doctor about surgery. I was not expecting to find a small hiatel hernia, the return of my esophagitis, and the white fungus and bacterial infection. I also wasn't expecting to be so highly affected by going off of PPIs while taking the pH probe. Can anyone predict/tell me anything about the direction I'm going? I will find out more from my doctor soon, but what should I expect from the results I have gotten from these recent tests?


I should also mention that I have a major problem that my dentist notified me of; the layer of enamel that is supposed to be on the top of my teeth has been completely melted off, most likely by acid. This is not a common problem, so I have not been able to find much information on treating it. Can anyone relate to this or find me any relevant information sources?
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.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 26, 2018 9:25 AM (GMT -6)
There are a total of 3,006,752 posts in 329,392 threads.
View Active Threads


Who's Online
This forum has 161849 registered members. Please welcome our newest member, Michael007.
185 Guest(s), 12 Registered Member(s) are currently online.  Details
HappyRick, Cigafred, Startech, mattamx, PeterDisAbelard., Calibren, 1000Daisies, Garion, Lymie24, Stevo68, LJohn23, colja