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If its not esophageal reflux, then what is it?

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Posted 8/5/2010 6:47 PM (GMT 0)

 I had a EGD in 2006 and was put on Protonix 40mg once a day. I think there was a small area on my esophagus, the reason for the medicine. March of 2009, my insurance wouldnt pay for Protonix so they switched me to Nexium 40mg.  Then in August I had a bad attack of asthma, was given predisone ,albuterol for nebulizer and inhaler. I rinsed mouth afterwards too) . My throat started burning bad with the meds.  My asthma lasted for about a month and throat got some better. I went to my allergist and he said he thought it was acid reflux, told me to continue med for acid reflux.  He did skin testing and I am back on allergy shots.  Then in October I got food poisoning was put on Cipro for a week.  Throat felt like it was on fire. It wasnt at back of throat, it was further down. I saw my Primary Care Doctor which sent me to a GI.  I had started having spasms in my throat, was having problems swallowing etc. She did a EGD and found no hiatal hernia, non -erosive gastritis, and a polyp on fundus in stomach, which she removed and it was benign. Also, stretched my esophagus. Upped my nexium 2 xday. I have lost about 30 lbs. (which I needed to, but not like this). I was still having burning in throat and had started hurting a little on my right side under ribs. I went for a ultrasound and hidascan and it was functioning but real low, January of 2010 had gall bladder removed.  Throat was still burning.  I had another opinion from a gastroenterologist and a ENT. both said it was acid reflux. I started back on Protonix 40mg 1xday and prevacid 15mg 2x night . Last month I was sent to a surgeon who does the Nissen and he ordered a manometry and 24 hr ph probe.  Went back last week for results and they were normal. He said I had no esophageal reflux.  He said the Ph probe scale showed a 4. If it had been like 14 it would be abnormal and he would be doing surgery, but since it wasnt, no surgery.  I asked why does my throat burn and when i wake up in mornings feels like a sore throat but further down.  He couldnt give me any answers, sent me back to my GI. Waiting on appt to see her.  I quit the the PPI's last week since he said I dont have esophageal reflux. I did ok for a few days, but today im thinking about going back on them...cant take the burning. Also, I have been watching what I eat. Trying to eat more alkaline foods, which has helped some.  Oh, I never had the acid come up in throat or mouth.  Could this be silent acid reflux or what?  Has anyone had this diagnosis before?

Posted 8/5/2010 7:29 PM (GMT 0)
Hi Ladybell welcome to healing well. I don't know what's going on with your throat but for sure someone here will have experienced your symptons and will reply. Are you able to get hold of any New Zealand Manuka Honey? If you can, 4 teaspoons of that a day (1 before each meal and 1 before bed) will help sooth and heal your throat.
Sorry you are feeling so horrible hope you will get some relief soon.
MM
Posted 8/5/2010 10:03 PM (GMT 0)
It sounds like Silent Gerd.
I'd find a different GI who will do another set of testing. Ask for a stomach emptying test.
I didn't see where you had a barium swallow. Ask for it, too.
Posted 8/6/2010 2:05 AM (GMT 0)
Moo's Mum

    Thanks for replying. I have never heard of that honey before. Will try to see if I can find it.  Thanks!

Posted 8/6/2010 2:17 AM (GMT 0)
Hi Couchtater,

   Thanks for your reply.  Yes, I think its silent gerd too.  I am going to ask for a barium swallow when i go back to GI.  I dont know why she didnt request that test too. Even though I dont like drinking that chalky stuff.  tongue   We only have one hospital here, and had to drive an hour away just for the manometry and ph testing. She was wanting to send me to another town just over the state line  for a week study, but insurance wouldnt pay for me to go there. Thinking we are going to see that alot with health care!  Thanks again!

Posted 8/6/2010 11:10 PM (GMT 0)
It's nasty. They flavored mine with lemon flavoring. Still tasted bad. :P

I have to go to the biggest town near me for most of my testings. It's a 40 minute drive. The closest hospital to me (8 miles) is in the process of closing down, merging with another, and moving to a town 30 minutes from me. It's a very limited hospital, 40 beds, and a five room ER.
Posted 8/7/2010 1:59 PM (GMT 0)
Hi Ladybell,
I had a similar story...all my docs thought my problems were be exacerbated by reflux, but the GI docs said the reflux wasn't bad enough for surgery, and "wasn't the cause of my asthma problems". My first PH measure was "4", and I was sent away saying I shouldn't worry or consider surgery.

