I am CDC+ Lyme, and have nighttime GERD. Every morning I awaken with acid in my throat. I also have disrupted sleep. This has been going on since I started getting sick (past 10 yrs). Once, I woke up in mid of the nite and felt my stomach contract and the contents shoot up my esophagus.
Dr. S. in her paper "Bell's Palsy of the gut" described GERD as part of the GI manifestations of Lyme.
I was on cholestyramine (known to give reflux) for neurotoxins 1 scoop in am, as per modified Dr. S (different Dr. S) protocol, A few weeks ago, on CSM, I awakened with acid in my mouth, not just the back of my throat. Now the mucous membranes of my mouth and teeth feel smooth. I am so worried because GERD can cause pre-mailgnant and malignant changes. Of course, I stopped the CSM, but the reflux in my mouth persists.
I am also taking Nexium 1-2X's per day and a pepcidAC at nite before bed. I'm not thrilled to take these meds because I have osteopenia and they have been linked to fractures.
Other meds are bicillin shots, rifampin, tindamax, DMSA, multiple supplements. The GERD has been many years, and these meds are new and don't seem to exacerbate it
I have followed usual reflux guidelines (not perfect with the food, but pretty good). I have tried many treatments, including DGL, aloe, GI Benefits with glutamine, betaine, and bitters.
I have appointment with GI M.D. in next few weeks and will be getting an endoscopy, with colonoscopy this fall.
Anyone else with this problem? Any ideas would be greatly appreciated.
14k
** moderator's note - doctor's names removed, please see terms of use **
[ 09-01-2010, 08:26 AM: Message edited by: sixgoofykids ]
Posted by Rivendell (Member # 19922) on :
Yes, I have major acid reflux. Had it since the diagnosis of CFS, which I now know is Lyme. I am on the strongest prescription med for this, Kapidex/Dexelent. I was taking Nexium, but just kept getting worse.
I do all the right things, with diet, etc. Was even considering surgery for it, but found out it could cause difficulty with swallowing or vommiting. Don't need that.
I have the same concerns as yours. All I can say is try a stronger med.
Best wishes.
Posted by bcb1200 (Member # 25745) on :
Gerd / Reflux is a Bart symptom, not lyme.
Yes...I have it. I was diagnosed with Gastritis in March before I was diagnosed with Lyme in May.
Suspect Bart.
Posted by 17hens (Member # 23747) on :
My 14 year old daughter has GERD & Barrett's esophagus. She also has Bart, streaks, stretch marks and all.
My daughter takes 40mg of protonix in am and 40 mg again before bed. It is helping at the moment. She was also taking carafate as needed but hasn't had any for about 3 months.
She's also taking digestive enzymes with meals.
I'm hoping the acid resolves with Bart treatment. But what to do in the meantime...
I met a young man over the weekend. He's had GERD for 13 years (since age 15). As we talked, him asking me questions, I saw the lightbulb go off in his head. After years of doctors telling him he was fine, it was all in his head, he's discovered what's been making him sick.
He said he has GERD (the G.I. doc said the worst he's ever seen), fatigue, problems swallowing, very painful calves and soles of feet, and subcautaneous (however you spell that) nodules on legs, and often has fevers of 104.
So at the very least he has Bart.
Posted by heartof14k (Member # 20439) on :
Thanx for your responses. Does anyone know of anyone who had their GERD resolve with antibiotics?
Posted by hurtingramma (Member # 7770) on :
I took medication for GERD for years and years until it no longer helped starting last Dec.
After having tests done "motility testing", which includes a swallow thing where they watch to see if stuff comes back up, and also a 24 hr. test where they leave a tube in, they discovered that I did NOT have GERD, but just another unnamed motility issue.
This just means that my digestive system doesn't work fast enough.
Since that diagnosis, I have been taking Amitiza and have had no more problems.
The testing was a nuisance, but it was nice to learn the truth after all these years.
Posted by bcb1200 (Member # 25745) on :
mine is gone. I have yet to treat bart, but I have treated lyme with doxy, flagyl and biaxin.
I still take 40mg of Nexium.
My goal is to take Levaquin in September for 2 months then ween myself off of nexium, which can be tough.
