posted
I suddenly developed delayed gastric emptying (gastroparesis) 2 months after starting Bicillin for Lyme. I also have babs, bart, mycoplasma, etc...
This showed up on an old GI endoscopy done in 2002 also but I have not had problems in the interim that were extreme like this.
When I eat anything except soup it feels like lead going through me and I get nauseated. Also wake in the night with nausea and have aspirated in the past (though I did not know what was going on).
Has anyone cured this with Lyme treatment? My LLMD pulled me off Bicillin until we get results from stool tests as I had diarrhea and want to make sure it is not a C. Difficile infection. Waiting on results.
My feeling is that I need to be scoped again (hate twilight sedation!) and have the GI Dr. take biopsies and send them to Igenex to see what bug is responsible for this. If it is Vagal Nerve Neuropathy then it is because of neurolyme and I will need to get more aggressive with treament. Strange it happened when on Bicillin.
Would love to hear from anyone who has Gastroparesis and what has helped. I don't want to end up on a feeding tube as I almost felt recovered a month ago. Very strange.
I have heard that Domperidone works for motility. Also heard that Iberogast tincture (herbs) works very well also. Anyone tried that?
Any input from other sufferers welcome!
Posts: 770 | From USA | Registered: Jul 2006
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I also have gastroparesis. It's incredibly painful for me when it happens. Interestingly, I also have Bart and Mycoplasma along with the Bb.
Mine got a little worse recently when I started on IV Doxy. Hmm.
I have atrophic gastritis (no stomach acid). It was discovered by the way things looked during endoscopy and elevated gastric pH, as well as the presence of anti-parietal cell antibodies.
I'm telling you this because what has helped me more than anything else (and I've tried a lot of stuff!) is Betaine HCl. I buy capsules and take 2 with every meal. I also take pancreatic/digestive enzymes, which are also over-the-counter.
Since taking the HCl, I have not had a major attack of gastroparesis, and have managed to stay out of the hospital!
Different GI docs over the last few years prescribed me various meds, some of which I tried (Pancrease MT, Reglan, Neurontin, etc) and didn't work...and others that I never touched.
It was actually a mainstream GI doc at a major teaching hospital that told me to try the Betaine HCl. He made lots of other horrendous mistakes, but the HCl been a life-saver for me.
The question is whether you make acid. Do you have any autoimmune diseases? (especially thyroid, adrenal, or vitiligo)? If so, the chances of hypochlorhydria are greater...
Are you on anything besides the Bicillin right now? How was your gastroparesis diagnosed? I thought a gastric emptying study was the gold-standard (endoscopy just looks at the inside of the esophagus/stomach).
Posts: 95 | From Maryland | Registered: Sep 2009
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I was thinking of doing an endoscopy or Pill Capsule test. I did not know that gastric emptying was the best test. I believe I had a positive gastroparesis endoscopy in 2002 but the emptying test was normal. Not sure how to proceed ( I hate more tests! I have been poisoned enough!).
I will ask my Naturopath Thursday about Betaine HCI and she will test me for it. I am not aware of any auto immune diseases as all were negative, though I did have a low positive ANA that was speckled.
I am off Bicillin right now until we figure this out. Stool studies are out for all the usual suspects.
Posts: 770 | From USA | Registered: Jul 2006
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I know how you feel about too many tests!! The pill camera test was a waste of $$ for me, but it does help some people...
Let me know if you end up trying the Betaine HCl, and if it helps. Apparently you'll know if you don't need it (it will burn), and it's contraindicated in people with too much acid, ulcers, etc.
Good luck to you! Are you on a Gluten-free diet?
Posts: 95 | From Maryland | Registered: Sep 2009
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My hubby took 1 Hcl betaine and it burned, so he didn't need it.
Me on the other hand took 10 and no burn whatsoever.
What do you think this means?? I've always wondered.
I have no gallbladder and take digestive enzymes and ox bile but still have super delayed transit time.
Any insight???
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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Well, of course I'm no doctor! But it's easy for me to know I need it since I actually don't make acid anymore. I don't have any burning either. The doc that told me to take it said to continue increasing until I felt burning and then cut back by 1 capsule.
I only take 2, but there's no burning and I feel like I digest well with this amount. So I haven't increased. I'm the size of a 12-year-old, so that probably accounts for something too!
My hubby tried it also and had burning, so we know he doesn't need it! One time as an experiment we both tried baking soda in some water, chugged it down to see who would burp (apparently with normal acid, you'll burp b/c of the alkalinity of the baking soda).
Remember that scene from Charlie and the Chocolate Factory when they float up to the ceiling and burp to get back down? Well, my hubby could have made a cameo, haha!
But I on the other hand sat there waiting...and waiting...and waiting...and nothing. So, who knows how accurate that "test" is, but we noticed a difference for sure. Makes sense I guess.