Fast forward through four years of increasingly severe asthma, high doses of inhaled and oral steroids, physical damage done by those meds, 40mg Protonix 2X a day with 300mg Zantac at night. My asthma wasn't responding to anything, and my family doc sent me right to a surgeon, bypassing the useless GI docs. He tested me with another endoscopy and barium swallow, then with the input of my respected family doc, said I was a good candidate for surgery and should make an appointment.

I went back to my GI with that information, and had another PH monitor which measured 14--another low number to be considered for surgery. This time, however, the GI doc admitted that it probably wouldn't take much acid or bile to get my lungs going. He told me i could continue treating it with meds or see the surgeon.

I opted for the surgeon and after talking with him (he also said that 14 is a questionable number for surgery, but would defer to the opinion of my docs). I scheduled the surgery and am glad I did.

I only wish I'd done it before I had so many problems due to the steroids. For more details, check out the post I wrote for Joe about his LPR issues.

Good luck, and keep searching for answers.
Take care,
Denise
Posted 8/8/2010 1:16 AM (GMT 0)
 Thanks Denise for you replying.  Mine does sound similiar to what you went through, except I had the asthma for a short time. The surgeon that did my testing said that if it had been 14 it would be abnormal and I would be a candidate for surgery. I was off the PPI's for 6 days before the testing, seems to me I would need to be off them longer to be tested for it to really measure the acid. But, Im no doctor... tongue   I have been on the PPI's since 2006, have doubled up on them the last year.

    I forgot to mention in my first post that I have ( this is kinda hard to explain) like a  warm sensation coming from my mouth when I breath, (a mouth breather here.)

   Did you have the burning sensation in your throat too Denise?

Thanks again! Denise

 Take care!  Karen

Posted 9/18/2010 10:47 AM (GMT 0)
   I went back to my Primary Care Doctor and he put me on Kapidex 60 mg. It has helped with the burning in throat, but still have some burning. We have a new gastroenterologist here in town, so about a week ago I went for a appointment.  First, he said  I wasn't off the meds long enough for the 24 hr probe. Instead of 5 days it should have been 10.  I will be having another EGD with 48 hr, Bravo test next Tuesday.  I am a little nervous about it from reading some of the posts on here. It's been a year now since all this started.  Will post when I get results. Karen
Posted 9/18/2010 12:38 PM (GMT 0)
Hi Karen,
I also had many times when a reactive stomach and "small amount" of reflux caused me lots and lots of trouble. I had times when my lower esophagus was so burned that I couldn't eat...it felt like a lump, and my stomach could only tolerate a tablespoon of food at a time...sometimes not even that. It took months for that to heal and get back to normal.

Don't be nervous about any of the tests that have a chance of moving you towards recovery. They will be uncomfortable, but you'll manage just fine.

I have a new asthma/allergy doctor because we've moved to a new area. He isn't a fan of GI docs and their testing in regards to reflux and its effect on the lungs. In his experience, a small amount of reflux can do a lot of damage.

Keep in mind that many who are referred to surgery have numbers like 46 and 67 on their Ph monitor tests. If you had any damage at all to your esophagus, even a little, it's an indication of reflux. A score of 4 isn't telling you that you don't have reflux...just that it isn't a large amount/often enough for them to be overly concerned. The other issue is the reliability of the Ph monitor...I'm sure you, like me, was surprised at the low level, considering the pain you experienced off PPI's while you were being monitored.

The thing is this...
The Nissen fundoplication surgery is nothing to go into lightly. I believe that's why they're so careful with referring and doing the surgery. While it has been around for over 50 years (the laproscopic version for just over 10 years), it is a tricky surgery and it takes a highly experienced and skilled surgeon to get it right. Many people get the surgery and go on with their lives without a hitch. Others, though can have new difficulties brought on by the surgery. Therefore, the risk/benefit ratio is very important to consider, and they don't want to operate on marginal people like us, lest they do the surgery for (what they find out later) nothing...that the reflux wasn't the real cause of the problem.

That said, for people like us, often the surgery can be the only option. People with high levels of reflux are a no-brainer. They'll do the surgery to keep the food and acid from refluxing, and they know the patient will experience relief. People with more non-traditional, less specific and obvious symptoms are a tougher call, so we have to be more persistent. Surgeons are worried that they'll do the surgery, make the changes in the upper GI, and the symptoms the patient is trying address are still there afterward. I was told by my surgery that, "If your asthma is being caused by the reflux, it will improve after the surgery". No guarantees, because it could be caused by something else. I'd tried everything else, so I did opt for the surgery. At that point I had to at least rule out reflux (which my doctors were sure were causing my problems)...if the surgery worked, great, if it didn't at least I'd have more information. The surgery worked. (Although my incessant coughing during recovery (lung infection that hadn't resolved) most likely caused some damage that is creating problems for me now. Even so, I am very happy I had the surgery. Things are far better than they were.

