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Hi there,
I know that GERD and GI disturbance are pretty common with Scl, not sure about RA. Am wondering if anyone has advice about reflux so bad my chest feels like it is on fire. My motility is so slow and LES is so weak, there is almost constant acid in my chest.
My esophageal specalist had me on Prevacid but after a month the nausea was so overpowering, I thought I was pregnant again and even took a test. My OB-GYN told me it was the prevacid. GI wants to switch me to something called Zegerid but I am reading really scary reviews about Zegerid on the net. Apparently it can cause intense chest pain and pancreatic problems.
Any other suggestions for heartburn and reflux so bad, it makes it hard to eat and sleep? I'm open to any ideas at all. Medicine, foods, anything.
Thank you so much.
Andrea
Andrea, I'm sorry I don't suffer from acid reflux, so I'm not much help with regards to what to do about it pharmaceutically. What does your ND suggest?
The reason I'm writing, is because I came across this article and thought of you. It's an article by a LLMD on the subject of Lyme-induced bell's palsy of the gut and I think you might find it rather interesting in light of your symptoms of esophageal dismotility.
http://www.lymeinducedautism.com/images/Belle_s_Palsey_of_the_Gut.pdf
In fact, there are probably a lot of SDers here who might relate to the gut issues described.
Peace, Maz
Hi Andrea;
Did you know that lack of stomach acid can cause this because your food is not moving down the digestive tract fast enough.To put it blankly…it is starting to putrify in your stomach.Take digestive enzymes,1 with a snack,2 with a meal and you might just solve the problem.I had the same problem and fixed it in just a few days.GNC makes a great one that does not burn a hole in your wallet.The big blue bottl with a red cap hold over 200 capsules and costs around 30$Andrea,
I'm sorry to hear about your horrible acid problem. When I had bad reflux, I took Protonix for almost a year–reluctantly but, I was able to carefully wean myself off of it in January of this year, and have ZERO reflux issues since. I do believe that reflux can be caused by not having enough stomach acid (specifically HCL) but, I also remember Dr. F begging me to take a PPI at least for a while, to prevent damage to my esophagus from SD. I listened to him, and am glad I did. Make sure that you PREVENT something from happening instead of trying to figure out everything at once, especially in the beginning.
If your reflux is being caused by esophageal dismobility related to SD, please make sure you talk to your doctor about it before making a decision. (and don't feel bad if you have to be on a PPI for a while–it will make eating and sleeping SO much easier)
Maria
Thank you all so much. I'm going to sleep on it (I hope, the burning is so intense I wonder if I will be able to sleep). I'm pretty sure the pharmacy left me a message today to say that my health insurance company did not approve the zegerid because it is so expensive, the same thing happened to me when i needed the prevacid solutab. it took about a week for the doctor's office to get the whole thing worked out with insurance. sigh.
Lynne, i love the idea of the digestive enzymes. i even bought a bunch of wobenzym and neprinol as soon as i got on this wonderful board and read about their benefits. but unfortunately, it turns out that the wobenzym can't be chewed (that is why it is enteric coated) because if you do chew it, it begins to “digest” all the way down your esophagus instead of waiting til it hits the stomach. i noticed it burning when i would chew it so i called the company and they said if i can't swallow pills, i can't take their product. boy was i bummed. so, i gave the bottle to my mother who LOVES it. after five days on the neprinol i developed swelling and redness around my mouth as though i had put pink lipstick all around my lips. my ND told me that it was a side effect from the neprinol, and my GP said that it was a form of allergic reaction. long story short, i am not really a candidate for systemic enzymes right now because none of them can be dissolved or chewed. i've been searching for a liquid systemic enzyme but so far no luck.
thanks so much Maria for your encouragement about the PPI. i keep thinking the worst of it based on my experiences with prevacid but maybe i should consider giving it a shot. i definitely don't want to damage my esophagus any more than it already is. the nausea was really horrific though, i couldn't even drive i was so sick. if i do go back on the PPI it will probably have to be the zegerid.
ah well, time to sleep. Maz thanks so much on the article about Lyme and Bells Palsy of the Gut, I can't wait to read it and I have sooo many questions ready to ask the LLMD in a few weeks time.
take care everybody.
