How do I convince others I have LPR?

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Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 3/17/2014 3:49 PM (GMT -6)   
This has been a considerable source of stress for me this entire time, and I think it's best I just ask about it. Dedpite negative tests - ENT scopes, spit tests etc - I still have horrible LPR symptoms. My GP barely believes me, my family thinks I'm craving attention/it's all in my head and even the people behind Peptest have their doubts. But seriously. I'm burning. I can't take deep breaths. I'm almost choking on my own mucus. And it all starts/worsens when I burp. HOW CAN THAT NOT BE LPR? I don't want to be one of those people who suffers for years because nobody believes the symptoms are real.

I know I have a Restech probe coming up, but there's a risk it may come back false-negative, or may not even happen at all. I'm being denied surgery regardless of the outcome - I'd gladly risk the pain it causes to be free of LPR, but nobody else sees it that way - and all the PPIs/H2 blockers in the world can't help me. Actually they made me worse..! So how do I convince others I am suffering when I not only fail to respond to conventinal treatments, but I also fail to get a firm diagnosis (despite it being bleedingly obvious that it's LPR)?

Half the problem is that I already panic about my health a lot, and having LPR scares me witless. I still delude myself into thinking stress is the cause. It's not. All the science journals prove it, but I still cling to it like it's my last piece of hope and sanity. That obviously doesn't help my case, does it? Last year I also worried a lot about my heart. Looking back on it, that was probably all my LPR too, I just didn't realise. When the world thinks the symptoms are all "made up for attention" though, how do you make a case saying they aren't?! I can show all the books, journals and forum posts I like, but I keep getting told things like "but they're not REAL doctors, they're conning you, they're putting it deep-set in your head, they're from overseas" and some worse things I dare not post in case I offend someone..! (The overseas thing already treads on thin ice)

Sorry for the rant; I'm on the verge of giving up hope entirely here, and I'm aware I need outside help, I just need help convincing someone to believe in me for the first time in my life. Any advice you can offer would be much appreciated.

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/17/2014 4:46 PM (GMT -6)   
Daxter. I feel so sad to read about your health . Have you researched the role of pepsin as a cause of your symptoms. This might help
Our docs don't seem to believe in it. That means they don't stay current, once they get out of medical school. Ours hadn't heard about rebound either, but a year later they were familiar with it. Keep searching for the right knowledgeable health professional. Kind regards.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3216344/

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/17/2014 4:54 PM (GMT -6)   
Daxter. This too-- you may already be aware of this information about high pH water and it's effect on pepsin which cause LPR. If you know about it already then I apologize for repeating it. It does take time to help but it's worth a long term try. Buy the water or the pH drops. Never be without them.

http://www.ncbi.nlm.nih.gov/pubmed/22844861

Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 3/18/2014 6:05 AM (GMT -6)   
Pat Fill said...
Daxter. I feel so sad to read about your health . Have you researched the role of pepsin as a cause of your symptoms. This might help
Our docs don't seem to believe in it. That means they don't stay current, once they get out of medical school. Ours hadn't heard about rebound either, but a year later they were familiar with it. Keep searching for the right knowledgeable health professional. Kind regards.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3216344/


Pat Fill said...
Daxter. This too-- you may already be aware of this information about high pH water and it's effect on pepsin which cause LPR. If you know about it already then I apologize for repeating it. It does take time to help but it's worth a long term try. Buy the water or the pH drops. Never be without them.

http://www.ncbi.nlm.nih.gov/pubmed/22844861


Thanks for replying. Yeah, I took the rapid spit test for pepsin - collected over 15 samples altogether - and tried low-acid diets too. RDBiomed have noted how many negative spit samples I've given them, included ones where I thought I'd brought up my entire stomach! I've had an alkaline water filter jug for the last 8 months, and before then I always bough alkaline water bottled from my local supermarket. Cost me a lot to keep buying little bottles though..! XP Unfortunatly they haven't made much of a difference. Sometimes the alkaline water itself makes me burn, if that sounds weird!

I used to suffer from asthma when I was young, but this isn't the same. I don't think it's hyperventilation either as I have to clear my throat to take a full deep breath, and I don't get the usual tingly hands/dizziness others do. If I could just figure out why I get so much mucus I could probably fix myself. It just doesn't help when burping makes it worse.

Teeth cleaner
Regular Member


Date Joined Mar 2013
Total Posts : 88
   Posted 3/18/2014 7:14 AM (GMT -6)   
Daxter,

I have the same problem as you!
Excessive burping, burning and chronic
throat clearing! Many test have been
mostly negative. My suggestion is
to see an ENT for a throat examination.
I saw an Areo Digestive specialist in my
area to rule out anything bad with
my throat. Fortunately, throat is
good but I still have horrible symptoms
all day. I also have health anxieties just
like you! I have resolved that it is
what it is. Acceptance is really important
when you can't find answers. I do take
Zantac with a small dose of Xanax 2 times
a day which is an anxiety medication. It
does help a bit. I know exactly what you are
going through! I believe you and don't
loose hope. I pray that one day we find answers!

