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Old 07-27-2005, 08:11 PM   #1
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Has anyone actually gotten better?

I'm new to this board, and I apologize if I haven't dug deep enough into past threads. But I've read quite a bit here. From what I'm gleaning, most people have had different results of success -- more or less with various meds, or even surgery -- but I haven't seen anyone say, "I took meds, I got better" ?

So my first question -- is, has anyone here who had bad reflux, took meds and eventually got better and went off meds with no return of symptoms?

For those who have insights to share -- he's my journey so far -- and I'm grateful to anyone who has anything to add or offer:

I've had issues with food for 20+ years. Binging, late night eating. Weight gain. Several times I lost weight with dietary changes and exercise, but eventually gained it back. I never had any obvious reflux that I knew of or took even an over-the-counter med.

Last summer, 04, after watching the movie Super Size Me, I decided it was time to make changes. Between May 04 and Oct 04 I lost about 60pounds. I ate less overall, and much much healthier shopping almost exculsively at Farmer's Market. By spring '05 however, some backsliding occured. I had been traveling some, and enjoying a cocktail or vino, the occasional cigar, and some of the late night food self-medicating returned. In April and May, a lot of life-stress -- severe -- as it crippled with sick feeling inside. By early June I had sort of worked through some of that, and then had a bad three-night-sequence. Pushed the limits. And bam. I had some kind of attack in my upper stomach the likes I had never known. Off to the ER, not heart-attack and no discussion of anything else. Sent me home. 3 nights in a row I was awoken with the attack at 4am (classic ulcer). On the 5th day, sever reflux hit me, the likes of which I had never experienced. Pinching in my chest area, etc... I went on Protonix (pantoprazole) 20mg once daily for a few days. It did help at first, but then seemling not so much. I never take meds. So I stopped. I was exercising again, and being more careful (so I thought) about what I was eating, and had 3 more or less ok days. No pain, no attacks and maybe just a slight sense of minor reflux, but long stretches of the day not thinking about it. Then Bam. It was back again.

Since this is alreayd quite long, I'll sort of speed up. Negative for ulcer and pylori. Negative for hiatal hernia. Consulted with GP, health consultant who is anit-big-pharm and an herbalist. I'm in my mid 40's. Tried to do natural things and went on and off the PPI a few times having never been on them longer than 5 days. Eventually new discomforts added to the general backup of acid and pinching in the chest, wierd feelings in the pipe and even toward my throat, though I never felt acid directly go up that high. Then even slight urge to cough.

I read up on PPI as best I could. I saw one study in which it said 92% of people after 8 weeks were healed (whatever that meant) on Protonix but only 60% on Omeprazole. And 40% with no treatment. Another study said only 12% with no treatment. Some stuff I read said that with Omeprazole you could stay on it for years, not so with Protonix?

I have eliminated every possible protagonist from my diet without totally starving. No alcohol, no caffeine, no carbonation, no dairy, little starch, and rarely uncooked foods. Only small amounts of sugary fruits. I never stuff myself and don't eat before bed.

I do not feel however that I'm improving or healing. I have now been back on the Protonix for 9 days, 40mg on empty stomach in the morning. It has kept things from being unbearable but the stress has ramped up and I seem more uncomfortable. I get reflux every time I eat no matter what it is and how little it is, same with vitamins and supplements.

I have also been taking Marshmallow Root extract-tea that I prepare 2-3 cups a day. This is supposed to coat the linings and help allow for cell regeneration. I take extra magnesium and some calcium at night. I also take tri-methyl-glysine as a supplement after lunch to increase methylation. I experimented with DGL Licorice lozenge a natural H2 blocker.

I had no idea how big this problem was, and how many people suffered. I also have never had anything that lasted this long and if I 'stepped up to attention', didn't quickly recover.

From what I've been reading on this board in older threads, when the LES goes, that's it? It rarely comes back? Someone suggested that it needs certain acids to stimulate nerves? I'm terrified of what the downsides to reducing the normal acids are? I never went as far as others here to have them measure the hc output of my body, so I don't know if I'm over, under, normal or what? I did do the Upper GI and that's how the reflux was confirmed although I didn't need a test to know that. They didn't see any obvious ulcer but some inflammation and stridations on lining of Duodenum.

I've also read mixed reports about any benefits from increasing dosage of PPI past a certain point? My doc suggested going to 40mg twice a day, but he's a GP not a gastro-guy, and I'm just unclear as to what this will do, or what risks there are?