My low level of reflux was doing number on my lungs, and if my GI doc was more knowledgeable about lung tissue, he would have known that it doesn't take much. Finally after years of struggle, he admitted that it wouldn't take more than one or two reflux episodes to get my lungs going.

Good luck with your testing. Hopefully it will give you some useful information.
We'll be waiting to hear how things went!
Take care,
Denise
Posted 9/18/2010 2:30 PM (GMT 0)
Karen,

What an awesome response from Denise.  She is very wise and knows this disease well. :-)

I wish you luck next Tuesday as I know a year seems like forever when you are looking for answers.  I hope this next series of tests gives you the answers to your problems.

With kindest personal regards,

Kitt
Posted 9/19/2010 3:31 AM (GMT 0)
Denise,

  Thank you for your response.   After reading it, I feel calmer about these tests. It is wonderful to know that someone knows what you are going through and can share it on here. Hopefully, I will get answers soon and be on the road to recovery.  Thanks so much Denise.

Posted 9/19/2010 3:37 AM (GMT 0)
Thanks Kitt!  Denise did have an awesome response and I'm thankful for her taking the time to repond back to me. Will post as soon as I get some answers. Thanks again!
Posted 9/19/2010 12:55 PM (GMT 0)
You're very welcome, Ladybell. Let us know how the tests go! If you have any other questions or concerns, ask away!
Take care,
Denise
Posted 9/21/2010 10:38 PM (GMT 0)
Today, I had the EGD with Bravo PH. It went really well.  With the EGD, the dr. took some biopsies of stomach, said it looked irritated. ( May be from all the acid reflux medicine I have been on ). Will get results in a few days. The Bravo, I am tolerating it real well.  When I swallow food, it hurts for a sec in that area each time. So I am eating real slow. 

I will get the results from the Bravo in about 2 weeks.

This was a piece of cake compared to the 24 hr probe. Which I did ok with it. Having a tube up your nose was very uncomfortable. Will post more later!

Posted 10/13/2010 1:14 PM (GMT 0)

  I went back for my results from the EGD and Bravo Ph Test.  The biopsies showed I have H Pylori bacteria. The Bravo test came back normal. I am now on 14 day prevpac which consists of 2000 mg of amoxicillin capsules, 1000mg of Biaxin, and 60 mg of prevacid a day.  I have 5 more days of it. Some people said it really made them sick, but I have done real well taking it. This is the third time I have had it since 97. Each time I have had the breath test and it is gone.   Doctor seems to think this bacteria caused all my symptoms, such as burning in the throat etc.  I have no symptoms of burning now. I will go back next month to test to see if its gone. I have alot of questions for him, such as why do I keep getting this nasty bacteria.  Does acid cause this?  What can I do to prevent it? etc.  He did tell me that once you have H pylori you will test positive with blood work.

      I thank God that maybe I am getting back to normal.  The first gastroenterologist said if there is such a thing as normal...bad bedside manner I think. I am well pleased with this gastroenterologist I am seeing now. Sometimes its best to make a change if doctor isn't treating you like you think they should. Will post again after I see doctor next month.

Posted 10/13/2010 7:50 PM (GMT 0)
This sounds a lot like what I am going through. I have all the bravo and ph test and all came back low. Have several EGD and tested for H pylori 4 times in the last year and a half, negative. I do have Barrets which I am currently under going treatment for (at the Mayo in Scottsdale AZ) Doctor is talking about doing a "toupe wrap" taking 40 mg of ppi's and hate the stuff. I do have a hiatal hernia and was told by one of the doctors that is what caused the Barrets. This has been going on for a year 3 months, it is getting very old. Hopefully the surgery will cure it
Posted 10/15/2010 1:29 AM (GMT 0)
drgrcr, 

  Sorry to hear that you have been going through this for a year and half.  I have been going through it for a little over a year. It does get old. 

  I forgot to post in my last post,  that I do have a hiatal hernia. I didnt have one last November when the other gastroenterologist did the EGD. I hope you get  relief, if you do have the surgery.

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