A
I think this explains what is going on with me. I shouldn't have stopped the PPI cold turkey, and now that I have, it's getting me back with a vengeance. Maria you were smart to wean off slowly!
GASTROENTEROLOGIC DISORDERS C. Wayne Weart, Section Advisor
Rebound acid hypersecretion a concern after withdrawal of PPI therapy
Key point: A study in healthy volunteers demonstrated that after 8 weeks of therapy with a proton pump inhibitor (PPI), withdrawal resulted in significantly higher acid-related symptoms in weeks 9 to 12 compared with participants given placebo for 12 weeks.Finer points: Christina Reimer and colleagues conducted a randomized, double-blind, placebo-controlled trial in 120 healthy volunteers to determine if withdrawal of PPI therapy would result in rebound acid hypersecretion. A total of 118 participants completed the trial; 60 participants were randomized to 8 weeks of esomeprazole (Nexium?AstraZeneca) 40 mg once daily followed by 4 weeks of placebo tablets, and 60 participants were given 12 weeks of placebo. All participants completed the Gastrointestinal Symptom Rating Scale (GSRS) weekly from baseline to week 12. The GSRS evaluated such symptoms as reflux, abdominal pain, indigestion, diarrhea, and constipation on a 7-point scale, with 7 representing the most bothersome symptoms. The investigators defined clinically relevant acid-related symptoms as a score of 2 or higher on one of the questions related to heartburn, acid regurgitation, or dyspepsia on the GSRS.
GSRS scores were statistically similar between the two groups at baseline, week 8, and week 9. Significantly higher GSRS scores for acid-related symptoms were noted in the PPI group at weeks 10 (P = 0.023), 11 (P = 0.009), and 12 (P = 0.001). In addition, significantly more patients in the PPI group (n = 26/59, 44%) reported one or more relevant acid-related symptom during weeks 9 to 12 compared with the placebo group (n = 9/59, 15%, P < 0.001). The investigators concluded that their findings support the hypothesis that rebound acid hypersecretion occurs after PPI therapy is withdrawn.
What you need to know: PPI use has increased substantially in recent years, and many patients take PPIs for extended periods of time. The conclusion that rebound acid hypersecretion results in acid-related symptoms once PPI therapy is withdrawn may help explain why so many patients are on PPIs long term?this is known as PPI dependency. The researchers speculated that a long-term elevated gastric pH caused by PPIs stimulates compensatory gastrin release, which results in a hypersecretory state that is set off once the PPI is stopped. In an accompanying editorial, Kenneth McColl, MD, and Derek Gillen, MD, noted that the current findings “challenge current liberal PPI prescribing habits”; because PPIs may be creating the disease these drugs are designed to treat, patients often require intermittent or even long-term therapy. McColl and Gillen suggest that PPIs be restricted to patients who clearly need them, such as those with endoscopic evidence of erosive esophagitis. They recommend that short-term courses (1 to 2 weeks) be given to patients in cases where PPIs serve as diagnostic tools for acid-related symptoms; they also recommend trying to identify lifestyle factors contributing to acid-related symptoms, using milder medications such as antacids, and informing patients about the potential for rebound acid hypersecretion to occur. All of the investigators agree that additional studies are needed to evaluate the impact of PPI withdrawal on rebound acid hypersecretion.
What your patients need to know: Educate patients that preliminary data suggest that stopping a PPI can aggravate their symptoms and possibly result in new acid-related symptoms.
- [/*:31plkn9i]Sources
- Reimer C. et al. Proton-pump inhibitor therapy induces acid-related symptoms in healthy volunteers after withdrawal of therapy. Gastroenterology. 2009;137:80?7. [/*:31plkn9i]
- McColl KE et al. Evidence that proton-pump inhibitor therapy induces the symptoms it is used to treat. Gastroenterology. 2009; 137:20?2. [/*:31plkn9i]
Related resource on http://www.pharmacist.com - ADIL, August 2008: New data on risk of hip fracture with proton pump inhibitors.