Obviously, at some point, I'll have to go to a Gastro person and do more elaborate tests if it gets worse or doesn't heal. I've been totally consumed with this thing, it's stalled my life. I'm trying to do whatever I can to get better, but if the LES is not-functioning right -- and the PPI isn't really a treatment for that, but just to keep the acids down so you don't shred your esophageal lining -- what's the future hold? Meds forever? Juggling meds?

My health consultant wnated me to attack it all with diet, supplements and she said Zantac not a PPI but an H2 blocker was acceptable. She wasn't happy about PPI, which is why I kept trying to go off them. See if the body would just get back to normal, but the acid was just coming up and tearing me up. I couldn't take it after 5 days.

I've also been told it's really bad to just stop. That you need to slowly downgrade. Does anyone here know the science of PPI, and what damage it can do, why it would matter if you just 'stop', or anything about any hard research and studies? I also read about surgery, and it didn't list any of the real-world results that people have listed here? How long does one go with a problem before Barret's kicks in?

Obviously, stress and the vagal nerve are connected. But where does the LES come in? Anyone have LES details? How to get it to function properly again? As I'm sure that is the main reason for reflux.

Has anyone done a Heiddeger test where they look for "under" production of acid which supposedly can cause similar symptoms. Maybe LES breaks down due to not enough acid and other digestive enzymes and PPI is exactly the wrong way to go? This is why I went off them a few times, thinking if I could just get things to calm down maybe LES would function again.

I'm at my wits end, and compared to many here, I'm just a newbie with only 7weeks of a problem, not years, but is this the prelude to the rest of my life? I'm distraught, overwhelmed with info and after spending quite some time reading this board and about others' issues -- I'm even more despondent.

I have lousy insurance and the ER and all the med visits, tests and meds and supplements have set me back a fortune. This doesn't help me get to a "happy place"...

So -- sorry to be so long -- and I appreciate the indulgence of anyone who made it to the end here. And please, any info, insights, answers to questions or personal experience or soemthing a GI specialist told you that might be important or something I need to test, or ask my doc -- I'm grateful for anything.


WTBH

 
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Old 07-27-2005, 08:49 PM   #2
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Re: Has anyone actually gotten better?

Quote:
but if the LES is not-functioning right -- and the PPI isn't really a treatment for that, but just to keep the acids down so you don't shred your esophageal lining -- what's the future hold? Meds forever? Juggling meds?
Your questions are similar to mine...your length of suffering is about the same, too. I woke up one morning (June 1st) with a torn up esophagus, raw throat, tonsils and tongue, pains behind my chest wall and it was all new to me. I had done nothing out of the ordinary the day or night before. Like you, I'm on a quest to hopefully learn that this will eventually GO AWAY! I want to know that this is not something I'm going to have to live with the rest of my life. And, like you, I don't like taking medications for very long (and normally, not at ALL). I have read that the medications reduce or block the acid in the stomach but that the reflux still takes place. I don't believe that Mother Nature could possibly be happy to have the human body's digestive system altered (with meds) without dishing out some consequences. I've taken H2-blockers but had most success with the PPI (Prilosec OTC). Rather than go back on the Prilosec, I'm using Pepcid Complete (an H2blocker) twice daily as long as I get some relief from it's use. I'd rather stay away from the PPI's if possible. And one day (soon, I hope!)...I want to be completely OFF of them.

I'm scheduled to see my GI doctor for a follow up this coming Tuesday in regard to some tests I had done (colonoscopy & endoscopy). I intend to ask him a whole host of questions. Meantime, he did tell my husband that stress is a contributing factor to the onset of acid reflux (GERD and/or LPR). Makes sense as this has been a very stressful year for me. The only diet change the GI doc told my husband to pass on to me (I was 'out' at the time) was not to drink coffee. Other than diet changes and medications, I've read that elevating the head of the bed 6" to 8" will help eliminate acid from refluxing up into the throat area during sleep as it keeps the throat higher than the stomach. I tried stacking pillows instead and woke up with a horrible kink in my neck!

These health boards are helpful but it would be even more ideal if people would continue to post as they are being treated and also to the satisfaction of some sort of recovery. I sometimes think they've found relief and then walk away from the health board because the 'services' here are no longer needed. So, if that be the case.....the news is good, right?

From things I've read here (people having to have the surgery), my condition is not nearly as severe as others. But it is painful, it's real and it does consume my daily life as I cannot eat or drink the things I enjoy without paying the price while I try to sleep.

