Need advice please. Very desperate....

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lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/22/2013 3:43 PM (GMT -6)   
Hello to you all.   There is so much misery with digestive problems and none of my friends seem to understand.  I have a long horrible story that started with the Bravo probe.  For some reason when i had the probe place 8 months ago my larynx swelled up.  I have been to dozens of doctors and had dozens of tests.  The last test i had was a Restech ph moniter which wasnt calibrated correctly so i have to do it over.  This is how my luck has gone now for months.  The tests either come back as normal or dont work. 
 
Anyway,  my new ENT looked into my larynx/voicebox yesterday and said it is very swollen.  This makes me feel like im gagging which i was put on ativan for.  The ativan has caused major health problems including a severe dry throat which causes throat pain (one of many catch 22's in in)  I have been weaning down the ativan which has helped the dry throat pain, but now i can sense the swollen larynx more which causes me to swallow constantly.   This has created a severe sore pain all the way down the esophagus into the stomach.  I just cant stop swallowing because the throat is swollen.  I have no idea what to do.  I have a small hiatel hernia and im afraid the dry swallowing is making it worse.   I probably have silent reflux, but i have failed ppi treatment and i tried the Dropping Acid diet.  Nothing has helped.   I feel like a lost cause and i am in misery beyond belief.  Any advice would be appreciated.  I had no problems before the Bravo probe so i thought it was nerve damage, but i dont think that explains the swelling of the voicebox.   I also havent been able to talk more than a few minutes here and there in 8 months.  Too painful. 

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 11/22/2013 10:23 PM (GMT -6)   
Try the fast track diet. It's listed on this forum.
If one diet doesn't work try something else.

corgislover
Regular Member


Date Joined Oct 2013
Total Posts : 22
   Posted 11/23/2013 1:45 PM (GMT -6)   
Here's more info about the Fast Tract Digestion (Heartburn) book. Author is Norman Robillard, Ph.D., Founder of Digestive Health Institute. Front cover says "A Revolutionary Diet System to Treat and Prevent Acid Reflux Without Drugs. I ordered it from Amazon last week, got it yesterday and am looking through it this morning. Looks promising. I ordered it because several people commented that following the program outlined in this booked helped their acid reflux (even when the Dropping Acid diet didn't). He also has a website: digestivehealthinstitute.org.

I'm very sorry to hear you are in so much pain. PPI treatment didn't work for me either. I've had most of the tests (LPR and GERD confirmed by 24-hour ph test). I'm trying dietary changes now. If I find something that works, I'll be sure to post it!

jamosca
Regular Member


Date Joined Aug 2013
Total Posts : 162
   Posted 11/23/2013 2:06 PM (GMT -6)   
How about trying h2 blockers like ranitidine ?

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/23/2013 6:46 PM (GMT -6)   
Corgislover, i looked up that diet awhile ago but couldnt find much information on it. Please post if you find it helpful. Thank you. Jamosca, is ranitidine a histamine blocker?

corgislover
Regular Member


Date Joined Oct 2013
Total Posts : 22
   Posted 11/23/2013 7:14 PM (GMT -6)   
Will do lobstahguy. Check out the comments at Amazon.com for this book. They are pretty encouraging. I'm half-way through the book at this point (I started it this morning). Sure hope it works. For both of us!

In the meantime, I wonder if slippery elm would help the throat issue? I've seen several people mention that they use it on this forum. Might be worth researching it anyway.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/23/2013 8:42 PM (GMT -6)   
Corgislover, I tried slippery elm lozenges but it didnt seem to help. I did the Restech test last week and it wasnt calibrated right so i have to do it over again. Just my luck. I think i have severe reflux and my voicebox is very swollen. I already failed the ppi's so i am desperate for a natural solution. To complicate matters, i was put on ativan which has caused horrible withdrawal symptoms including a severely dry throat, which adds to the pain. Im weaning down, but not completely off yet. I took a benadryl today to help slow downn the mucus in the throat, but that is also going to dry me out and make the throat more painful i suspect. Im caught in a never ending list of catch 22's. What is your story? What are you symptoms? Thanks

corgislover
Regular Member


Date Joined Oct 2013
Total Posts : 22
   Posted 11/23/2013 11:49 PM (GMT -6)   
My problems started almost 3 years ago with asthma. I had childhood asthma but no symptoms of asthma as an adult until the end of 2010. An incident with boric acid at work resulted in the asthma symptoms. I went to a lung specialist who treated me with inhalers and a host of other meds. The meds did not help me, in fact, I developed thrush and eye problems. Shortly after that the mucus (copious amounts), and acid reflux. Now it's up in my sinuses too. I went on an elimination diet, stopped eating dairy and wheat products, cut way back on sweets and lost about 60 pounds. The asthma symptoms subsided. But the reflux and mucus is still with me. I have a dry, sometimes sore throat but not the severe pain you and others have. I've had GI and ENT docs and have gone through 3 primary care physicians in 3 years. I've had most of the reflux tests now and have been on 3 different kinds of PPIs. The ENT says I have GERD and LPR and wanted me on more PPIs. I went on Prilosec (40 mg morning; 40 mg night). I had a very bad reaction to it and stopped as a result. My primary care physician wanted to try one more (asiphex) but I decided not to do any more PPIs. I've had reactions to all of them and I'm convinced they make the reflux worse. The author of The Fast Tract seems to agree. It's an interesting book with a different spin on what causes reflux. It makes sense to me. I'm sick and tired of being sick and tired. I know you understand that. I'm reading a lot of stuff. This forum has been so much help. I've gone back months and read all of the comments trying to find something that has worked for someone. I have a list of things I'm going to try. If I find something that works, I'll definitely share it. I'm looking for a natural solution too. After 3 years, I've pretty much lost confidence in doctors to get me out of this, but I think there is an answer out there. Not giving up yet!