Posted by Richard1062 (Member # 19233) on :
Yes, GERD since about 15 years ago. Eventually our local homeopath helped a lot, and even got our daughter weaned off prescription meds! (prevacid, prilosec, etc).
Now she manages by controlling her diet carefully. NO DAIRY, no acidic foods on an empty stomach, for example.
She has Lyme and had Ehrlichiosis, no evidence of Bart.
Posted by INEBG (Member # 27690) on :
GERD was one of the first symptoms I had. (dx with Lyme, bartonella, babesia years later) I was perfect with my diet, and that helped. I took a proton pump inhibitor for awhile, but didn't like being on abx. (Those were the days.) I really don't know if the meds I'm taking for babesia/Lyme are helping, but I do not have a problem with GERD anymore. The other thing that helped me is that I was dx with sleep apnea and now use a cpap. I hate wearing the thing, but a wonderful side-effect is that the air pushes down into the esophagus all night, keeping anything that would reflux up where it belongs.
Posted by Carol in PA (Member # 5338) on :
Oh, Carol, I didn't tell you, but my daughter tried the d-limonene for a few months.
She would take it at lunch with other supplements.
Many days she would come home from school and tell me that after lunch, she would have a bit of acid that tasted just like the d-limonene.
We stopped taking the d-limonene about 2 months ago and she stopped complaining of acid after lunch.
When her acid is more under control, or rather, when she stops having acid (she's on so much antiacid meds, she shouldn't have any acid but still does), I will try her on it again.
I do think it could help her to heal, just now is not the time.
Just wanted to let you know.
My mom, on the other hand, had acid and was treated for h-pylori. She tried the D-limonene and loves it! It really helps her at this point.
Posted by Carol in PA (Member # 5338) on :
Darn, the d-limonene is supposed to stop the reflux.
I have used it twice now, and both times the reflux stopped, and I was able to sleep with no problems.
Carol
Posted by 17hens (Member # 23747) on :
Maybe it works well or not depending on what's causing the GERD, bad bugs or abx or something else. I haven't given up on it. Just waiting for the right time.
Posted by sillia (Member # 23994) on :
I had a bad case of GERD a number of years ago, long before I was dx'd with Lyme. So it may or may not have been related to Lyme; at the time I had been taking ibuprofen for sinus headaches (what a dummy) AND I had started drinking some coffee again. So the cause could have been just that, who knows.
Anyway, none of the medications I tried worked, though some helped a little. This dragged on for months. Finally I cured it with ginger juice! It took 3 weeks, but it totally stopped it. And, it hasn't recurred, even while I was taking Doxy. Of course, I never take ibuprofen, avoid caffeine and keep my diet good. If you haven't tried this one yet, I don't suppose it would hurt. instructions for ginger juice treatment Posted by 17hens (Member # 23747) on :
Something else to try - HEY, if anyone with serious GERD tries one of these ideas and it works, PLEASE let us all know!!!!
I found this on Stephen Buhner's (author of Healing Lyme) blog at www.planetthrive.com
Dear Stephen, I have two ill friends who wish to take more herbs but they suffer from horrible GERD and have not found anything useful. Both of them have lost substantial amounts of weight from not being able to eat. What would you recommend for GERD?
Stephen's response: I would recommend that they begin using fresh juice each morning: cabbage is the most important as it contains specific anti-inflammatory and mucosal healing compounds. Cabbage, beet root, celery, carrot.
Then only oatmeal for the first solid meal. I usually do the juice for breakfast, the oatmeal for an early lunch and miso soup for dinner.
It is a diet reduction but it will normally relieve those symptoms within a week or two, permanently if the diet is closely watched and adjusted.
I have used cow parsnip seed (heracleum) for hiatus hernia with good success; they might try that.
Posted by 17hens (Member # 23747) on :
hurtingramma said,
"I did NOT have GERD, but just another unnamed motility issue. This just means that my digestive system doesn't work fast enough."
Do you remember, Hurtingramma, if you had a hiatal hernia or not?
I would love to find out if my daughter's GERD is actually a slow digestive system or not. But I do know she has a hiatal hernia, so I don't know if that lessens the chances.
Posted by imagine2 (Member # 3136) on :
An LLMD told me that the disease process of lyme causes an inflammed sphincter which causes GERD.
17hens, I also have a hiatal hernia and I think it makes GERD worse.