I'll post more here in this thread when I've talked with my doctor on Tuesday and gleaned more information. Hope this has been somewhat helpful to you.

~Mare

Last edited by tizimare; 07-27-2005 at 08:53 PM.

 
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Old 07-27-2005, 09:05 PM   #3
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Re: Has anyone actually gotten better?

Quote:
Originally Posted by tizimare
Your questions are similar to mine...your length of suffering is about the same, too. I woke up one morning (June 1st) with a torn up esophagus, raw throat, tonsils and tongue, pains behind my chest wall and it was all new to me. I had done nothing out of the ordinary the day or night before. Like you, I'm on a quest to hopefully learn that this will eventually GO AWAY! I want to know that this is not something I'm going to have to live with the rest of my life. And, like you, I don't like taking medications for very long (and normally, not at ALL). I have read that the medications reduce or block the acid in the stomach but that the reflux still takes place. I don't believe that Mother Nature could possibly be happy to have the human body's digestive system altered (with meds) without dishing out some consequences. I've taken H2-blockers but had most success with the PPI (Prilosec OTC). Rather than go back on the Prilosec, I'm using Pepcid Complete (an H2blocker) as long as I get some relief from it's use. I'd rather stay away from the PPI's if possible. And one day (soon, I hope!)...I want to be completely OFF of them.

I'm scheduled to see my GI doctor for a follow up this coming Tuesday in regard to some tests I had done (colonoscopy & endoscopy). I intend to ask him a whole host of questions. Meantime, he did tell my husband that stress is a contributing factor to the onset of acid reflux (GERD and/or LPR). Makes sense as this has been a very stressful year for me. The only diet change the GI doc told my husband to pass on to me (I was 'out' at the time) was not to drink coffee. Other than diet changes and medications, I've read that elevating the head of the bed 6" to 8" will help eliminate acid from refluxing up into the throat area during sleep as it keeps the throat higher than the stomach. I tried stacking pillows instead and woke up with a horrible kink in my neck!

These health boards are helpful but it would be even more ideal if people would continue to post as they are being treated and also to the satisfaction of some sort of recovery. I sometimes think they've found relief and then walk away from the health board because the 'services' here are no longer needed. So, if that be the case.....the news is good, right?

From things I've read here (people having to have the surgery), my condition is not nearly as severe as others. But it is painful, it's real and it does consume my daily life as I cannot eat or drink the things I enjoy without paying the price while I try to sleep.

I'll post more here in this thread when I've talked with my doctor on Tuesday and gleaned more information. Hope this has been somewhat helpful to you.

~Mare
Thanks for the thoughtful reply... I haven't tried H2 blockers although I had some promise at first with the Licorice Root Lozenges, they would work very quickly to neutralize acid, but then it seemed 30-40minutes later it was back with a vengeance.

I guess is stress is the root or a major root, it will never get better without fixing that and unfortunately, I see my stress staying high not going down. I even took a meditation lesson last week and sat in a Buddhist shrine. Trying to still the mind, or quiet the mind, but I had no success. I imagine I need more training and LOTS more practice. I guess I'll try anything and everything if I have to...

I looked at the site for this guy who has the new book, with a different analysis, but I'm not eating any carbs now, or starch I should say. Or very very little. After going off the PPI 2-3 times, mostly on my own fears (I agree, something doesn't seem right about removing what the stomach normally does) but I'm scared to go off them again, since 1) some people claim a sudden stoppage brings a vicious backlash, 2) I'm sure I'm still not healed up in the linings and more stress will just set me back 3) most of the protocols I have read talk of minimum 4 weeks, and possibly 8 or more... so I don't want to reset the clock. I'm kind of sorry I didn't start right away, as I'd be at 6 1/2 weeks now, and perhaps it got worse for a bit there when I was goofing around on my own?

I could flip over to Zantac which I was told by the non-doc health professional (recommended by another Doc who she values) as the one more or less safe drug, something to do with methylation, which I'm still fuzzy on.

Doctors seem to speak of upping doses fairly quickly, but the research study I looked at, said there was no perceptible difference in 40mg a day vs. 80mg for the stuff I'm on? Is more better? If there are downsides to the ppi meds, is more worse for the collateral problems that will come with it?

This is a nightmare...

Yes, it would be nice if people who posted and then had a positive outcome came back to let us know. I have not done the Endoscopy, because it's invasive itself, and the Upper GI showed the reflux clearly, and some issues with the duodenum.