Gondore
Regular Member


Date Joined Jan 2014
Total Posts : 119
   Posted 3/18/2014 7:25 AM (GMT -6)   
Daxter, have you had the 24 HR PH test yet?

Rayday
New Member


Date Joined Mar 2014
Total Posts : 8
   Posted 3/18/2014 4:41 PM (GMT -6)   
Daxter,

I totally relate to your frustration. Over a six-year period I had all the usual tests my GI could think of but could not prove reflux. I then went through the same thing with a second GI with the same result. Then saw various specialists and recently saw an ENT specialist who carried out a nasal scope exam and saw inflammation and scarring of the larynx area. She asked me if I had ever had my adenoids out which I haven't. She went on to say "that's odd because I can see scarring, something I have never seen in a patient". She then conferred with my GI and between them decided to refer me to a general surgeon.

The surgeon studied my very long list of tests and then asked if I had ever had a barium meal test. I replied that I had not. He sent me for the barium test but requested that the radiologist call him immediately before he carried out the test so that he could "direct" the test. He had the radiologist have me lay on my back, slightly to the side on the x-ray table.

Next he asked me to drink the barium meal, waited a little while and then tilted the table back so that my head was lower than my feet. This brought me to the end of my six-year search to prove reflux when all along I was certain it was taking place. The radiologist informed me then and there that he could see the barium meal traveling out of the stomach and all the way up to the very top of the throat. With this long sought after medical confirmation, the surgeon was able to offer me Nissen Fundoplication surgery if I wanted it.

I have set up an appointment to see my Gi again after the surgeon suggested getting his opinion on these findings and perhaps carrying out another endoscopy (my 4th to date) to see if the gastritis, stomach inflammation and lower esophageal inflammation has improved or worsened since the last endoscopy.

After six years on and off PPI's and H2 Blockers, it has not produced any noticeable healing - the stomach pain and internal burning is as strong as it was six years ago. I have not been able to sleep through the night for those six years due to the fact that the stomach pain wakes me every time I turn on either side, or my stomach - I am totally sleep deprived and exhausted by what seems like a very, very long journey.

Incidentally, my diet has been beyond reproach throughout this time and long before that, supervised by one of this country's leading experts on nutritional science - he is also my primary care physician.

Hope this helps in some way.

Post Edited (Rayday) : 3/18/2014 4:10:34 PM (GMT-6)


Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 3/19/2014 12:10 PM (GMT -6)   
Rayday said...
Daxter,

I totally relate to your frustration. Over a six-year period I had all the usual tests my GI could think of but could not prove reflux. I then went through the same thing with a second GI with the same result. Then saw various specialists and recently saw an ENT specialist who carried out a nasal scope exam and saw inflammation and scarring of the larynx area. She asked me if I had ever had my adenoids out which I haven't. She went on to say "that's odd because I can see scarring, something I have never seen in a patient". She then conferred with my GI and between them decided to refer me to a general surgeon.

The surgeon studied my very long list of tests and then asked if I had ever had a barium meal test. I replied that I had not. He sent me for the barium test but requested that the radiologist call him immediately before he carried out the test so that he could "direct" the test. He had the radiologist have me lay on my back, slightly to the side on the x-ray table.

Next he asked me to drink the barium meal, waited a little while and then tilted the table back so that my head was lower than my feet. This brought me to the end of my six-year search to prove reflux when all along I was certain it was taking place. The radiologist informed me then and there that he could see the barium meal traveling out of the stomach and all the way up to the very top of the throat. With this long sought after medical confirmation, the surgeon was able to offer me Nissen Fundoplication surgery if I wanted it.

I have set up an appointment to see my Gi again after the surgeon suggested getting his opinion on these findings and perhaps carrying out another endoscopy (my 4th to date) to see if the gastritis, stomach inflammation and lower esophageal inflammation has improved or worsened since the last endoscopy.

After six years on and off PPI's and H2 Blockers, it has not produced any noticeable healing - the stomach pain and internal burning is as strong as it was six years ago. I have not been able to sleep through the night for those six years due to the fact that the stomach pain wakes me every time I turn on either side, or my stomach - I am totally sleep deprived and exhausted by what seems like a very, very long journey.

Incidentally, my diet has been beyond reproach throughout this time and long before that, supervised by one of this country's leading experts on nutritional science - he is also my primary care physician.

Hope this helps in some way.


Interesting, especially about the barium. I was practically tipped upside-down during mine, but nothing showed up. It just gets my goat when everyone - from close family to psychologists to specialists - tells me it's "deep set in my head" and that "anxiety alone can cause reflux." It's not, and it cannot. The evidence in the journals doesn't lie, especially when it's backed up through many years of research.

Gondore said...
Daxter, have you had the 24 HR PH test yet?