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/24/2013 9:03 PM (GMT -6)   
Corgislover, we have similar stories. I hope you find something that works and i am hoping the best for you. This is a horrible problem to have and people just dont understand how bad it can get. Im sick and tired of being sick and tired too. How do you handle the mucus mentally? Its really getting to me.

corgislover
Regular Member


Date Joined Oct 2013
Total Posts : 22
   Posted 11/24/2013 11:33 PM (GMT -6)   
lobstahguy, the mucus is the hardest for me too. It's ever present. Sometimes it's very thick and the only way to handle it is to get rid of it by spitting it out. One doctor wanted to see it so I collected it one morning and had an entire cup. Then when I took it in, he asked me if I had added water to it. In short, he didn't believe me. Why would someone make something up like that? I just don't understand these doctors. The mucus gets to me too. It took research on my part to find out that it is the body's reaction to the acid. None of my doctors even took the time to tell me that. The PPIs made the mucus worse and much thicker. They also made the acid worse. I wish I could tell you I have found a way to make it better but so far I haven't. Although for a while, it was better, but it never went away. Mine is worse in the evening and morning. After a few minutes laying down to go to bed, it stops. Certain foods make it really bad. I tried apple cider vinegar. It helps but I can't take much of it because it makes my throat sore. Same with lemon juice. I'm going to try the Fast Tract diet next. I'll let you know if it helps. If it doesn't, I have a few other things I'm going to try. I've been corresponding with a woman I met through a forum who has had success with a vegan diet. She had copious amounts of mucus and acid too and she says it went away when she went on a vegan diet. She suggested a movie called Forks Over Knives. I watched the movie and got the cookbook about the same time I heard about the Fast Tract diet. Fast Tract is not a vegan diet. So two different things to try. It's not a stretch to become vegan for me. I eat very little meat as it is. Who knows? Maybe it will help and I can kiss this mucus goodbye!

You're right about people not understanding how bad it is mentally to go through this. That's why I love this forum. These folks do understand. Many of them are much worse off than I am. It makes me sad. But I don't feel so alone now. I'm learning to listen to my own voice more than I used to. I'm getting stronger about speaking up to my doctors when I need to. And I'm not as devastated when a doctor gives up on me. It seems like a common thread that many people have gone through.

I'll let you know how the diet(s) go. I plan to start Fast Tract next week. Wish me well!

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/25/2013 7:42 PM (GMT -6)   
Corgislover, ive seen the movie Forks Over Knives. Amazing. I have tried every diet under the sun and nothing helps. My mucus happens instantly as soon as i swallow food or water. It seems to be a neurologic response sometimes. I also think my swallowing is neurolgic sometimes as well. Im also going thru ativan withdrawal which can cause problems like that. But i do believe i have LPR. I think im in big trouble because there is no way i could handle the surgery. Is your stomach or esphagus hurting from doing all of that swallowing?

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 11/25/2013 7:43 PM (GMT -6)   
justpassingthrough said...
Hi lobstahguy/corgislover
Inflamation and breathing difficulty from LPR is mainly caused by Pepsin.
It can be denatured by alkaline water over pH 8.0
To test for Pepsin in your saliva take a PEPTEST.
So many steroids have been prescribed wrongly to LPR patients by docs who believe they have asthma.
Happy to send you my notes on this subject if you email me
Best JPT   Hello,   ive tried the alkaline water.  Didnt help.  Where do you get the peptest?

corgislover
Regular Member


Date Joined Oct 2013
Total Posts : 22
   Posted 11/25/2013 9:05 PM (GMT -6)   
Lobstahguy, Wow. We really have traveled the same road. Did you try giving up meat to see if it would help? My stomach has never hurt. My esophagus gets a little sore sometimes but I haven't experienced the pain you have. Maybe because I spit out a lot of the mucus. It's so thick, it's hard to do anything else. The first thing my ENT told me was "no more spitting!" But I haven't been able to take her advice completely when the mucus is thick. Do you keep a daily log of what you eat and how you feel? I'm going to do that when I start the Fast Tract diet. There was a time about 6 months ago where I didn't have as much mucus. But because I didn't write anything down, I don't have a record of what I was or wasn't eating at that time. I always think I'll remember, but I don't. My acid reflux is not as bad as it used to be so some progress there. I think it has helped giving up dairy products and wheat. I don't eat as much fruit either because there is a very quick mucus response to most fruit. The worst was a Bloody Mary I tried to drink with my mom one Mother's Day. OMG - it was horrible! The spices, the tomato... So I'm focusing on the food. I'm pretty sure I have LPR too. My sinuses are definitely affected. It's like a puzzle with pieces missing. I feel like I'm missing something. I sure hope I don't have to go the surgery route. I can't imagine not being able to vomit or belch for the rest of my life! Especially with digestive issues. From what I've read on this forum, some people have been helped with the surgery and others haven't. I just hope I don't have to go there. But I've learned to never say never.
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