I'm most curious about any science around the LES, the nerves that control the LES, and stress and those nerves. I've been reading a heady book called "The End of Stress as We Know It", but I can't get anything practical out of it, I just know that there are complex things going with the brain and body with stress and I'm sure it's a factor for me.

Anyway -- I guess I could try to move from ppi to Zantac (Rantidine) if I was in the same spot I am now, with some control of discomfort, but not full control -- maybe it would be safer way to proceed, but I'm just so scared to go off the ppi again having started and stopped so manytimes already. I feel like I need to stick to a protocol and run it's course, and then if I'm no better, or worse, go to someting else.

thnx.

WTBH

 
Old 07-27-2005, 09:28 PM   #4
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Re: Has anyone actually gotten better?

Just a note: PPI's take time to kick in (days!). I took Prilosec OTC for a period of 14 days, got relief within the first 3 days.... and when I had to stop taking it, I encountered no problem whatsoever. By the 2nd day of being without any medication, I was back to experiencing the pain of the acid reflux only because I was on NO medication. I would think that for the short period of time that you've taken a PPI, you can go off of it with no problem. I would also think that if you decide that they are what you want to take, give it longer than 5 days to actually work. On the other hand, H2blockers work quicker (within minutes). They don't have quite the impact as a PPI....but some people find relief with them. In my case, the PPI worked better than the H2blocker. As stated above, I am now taking twice the dose (one tablet in the morning, one tablet at night) of an H2blocker just to make up for what the PPI was accomplishing. I've read in this forum that there are some who take BOTH...but I guess you gotta do what'cha gotta do. Also, be aware that some H2blockers will work for you and others won't. Zantac (75mg) and I didn't get along so I switched to Pepcid Complete. Zantac gave me headaches....but that doesn't mean that you won't do well on it!

As for stress relief, I'm a big believer in exercise!! And I'm at fault for not following through on mine since May when the weather warmed up. (Too hot to do kickboxing!) Perhaps that was my downfall. Also, you can't expect to feel relieved from stress with only one visit to a gym or one class of meditation. I think you're on the right track here...but keep going! You will find some stress relief for sure and hopefully, this will be the answer to the acid reflux. How 'bout some daily, brisk, 30 minute walks? I'm out the door first thing tomorrow morning.......

As for the science on the LES, I'll do some internet research. I like to know the "why's" and "how come's" of things, too.

~Mare

Last edited by tizimare; 07-27-2005 at 09:32 PM.

 
Old 07-28-2005, 03:57 AM   #5
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Re: Has anyone actually gotten better?

Note to Tizimare and Wanttobehealthy,

It sounds like you are having a particular tough time with the reflux. You will find lots of support and information on the posts and yes I guess when people do feel better they do not post anymore. Strictly speaking the standard time for PPI's to be determined effective or otherwise is 3 months in the UK and 6 months in the US. Only then can a proper assessment be made to see if they are helping to reduce symptoms. As with other diseases (for that's what it is for many of us) there is a protocol and procedure to follow. Having given the PPI's or other meds a chance to work you will either continue on that same dose (double dose per day for LPR) for as long as is necessary and possibly indefinitely or reduce the dose if there is good improvement.

Failure of the meds kick starts another set of investigations which include and Endoscopy which will look for damage to the esophaegal tissue, evidence of a hiatal hernia and the H.Pylori bacterium. For those of us with LPR this is less effective in measuring the reflux damage since we do not get heartburn or damage to the esophaegus but it can as in my case show up a hiatal hernia. At the same time as the Endoscopy you may have a Barium X-ray to look for strictures, diverticulums or again hiatus hernia. The most conclusive test for measuring reflux volumes and frequency is the 24 hr ambulatory PH monitoring and manometry test. This will confirm that significant incidents of reflux are taking place and along with the esophaegal motility tests may point to a poorly functioning LES.

What weakens the LES for certain I am not sure but the hiatus hernia is a factor along with stress, poor diet, and being overweight. The influence of pylori and it's associated ulcers and gastritis is unclear but it could also be a factor. The corrective surgery for the LES and hiatal hernia repair are similar and are often carried out at the same time but there seems more concern expressed in relation to the LES element and it's side effects. After all Hiatal Hernia repair is one of the most common surgical procedures carried out with a very high success rate.