[/*]
Carli Richard (crichard@aphanet.org)
Posted 11:00 am EDT, July 31, 2009Hi Andrea,
I have suffered from Acid reflux forever. My Doc has me on Omeprazole and Gaviscon. They both seem to work very well. I know it sounds strange but drinking a large glass of milk also really helps me to.
Also my daughter seems to get acid reflux and I didn't want her to be medicated. I put her on probiotics and it has worked for her!
Of course you will have to check if these are compatable with your current meds.
Hope this helps!
Caroline.
Ahhh…the rebound acid–yes, I remember a very wise ND told me to make sure I didn't abruptly stop the ppi because the rebound reflux would be worse than my original reflux. I took 8 weeks weaning myself off, and had very minor reflux, that completely stopped. I was so bummed in the beginning because I thought I'd never be able to eat spicey foods again. Happy to report that I have zero issues with food. I also have to point out though, that I gave up drinking coffee around the same time, which has helped tremendously. I can have it occassionally but, it seems to irritate my throat, which tells me it's too acidic for my body–at least until my gut is healed.
I didn't experience nausea with my ppi at all. Actually got the protonix idea from my best friend, who was pregnant with twins at the time, and was having horrendous reflux. Her ob/gyn put her on it the last 10 weeks of her pregnancy so she could function. Her reflux was so bad that she was nauseous and throwing up daily from it. I figured if it could help her, it could help me.
I am not a fan of proton pump inhibitor (PPI) drugs. I am not going to get into why, though– no time for that. I use famotidine (Pepcid AC). I take 10 mg first thing in the morning on an empty stomach. Actually, I no longer take it every day, but I did take it every day for over a year. You might need a stronger dose, such as 20 mg (or more), and you might need to take it twice a day instead of just once. Also, I just looked it into it and it's available as a solution and as chewable tablets in addition to the usual tablets and capsules.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Andrea,
I just thought of something else. Do you drink coffee?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinGosh Andrea, I'm so sorry that you are dealing with this, too. It's been one of my major issues for the last few years. At it's worst, I couldn't lean down to get things out of the dishwasher or dryer without everything coming back up. Gross and very painful. It was so bad that it had my asthma became really riled up for awhile and the chest pain was awful, as I know you understand. 🙁 Plus, I was told that the longer it went on, the less my stomach valve would be able to function, so it's no joke. Here's what I do:
1. Prilosec – name brand for me is better than generic and Zantac didn't work at all for me. I “only” take 20 mg. of Prilosec morning and evening now, although at one point they had me up to 40 mg. AM & PM! Yikes. One 40 mg in the AM (as my insurance seems to want me to do) just wears off by evening, so that doesn't work for me. I find that it's best to take the Prilosec between 20-60 min. before eating. I'd prefer not to have to take this, but any time I try to wean off of it, it gets nasty fast. So for now, my risk of esophageal cancer and all is more scary to me than the risk from the med. But that's just my choice though, you may feel differently. I get the name brand Prilosec at Costco for the best price. My insurance only wants to cover the generic. Grrr…
2. Diet – I eat absolutely zero garlic, pepper, citrus, chocolate, etc. It's not easy for me, b/c I love citrus, but anything spicy, acidic or high fat is guaranteed to give me big trouble. I've never been a coffee or tea drinker but I'm sure that would be a big no-no for me, too. Also, it's important for me to not get too full at any meal.
3. Adjustable bed – this is one of the best inventions ever, in my opinion. LOL! The difference in comfort for me is amazing. An alternative is the foam wedges available at medical supply stores (they have them in various wedge heights) or a recliner. Also, there is also something really clever available now at a major retail chain for ~ $120-$200 (don't know if I should mention it here?), so if you're interested, please PM me and I'll be happy to PM the info. back to you. I need to get one for when I travel. Anyway, the dr. was adamant that I had to sleep at a 45 degree (or better) angle b/c of the risk of the damage & cancer, but w/o the comfort of this bed I don't know if I'd have really done that b/c I was already having so much trouble sleeping b/c of the SD pain. Between the bed and the Prilosec, my pulmonary function test improved a lot from one year to the next. The respiratory tech & dr. both attributed that to keeping the stomach gases from irritating my lungs. I can't help but think that this might have helped me to avoid PF and PH for the almost 3 yrs before starting AP. I don't know that it had an impact, but I do wonder.