I don't have a gallbladder either and I've had pancreatitis a few times because of other problems. I have lots of autoimmune diseases aside from the atrophic gastritis, so it kind of goes with the territory...but I never forget the enzymes and HCl!!
My transit time improved when I stuck to a strict elimination diet. I have Celiac and allergies to dairy/casein, so those were no-brainers but I also react very badly to yeast (brewer's/baker's yeast). When I eliminated that and sugars, I felt much better too...
Posts: 95 | From Maryland | Registered: Sep 2009
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posted
pas, thanks for sharing. You are very wise to stay diligent with your diet. I'm happy that's helped your transit time.
Casein and gluten are problems for me as well but have a difficult time being strict all the time.
I'll keep taking my HCL and enzymes. BTW what digestive enzymes do you take. I use Super Enzymes with ox bile from NOW brand. I'm not sure if they are doing anything.
Myco, I hope you find something that works for you. I find if I lye on my right side after a meal and massage this often helps to move food along.
Thanks
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I hope that my condition will improve as I treat Lyme and Co's. GI and neuro symptoms were the first to appear and the most severe problems for me still.
I have gastroparesis and functional vagal neuropathy. Diagnosed after a very thorough workup by a GI motility specialist. I had all the traditional tests such as small bowel follow through, gastric emptying scan, upper endoscopy, colonoscopy, HIDA scan, CT scan, and sitz marker test. All were abnormal.
The more specialized testing was manometry of the esophagus, stomach, small intestine, large intestine, and rectum this is how the vagal neuropathy was diagnosed. Basically my nerves and muscles are not communicating. This problem extends from my stomach all the way to the rectum. Not good.
I tried many medications including Domperidone, Reglan, Zelnorm(up to 14per day!), herbs, acupuncture, and 2 different drugs that were in clinical trials. Nothing worked.
Some people find that changing their diet helps. They say to eat more easily digested foods. I tried that too along with the elimination diet. The only thing that I found to truly bother me was beef. I can only tolerate very small amounts of beef. Even then it sits like a brick in my stomach for several hours after ingestion.
I take digestive enzymes, Zofran for nausea, Miralax and lots of Magnesium for constipation (without this I would have one BM per month), and Cytotec to help increase peristalsis with meals. These things are not a fix but they help make the symptoms more tolerable.
Since I started treating Lyme I've noticed that certain antibiotics also help reduce the severity of my GI symptoms and abd pain attacks(these episodes cause me to lose consciousness for several hours). Factive seems to help the most. If I go off of it, I feel worse the next day.
Myco, I hope that you are able to find the cause of your symptoms and a treatment to help. It's not fun having to deal with these symptoms. And it's hard too because not many people are willing to share their experiences with gut issues.
Posts: 5237 | From here | Registered: Nov 2007
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I have been surfing the gastroparesis message boards on the web and alot of patients mention that Iberogast herb tincture from Germany works very well for Delayed emptying. It has been well tested and been around for quite a while. Not too expensive and available at Amazon.
Give it a try if you haven't. I am going to order some myself.
Interesting that Factive helps. I think I have a real problem with Mycoplasma in the gut. When I first got sick my GI tract was the first to get hit. Everything I swallowed felt like glass going through my gut. Intense bloating. I was diagnosed with SIBO and not treated properly. Then delayed emptying on a scope. Then I really became incapacitated with vertigo, MCS, vagal problems (almost passing out with swallowing).
Everything got better for me after low dose Doxy and Zith. I stopped the doxy after 6 months and thought I was cured. Quickly relapsed.
I then treated with Rifampin and ZIth and all neuro sx cleared and have not returned. But now the gut issues came up after 2 months on bicillin. Sudden bloating and alot of gas. My guess is the drug was hitting Lyme and I was getting old symptoms.
I dropped the Bicillin since I was worried about C. Diff. Stool tests were negative however. My symptoms seems to be fading with Salt/C after only a few days. Interesting.
I have RMSF, Myco, Babs, Bart, Cpn, viruses. Feel fairly normal now except for the gut issues and heart arrythmmia due to vagal problems.
I do know there is a new vagal procedure where they put a vagal stimulator under your skin and it stimulates the vagal nerve. Google it. My LLMD suggested it if treatment does not alleviate the problem.
Be well.
Posts: 770 | From USA | Registered: Jul 2006
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After 19 years of GI problems I was diagnosed with Gastroparesis last spring and subsequently with Lyme this winter. Haven't started with any abx yet (still waiting on results regarding co-infections) but have started with some supplements and the every changing diet (no grains, dairy, raw, sugar etc.)
I did discover an Ayurvedic remedy called and am also trying that DIVYA GASHAR CHOORNA -- has anyone else heard of this?
Big thanks!
Posts: 4 | From Canada | Registered: Feb 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Myco - I've researched this to the end as it's become a major problem for me as well.
You should really look into Bartonella.
Bart stops/slows the peristalsis motion of the intestines so nothing moves along as it should.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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