The damage that can result from medium to long term exposure to reflux depends on which type it is and how early it is identified. Severe GERD reflux exposure over time can result in Barratt's but I understand it is fairly rare. More common is esophagitus and strictures. However with LPR or silent reflux a lot of damage though minor may have been done by the time it presents itself. This can include inflammation to vocal cords,tooth enamel decay, cryptic tonsils, oral bacterial imbalance and inflammation of nasal membrane. This damage then presents itself as the typical LPR symptoms : globus, excess mucous, post nasal drip, tonsil stones and chronic tonsillitus, throat clearing, cough, bitter taste and breath, burning mouth and throat, cavities and gingivitus.

If as it appears you are really concerned about your situation and the meds then you should if you can get an endoscopy and 24 hr PH monitoring done.

Hope helps.

 
Old 07-28-2005, 05:11 AM   #6
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Re: Has anyone actually gotten better?

Hi Tizimare,

Read on another post that one of your LPR symptoms is the tongue coating and sores. I too have this and I would be interested to know more about your situation in this particular regard. For me this is the biggest downside of the reflux. I used to get tonsil stones bad which my ENT thought were the result of the reflux creating crypts but I had them removed in March so no more stones. Still get white grainy coating on tongue and what appears to be inflammed tastebuds at the back often with whiteheads on. I know that these papillae are often prominent but I think they get inflammed by the acid and collect food debris and mucous which is then turned essentially to plaque by the bacteria who are having a field day in my acidic environment. I know my mouth is acidic as I took saliva PH levels for 6 weeks and it never went above 6.25. Also I think the coating is related to the mucous be it from inflammed vocal cords or post nasal drip. Once again the bacteria feed on the protein enriched mucous. I get stinging nostrils and blocked nose and I have read that LPR is the main cause of the Post Nasal Drip. This makes sense since PND is associated with tongue coatings and tonsil stones. Does the coating or mucous create any negative taste or breath problems for you and if so how do they present themselves ? This is the most annoying aspect of my LPR as the other symptoms are annoying but do not impinge on my day to day life.

Cheers

Ginger

 
Old 07-28-2005, 05:53 AM   #7
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Re: Has anyone actually gotten better?

To answer "has anyone actually gotten better"....I did...100% in just a few weeks....but stopped taking the PPI Protonix and my symptoms returned. This time around, I notice more of a sore throat than before. To whomever mentioned stinging nostrils...what does the presence of this mean? I get that from time to time as well.

My biggest concern in acquiring more symptoms in addition to the ones I have of cough and general unwellness. I can live with these, but then again, I was much happier when I wasn't. I notice that physical activity causes me to feel much better, but that is most likely endorphins easing the pain.

What worries me most is that no one on this board feels signifigantly better after their surgery. I don't know whether to blame the onset of my LPR on stress and Xanax use, or 30 years of diabetes since childhood. One of the complications of Type 1 diabetes is a weakened LES. Try to tell a doctor this...(don't they read? What am I paying $300 a visit for?) I would really prefer to skip on to the surgery if this is my case...as the LES is not going to repair itself...but after hearing everyone's disappointing surgery stories, figure I will just stay on a PPI as long as my symptoms are tolerable.

 
Old 07-28-2005, 10:54 AM   #8
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Re: Has anyone actually gotten better?

Quote:
Originally Posted by ginger65
Note to Tizimare and Wanttobehealthy,

It sounds like you are having a particular tough time with the reflux. You will find lots of support and information on the posts

If as it appears you are really concerned about your situation and the meds then you should if you can get an endoscopy and 24 hr PH monitoring done.

Hope helps.
Ginger, thanks for thie feedback. In my case, I have had blood work to rule out pylori, and I had the upper GI, which ruled out obvious ulcers and obvious hiatal hernia. It DID show obvious reflux which the radiologist called serious, not severe. My doc was there too and he thought it was severe, but the radiologist said it would have to be up to my throat for severe which it wasn't. They also saw something in the lining of the duodenum which they didn't call "ulcer" but duodenitis which is inflammation I guess.

My doc felt there was no longer a need for anymore tests. And that PPI was the protocol. Which I was willing to accept at that moment.

The PPI is doing something. Because after I had started it, I got scared off with all the info about why it's bad and dangerous to be on PPI or to eliminate HCL in the gut. And I stopped taking it. But it seemed my condition was worsening. The doc described it as a "sunburn on the inside" and that I had to let it heal, and that the PPI was allowing that to happen. That seemed reasonable.