4. Probiotics and Minocin – are helping keep my peristalsis moving now and that helps keep things from backing up (sorry, ugh) and making the reflux worse. I know that you aren't on abx yet, but for now a good, powerful probiotic might help some, even without the abx. Oh & yes, the Mino and my reflux have been a bit dicey to balance, since abx can be pretty hard on the stomach. But with the dr's help coming up with a good abx vs. food schedule, and a wonderful MA going to bat for me with my insurance co. to get pelletized name brand Mino authorized, I am managing quite well now. You may have some tough times at first if abx are prescribed by the LLMD, but I just wanted to let you know that with tweaking, it's working out for me.
5. Exercise – this was really hard when my body pain was the worst, but if you walk for a little bit after eating, it may help your digestion move along better. Plus, of course, you'll be staying upright which is also really important for reflux. It helped me some anyway.
I know that this is long, but it's been a big struggle for me also, so I really sympathize with you. Of course, this is just what has worked for me and I'm just another patient. 😉 🙂 So maybe your dr will have some ideas for you? In any case though, I hope that you find something that gives you relief, and again, feel free to PM me if I can help in any way.
Melinda
Andrea,
Look into this website for the GAPS diet. It is a modified version of the Specific Cabohydrate diet which is used to heal the digestive tract.
My husband had GERD and was on PPI's, then weaned himself off of them because he didn't want to take them forever. He still had issues with it…caused major irritation in his throat. He, like Phil, took pepcid every night which helped a bit, but it still bothered him. Eventually he began drinking a glass of water with 2 tablespoons of apple cider vinegar (Bragg's brand with the mother) and a healthy dollop of honey every night. He loved the drink & it made his reflux much better. We think he had an issue with too little acid. Just a thought. It's easy & tasty too.
This board is the most amazing place. Thank you so much for sharing stories of what has worked for you or your loved ones. I feel like I have so many more avenues to pursue now and so many options, it gives me a lot of confidence that one of them is going to work! Which helps so much, because then even when I am feeling the burning pain I am at least not feeling worry and stress.
Phil, thanks for letting me know about the Pepcid. I will check into that. (Oh, and no I am not a coffee drinker.) And Melinda I am excited to hear about the pelletized Minocin. Does that mean it doesn't have to be swallowed, but that it can be opened and drunk in liquid? That would be amazing.
I am already headed down the probiotic track – that is my first attempt and I have some good ones coming in the mail. We'll see if that helps. I could have gotten them more quickly at the local health food store but they were almost have as cheap on the internet so I took a chance. Mj47 I have heard of the apple cider vinegar cure and contemplated doing it but I was confused because I was told to stay away from vinegar with reflux. Is apple cider vinegar different than regular white vinegar?
Parisa I will definitely check into the GAPS diet, thank you!
Melinda I am going to PM you about the adjustable bed, I've been having trouble sleeping at the right angle. I go to sleep propped up but inevitably when I wake in the morning I have slid down and am flat on my back. Not good.
Thank you all so very much. It is true that I am anxious about the combination of my reflux and the Lyme abx but that is something I will discuss with the LLMD. Just about one more week now.
Take care and I am sending my warmest thanks and prayers for your continued healing.
[user=2523]hopefulmama[/user] wrote:
It is true that I am anxious about the combination of my reflux and the Lyme abx but that is something I will discuss with the LLMD. Just about one more week now.
Hi Andrea,
Were you able to read the Bell's Palsy of the Gut article above? Try not to be too anxious about the Lyme abx protocols. If you do indeed have Lyme, you may well find that your lack of esophageal motility and reflux improves very well with the right treatment and LLMD! I'm putting it out there for you!
Peace, Maz
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