Not yet, as I mentioned it's still upcoming. I've been on a waiting list for 6 months now.

Post Edited (Daxter) : 3/19/2014 11:15:20 AM (GMT-6)


Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 3/22/2014 6:03 PM (GMT -6)   
Gotta bump: I'm still getting worse. If I so much as have a glass of water, my throat closes over and I CANNOT BREATH IN. It's still happening now, and all the meds in the world don't help. I took a bottle if alkaline water and that failed too. Then I tried a single sip of the same alkaline water, and the tightness vanished. It then came back again as soon as I took Gaviscon Advance. What the hell?! This has never happened before, and the extra mucus and burping don't help either. Alkaline water has always made me worse or had no improvement-effect before, so why would it work now?

Also lying down can relieve my symptoms a little too. Am I just overthinking this? I already took Peptest under these conditions and it was clear, so... :p

toritone
Regular Member


Date Joined Apr 2014
Total Posts : 40
   Posted 4/1/2014 10:28 AM (GMT -6)   
Change doctors. It took me over 30 years to find a doctor to finally diagnose me properly. My chief complaint, has always been a chronic cough. I have been diagnosed, incorrectly, as allergies, sinusitis, asthma, to name a few over the years by many different specialists. I finally found Dr. Jaimie Koufman of the Voice Institute of New York, who had me crying in her office, because finally a doctor that not only knew what she was doing, but actually listened to me and all my symptoms.
I am not sure where you are from, but I know many people travel for her, at lease read her information and bring it to a doctor. She has opened a new Reflux center, and since been on Dr. Oz. You can see her video on his website. According to her, silent reflux is more understood by an ENT and not a gastroenterologist.

I not only have "silent reflux, but nerve damage, and my larynx is slightly paralyzed that makes me cough uncontrollably.
Although, I have been taking anti-reflux medication and an antidepressant for the nerve damage, she is performing another PH test on medication and based on the results, recommending surgery.



Bottom line... Look for a doctor that will listen

Good luck to you

Toni-Ann

Post Edited By Moderator (opnwhl4) : 4/1/2014 9:22:15 PM (GMT-6)


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/1/2014 10:38 AM (GMT -6)   
Daxter,
 
Good Morning,  have you had the 24 HR PH test yet? I am waiting to hear your outcome.
 
As far as convincing your family or friends that you have a dx of GERD, don't try so hard as you never have to explain yourself to others or lobby for their understanding.
 
WE believe you here in the forums.
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

Daxter
Regular Member


Date Joined May 2013
Total Posts : 406
   Posted 4/1/2014 11:52 AM (GMT -6)   
stkitt said...
Daxter,
Good Morning, have you had the 24 HR PH test yet? I am waiting to hear your outcome.

As far as convincing your family or friends that you have a dx of GERD, don't try so hard as you never have to explain yourself to others or lobby for their understanding.

WE believe you here in the forums.


By pure coincidence, my Restech probe has just begun 1 hour ago. And... I am gagging a lot! Is that normal? Also what is the Sx reading on the mini-screen, and what kind of pH should I be watching for? (Currently 6.5-6.1 on my own saliva)

Post Edited (Daxter) : 4/1/2014 12:31:46 PM (GMT-6)


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/1/2014 12:01 PM (GMT -6)   
D,
 
Good to know your an hour into the test.  I believe I have read of others gagging while the probe is in place. I have never had the probe test but tons of people here have so hopefully they will answer your question re the information on the mini-screen.
 
Sending you lots of good vibes.
 
Kitt
 
 
~~Kitt~~
Moderator: Anxiety/Panic
and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

tnfilmgal
Regular Member


Date Joined Mar 2014
Total Posts : 22
   Posted 4/1/2014 1:20 PM (GMT -6)   
Good luck Daxter..let us know how it went

CAGU
Regular Member


Date Joined Apr 2014
Total Posts : 315
   Posted 4/1/2014 2:16 PM (GMT -6)   
Hi Daxter.
A gastroenterolgist does not diagnose LPR. They do not look at your throat. An endoscopy only looks at your esophagus not the throat. You have to go to an ear, nose, and throat doctor, which is called an otolaryngologist. They will peform a procedure in the office, which only takes 5 minutes. The put a thin tube down your nose to your throat. The thin tube has a camera on the end of it. It does not hurt. I've had it done twice, by two different ear, nose, and throat doctors.
I was in the same situation where my gastroenterologist did not believe I had silent reflux. But after two ear, nose. and throat doctors confirmed that I had it. I decided to find a new gastroenterologist.
Also, Proton pump inhibitors are not the answer to the problem, they only treat symptons and not the problem. There are serious side effects of these medications.

CAGU
Regular Member


Date Joined Apr 2014
Total Posts : 315
   Posted 4/1/2014 2:20 PM (GMT -6)   
Also an ear, nose, and throat doctors will tell you that a gastroenterologist cannot diagnose LPR with an endoscopy or a upper GI series.
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