My concerns continue on a couple points:

1) PPI doesn't deal with causes, or do anything to strengthen LES

2) PPI is not making me perfect or allowing me to eat normally, it's just keeping things somewhat tolerable

3) PPI regimens, I can't find one testimonial of someone who was on it for any length of time, and then said afterwards, "I was back to normal"

4) Books like "Why stomach acid is good" are setting off alarms about PPI for me and other problems I may bring on with PPI use or extended use

The concept of internal linings in the esophagous or duodenum needing to heal up makes sense. And the reality of the discomfort I was feeling OFF the ppi -- lead me back on them.

But I continue to have a lot of concerns and fears.

As I indicated, I'm also using supplements and herbs, but don't know if they are effective or as effective with the drugs at the same time?

Besides cost and the unpleasantness, the main reason I haven't done the Endoscopy or 24hr Ph and other test -- is because from what I've gleaned here that even if they made a more precise diagnosis, and confirmed my LES was weak, or non-functional, and or the lining was in bad shape, the protocol would still be PPI for some extended period. Which I am now doing anyway.

I don't know what to make of GI's, GPs and Pharmaceuticals going in one direction, and books out there talking about how they have it wrong, and acid reduction being very dangerous, and then even further my herbalist and other health advisors really emphasizing causes like stress, diet, weight and lifestyle?

I have lost weight. I have made radical diet changes. The stress is another matter, but I am trying to find some ways to address it, and am at least still exercising a few times a week and walking.

So that's my situation. I'm looking for someone to say, "yeah, I took Protonix for 8 weeks and was done, back to normal". Or I took Protonix and lost 35 pounds and eat smaller portions and was back to normal.

Or the opposite, "I've taken PPI meds for a year or more and they only work for a time, and then burn out and I flip to another, and the minute I go off it I'm back to where I started". This would lead me to believe that it's only a partial stop-gap to the extreme discomfort of reflux and not really enabling true healing to occur.

I'm simply not mentally ready for a concept of some medicine being part of my daily life for the rest of my life to manage some condition that they can't really get to the bottom of. I would not do the surgery unless they said I was 90% going to get cancer.

thnx, WTBH

 
Old 07-28-2005, 11:00 AM   #9
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Re: Has anyone actually gotten better?

Quote:
Originally Posted by vintagegirl
To answer "has anyone actually gotten better"....I did...100% in just a few weeks....but stopped taking the PPI Protonix and my symptoms returned. ...as the LES is not going to repair itself...but after hearing everyone's disappointing surgery stories, figure I will just stay on a PPI as long as my symptoms are tolerable.
I thought the idea was that the PPI allowed the body a chance to heal and to let the LES return to normal. But it seems like this is NOT the case. Perhaps the ppi allows the lining to heal a bit and that's why people feel better at some point, but since the reflux is unabated, as soon as they go off the meds, discomforts return as the acid is more prominent and still going up the pipe?

 
Old 07-28-2005, 11:03 AM   #10
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Re: Has anyone actually gotten better?

Quote:
Originally Posted by AaronR
You might give ginger root juice a try, do a yahoo or google search for 'ask dr stoll' you'll find it. Seems to work for some people. Lot cheaper than PPI pills. I believe PPI or H2 blocker just cover up the symptom to provide temporary relief, not addressing the cause. It may help the healing of ulcer or inflammation but not reflux itself.
It is true that raw ginger (juice may have sugars added) may have some healing properties for ulcers. I don't know if it does anything for acid. As I mentioned supposedly DGL Licorice Root is a "natural" H2 blocker.

But your point is well taken. PPI or H2 seem to cover up symptoms for temp relief. Not addressing cause. And this is why I'm in such turmoil, because I don't know how to address cause, and it's so uncomfortable to go off the PPI and I feel I'm risking deeper damage that I feel caught between a rock and a hard place.

 
Old 07-29-2005, 10:48 AM   #11
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Re: Has anyone actually gotten better?

As far as the acid and pain go, Protonix (a PPI) works very well for me. I have been on it for about a year with great results and it took about a week to kick in. I was on Rinitadine before that but it did not last long enough. You need to stay on PPIs because they are the only things that really address the problem of acid production, which is what causes the damage and the pain. Get that nailed down first and then look at the root causes. In my case, I'm still searching after 5 years. I have constant burping and bloating which put pressure on my heart and lungs, cause my blood pressure to go up and my head to feel uncomfortable. Very annoying. Anti-anxiety medication (2 weeks in) does not seem to be working but I'll keep trying. There are also some medications for controlling spasms in the esophageal muscles, which may be part of the problem but I don't know what side effects they have. All of my problems started with being laid off so stress is definaly a likely cause, but I can't even excercise when I'm so bloated (my blood pressure is too high). Some are trying acupuncture, massage, yoga, but haven't seen anything conclusive.

