My symptoms and my career

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DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 2/3/2013 3:23 PM (GMT -6)   
I have been diagnosed with GERD and Eosinophilic Esophagitis for 4 years now. I have had it for much longer though, just undiagnosed. I have had this constant itch in my throat for as long as I can remember, which either required me to cough or swallow or breath deeply every 3-6 seconds. If I dont cough or swallow every couple seconds, my brain sends a signal that says "Im choking," which obviously isnt true. Either way, I have to continuously swallow or cough. No doctor can explain the cause or name of this. Instead they purely focus on treating GERD or EE as best they can. Unfortunately, medications have not worked for me and there are no other treatments for GERD other than medications and surgery.

When I ask a doctor what exactly is wrong with my throat, the answer is usually along the lines of "I dont know, but you should see another doctor." GIs recommend me to see ENTs. ENTs recommend me to see pulminologists, the list is endless. I have seen some 40 or so doctors the last couple years and none of them can acknowledge the number one symptom I have which is exercise induced reflux. It is not acknowledged, and there is no specific treatment for it.

I recently met with a new GI and have stressed that I want to actually consider the surgery and that will eventually lead to more tests. I have already had a pH probe and several endoscopies but they want me to redo both of them because it has been 2 years since my last one. I will redo these two tests and then get two others before I can know if I am a candidate for the surgery or not. Between now and whatever month I might start considering surgery, what else can I do?


I am currently 18 and was diagnosed when I was 14. Through all of this I have decided that I want to devote my life to medical research towards GERD because I am tired of how few treatment options there are for the millions of people that face reflux pains everyday. I am currently a freshman studying biomedical engineering but someday I will be working towards more treatment options as an engineer.

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 2/3/2013 6:11 PM (GMT -6)   
Could you see Dr. Koufman in New York? She is ENT, knows more about complex GERD cases than anyone, I believe.

mymulligan
New Member


Date Joined Feb 2013
Total Posts : 11
   Posted 2/3/2013 8:19 PM (GMT -6)   
I feel for you. Only someone who has had LPR can explain why it's so difficult. For me it was a near constant cough. All it took was an upper resp. infection or cold and the cycle would begin.

I went through the same round of docs and it was the GI doc who put me on Nexium once a day. Now I know that the treatment for LPR is 2X a day and it might take months for it to work. Maybe they didn't know that way back when. There IS the possiblilty of relief for you. Without surgery with diet and other changes or with surgery.

I just want to encourage you that as awful as this all is, you will be ok. I lost my social life, my job and almost my marriage because I kept withdrawing more and more because I was embarrassed from the cough. Now the cough is gone and I have normal gerd which i would take any day over that cough.

Good luck to you.

DontStealMyBacon
Regular Member


Date Joined Jan 2013
Total Posts : 186
   Posted 2/3/2013 9:10 PM (GMT -6)   
I have read about LPR over the last couple months and I realize that is probably what the cough is, but reading about it didnt change anythings because it has the exact same treatment options with lower success rates. For me my cough doesnt need to be activated by anything, it is ALWAYS there. Hearing someone else cough or even the word cough often makes the urge stronger, but it is constantly building.

So I have found a few people that have that constant cough, and it is now acknowledged on pages about LPR, but there is still no page acknowledging my worst symptom. I get acid up my throat every time I climb a flight of stairs. I have had to quit every sport I have ever tried because of this problem. I still love to speed skate, not competitively but on my own. Usually I will skate for about an hour. Last week I skated for the full two hour session and I got so much acid up my throat that I lost my voice and scarred my throat for a full 3 days. When I explain this to a doctor, tey literally think that I must be lying or exaggerating, but this is the truth.
Right Temporal Lobectomy 4/5/12

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 2/4/2013 5:24 AM (GMT -6)   
Dr. Koufman has the angle on the neurological piece to this entity.

You could also consider the dietary approach. Microbiolgist Dr. Norn Robillard could help you with that, through the Digestive Health Institute. He is available for phone consultation, making him way more affordable than the MD specialists.

mymulligan
New Member


Date Joined Feb 2013
Total Posts : 11
   Posted 2/4/2013 11:07 AM (GMT -6)   
the thinking, hearing cough etc. making you cough may well be what Kaufman calls Psychogenic cough. It may be helpful to find out more about that angle. Low doses of Elavil help a lot of people.

In my case it would spark from a cold but the severity was definitely influenced by being obsessed with it. Thinking about it constantly, trying not to cough constantly.

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 2/4/2013 2:15 PM (GMT -6)   
One of my symptoms is belching, which brings up the reflux. That also increases when I think about it. But it has been reduceed significantly since I started the Fast Tract diet and my consults with Norm Robillard. But here's the funny part: part of working with him is keeping a food and symptom log. But thinking about it all the time made my symptoms worse, so I couldn't say I was getting better until after I stopped keeping the log and consults. The consults were valuable in understanging between the lines info about the diet. You might find yourselves in a similar situation if you go down this road.
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