 
Old 07-29-2005, 11:39 AM   #12
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Location: south louisiana
Posts: 8
chele429 HB User
Re: Has anyone actually gotten better?

Quote:
Originally Posted by Wantobehealthy
Or the opposite, "I've taken PPI meds for a year or more and they only work for a time, and then burn out and I flip to another, and the minute I go off it I'm back to where I started". This would lead me to believe that it's only a partial stop-gap to the extreme discomfort of reflux and not really enabling true healing to occur.

I'm simply not mentally ready for a concept of some medicine being part of my daily life for the rest of my life to manage some condition that they can't really get to the bottom of. I would not do the surgery unless they said I was 90% going to get cancer.

thnx, WTBH

Wanttobehealthy-----I think I qualify as one of these people you are looking for, but don't know if you want my answer!

I have been on various meds for reflux since about early 2002. Had the partial fundo in early 2003 due to taking 6-8 Nexiums daily to control the acid. Did great with the surgery and aftewards---for 10 months. November 2003 I was back on NExium, and now I am looking at more testing and surgery. Before surgery, I did the Ph probe while taking meds, then without meds, with diet changes and no meds, with diet changes and meds---a lot of probes in the nose!!! I have had numerous probes in the doctors office looking down the throat, and he was seeing more and more damage. Seen specialist for vocal cord damage. Since the surgery, have done swallowing test to see why I am choking (duh---the fundo is tight!), but also to see why I have the lump-feeling in my throat. The problem now is that the reflux is coming very far up into throat, if not back of mouth area, even with the wrap so tight. SOOO, now I am looking at more throat testing (damage control and motility issues) as well as going to see some gastro specialist about the acid production and explosion going on!

IN all honesty, I have no clue if doing the meds is helping or hurting. But I do know that when I don't do the meds I have more pronounced symptoms and horrible acid taste/smell in my mouth. I hate to get close to others because I offend myself! But I have been told by all specialist and doctors who have looked into these body cavities since the surgery that good thing I have had the surgery b/c there is so much acid now, they could not image what it was like before. Words of comfort.

Hope this helped

Michele

 
Old 07-29-2005, 09:53 PM   #13
Junior Member
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Join Date: Jul 2005
Posts: 23
Wantobehealthy HB User
Re: Has anyone actually gotten better?

Quote:
Originally Posted by burpingguy
As far as the acid and pain go, Protonix (a PPI) works very well for me. I have been on it for about a year with great results and it took about a week to kick in. I was on Rinitadine before that but it did not last long enough. You need to stay on PPIs because they are the only things that really address the problem of acid production, which is what causes the damage and the pain. Get that nailed down first and then look at the root causes. In my case, I'm still searching after 5 years. I have constant burping and bloating which put pressure on my heart and lungs, cause my blood pressure to go up and my head to feel uncomfortable. Very annoying. Anti-anxiety medication (2 weeks in) does not seem to be working but I'll keep trying. There are also some medications for controlling spasms in the esophageal muscles, which may be part of the problem but I don't know what side effects they have. All of my problems started with being laid off so stress is definaly a likely cause, but I can't even excercise when I'm so bloated (my blood pressure is too high). Some are trying acupuncture, massage, yoga, but haven't seen anything conclusive.
Wow, these are not making me feel so optimistic... I'm looking at all or most of the things you site -- yoga, meditation, accupuncture, and was thinking of downgrading from Protonix to Zantac soon. So perhaps I'll stay on the Protonix a bit longer, but a year is too long and unacceptable. I don't want to be stuck on them. And I don't know if they are safe for that long? How do you get off them?

I really think there is a backlask off these meds. When you go off them, the acid overproduces because the body was struggling the whole time to make acid?

Diet is strict in two regards 1) I'm not eating anything I think is provocative 2) I'm trying to eat foods and take supplements that are alkalizing, and or coat the stomach.

8 weeks maybe 12 on meds to get better seems possibly reasonable, a year or more and only to control it -- but not better --
f r e a k s m e o u t

I'm not convinced my body is over secreting or not? Maybe it's just that it's coming up? Has anyone heard of the Heidelberg test? It's to test under-production of acid which they claim also has reflux symptoms?

If the acid is over-producing and the PPI is keeping it down and something is healing -- that makes sense. If it's just keeping the reflux in check, but no healing or making the acid problem worse long term...?

thnx for the input

WTBH

 
Old 07-29-2005, 10:00 PM   #14
Junior Member
(male)
 
Join Date: Jul 2005
Posts: 23
Wantobehealthy HB User
Re: Has anyone actually gotten better?

Quote:
Originally Posted by chele429
Wanttobehealthy-----I think I qualify as one of these people you are looking for, but don't know if you want my answer!

I have been on various meds for reflux since about early 2002. Had the partial fundo in early 2003 due to taking 6-8 Nexiums daily to control the acid. Did great with the surgery and aftewards---for 10 months. November 2003 I was back on NExium, and now I am looking at more testing and surgery. Before surgery, I did the Ph probe while taking meds, then without meds, with diet changes and no meds, with diet changes and meds---a lot of probes in the nose!!! I have had numerous probes in the doctors office looking down the throat, and he was seeing more and more damage. Seen specialist for vocal cord damage. Since the surgery, have done swallowing test to see why I am choking (duh---the fundo is tight!), but also to see why I have the lump-feeling in my throat. The problem now is that the reflux is coming very far up into throat, if not back of mouth area, even with the wrap so tight. SOOO, now I am looking at more throat testing (damage control and motility issues) as well as going to see some gastro specialist about the acid production and explosion going on!

IN all honesty, I have no clue if doing the meds is helping or hurting. But I do know that when I don't do the meds I have more pronounced symptoms and horrible acid taste/smell in my mouth. I hate to get close to others because I offend myself! But I have been told by all specialist and doctors who have looked into these body cavities since the surgery that good thing I have had the surgery b/c there is so much acid now, they could not image what it was like before. Words of comfort.

Hope this helped

Michele
Michele, I really feel for you. Is there any chance that the meds themselves caused a backlash making acid worse? That the more you try to restric it the more it fights back? I'm new to all this, and I'm sure you have good doctors ... Obviously, if the acid is destroying the insides of your esophageal lining or throat, you have to do what you have to do.

My non-doc health advisor is trying to have me eat NOTHING that would cause or add to acid, and to take supplements and natural things that are alkalizing in the gut and that coat linings.

My herbalist has me on Marshmallow Root tea, which also coats and allows for healing. I have no idea if any of this would help you or not?

I take Glutamin before and between meals. Kombucha (non sweetened) has alkalizing properties. I take extra magnesium and calcium at night. I chew on some DGL Licorice lozenges, a natural H2 blocker. I eat only cooked meat and vegetables, almost no starch, no sugary things and no high acid foods like tomatos and peppers. No caffeine, alcohol or carbonation.

Good luck to you and I will be sending positive vibes.

 
Old 07-30-2005, 10:06 AM   #15
Junior Member
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Join Date: Jul 2005
Posts: 12
matthew230 HB User
Re: Has anyone actually gotten better?

I'll think you'll find that alot of people do get better. It's just that they don't feel the need to hang out in health forums afterwards !

I was diagnosed with LPR 3 weeks ago, and have since developed further symptoms related more to GERD also. I am up to 40mg of omeprazole per day, and I think that this gives me some abdominal discomfort about once a day or so. I also seem to get quite a lot of belching.

However, 3 weeks on the PPI's and I suddenly realised yesterday that I hadn't thought about my throat for a few hours, in fact it almost felt normal !! In addition the burning pain in my chest is now more of an ache than a pain. I'm not coughing up huge amounts of phlegm in the morning any more, although coughing is still a problem that makes my ribs ache

I don't feel that I am refluxing at the moment and am on a road to recovery. I have read quite a lot about PPI's and most documentation says 4 - 8 weeks to provide any improvement in symptoms. And when you think back how long you have been on the meds it will probably be a week or two less than you thought.

So, I think that you should keep an open mind on it, keep taking the meds for at least two months. Also if you do feel better one day, don't automatically expect to feel better day on day. Although your reflux may have come on very acutely, it doesn't mean that there was not a long time build up of damage, and that will take a long time to correct.

I know the feeling that you think you'll never feel normal again, but in all probablility that won't be the case !

I'm going to have a GI next week to check for gastritis, Pylori or ulcers etc. but I think that it will probably serve just to put my mind at rest.

One think I thought when I started have abdominal discomfort and feeling lethargic was that there might be something more serious, but no-one on this thread ever mentions the C word. I know that reflux is not associated with any kind of malignancy, therefore I guess that is why.

So chin up, keep the diet good and the meds, no gassy drinks, alcohol, caffiene, fatty foods, eat small and often and you should start to feel better in a few weeks.

 
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