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» LymeNet Flash » Questions and Discussion » Medical Questions » GI Lyme- If you had/have GI sx please respond!

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Author Topic: GI Lyme- If you had/have GI sx please respond!
renny1985
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Please tell me what has worked for your GI symptoms? I have severe GI sx including constant nausea (mild to severe, depending on the minute), abdominal pain (mild to severe), diarrhea and bowel dysfunction. I never ever feel okay in the GI realm.

Everything makes me sick. I have no appetite. It is a chore to eat somedays.

I have yet to find anything that helps with the GI stuff... what has worked for all of you?

PS- has anyone taken xifaxin or know if it kills lyme?

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glm1111
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Antiparasitic herbs were the only thing that worked for me besides salt/c. Parasites/worms cn be a co-infection of Lyme which most docs are unaware of with the exception of Dr. K.

He treats ALL of his patients for parasites. Do a search on here for parasites for more insight.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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LSG Scott
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Tumeric made for a big help to my Gi Symptoms

--------------------
LSG Scott

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karenl
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VSL #3 probiotic and the parasite treatment

Did you test for H-Pylori, it can cause serious bowel problems

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sparkle7
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FYI - Bell's Palsy of the Gut

http://www.thehumansideoflyme.net/viewarticle.php?aid=62

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karenl
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Is a C-diff. test done?
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momindeep
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Gluten-free diet helped my daughter a lot.
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chiquita incognita
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Great comments above, I second every one of them!

Additionally:

Food allergy avoidance, very very important
Chew food thoroughly, render liquid in mouth

Nausea, pain: Chamomile can be anti-inflammatory, may be mixed with peppermint tea and honey if you can take that

Meadowsweet herb is very anti-inflammatory . They used to make aspirin out of it, but mucillage in the herb coats and soothes digestive tract lining so it won't hurt the stomach like aspirin would, in fact it is helpful for ulcers (at Star West Botanicals in CA)

Marshmallow root, licorice root (deglycerinated only) can be very soothing to digestive tract lining

Digestive enzymes, Rainbow LIght has very good ones, one of these formulas includes marshmallow root, google them

Probiotics, a good blend

Aromatic herbs like fennel seed, cilantro, peppermint, coriander break up digestive gas. Recipe book mixing all these herbs and more in foods: The COoking of the Eastern Mediterranean by Paula Wolfertz (not a health book, just recipes, one of my favorites)

Bitter herbs (dandelion root, arugula) stimulate bile flow from the liver CAUTION: May contribute to hyper-acidity, avoid if hyper-acidic

If this was caused as side effect of abx, I would myself tend to use marshmallow root and meadowsweet for mucillage content to soothe digestive tract linings. OR try DGL see how you do.

See your doctor

Check for Candida

This is for adjunct support. It has certainly helped me in the past and also when I worked with the public in healthfood stores and other settings, this worked for a lot of people.

Good book: Digestive Wellness by Elizabeth Lipski, CCN MS

Read more here: www.healthy.net or here www.christopherhobbs.com

BEst wishes, CI

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Razzle
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I have a feeding tube and a PICC line because of GI Lyme... My entire gut is inflammed (seen on multiple endoscopic and colonoscopic tests and also CT scans and MRE tests ~ diagnosed initially incorrectly as Crohn's, now not diagnosed as anything...inflammation is too non-specific) and has dysmotility (officially diagnosed with Dysphagia, Gastroparesis, and Pelvic Dyssynergia, but I know I have small & large intestinal motility issues also), all thought by my Lyme doctor to be caused by Lyme (and also possibly Bartonella, though tests for Bart. & all other co-infections are negative).

So what I find helps me the most is the following:

Homeopathy:
Nux V. helps with general nausea (even if from side-effects of some medications), constipation (sometimes), acid reflux, indigestion.

Ipecac. (homeopathy, NOT the syrup!!!) helps when the nausea becomes more urgent/severe (as in, I'm in the bathroom waiting by the toilet)...

Lycopodium helps with gas pain.

Bryonia helps if I wake up feeling nauseated even before getting out of bed, and the nausea gets worse if I sit up or get out of bed. Bryonia also helps with very dry stool that is difficult to pass.

Herbs:

Burdock Root helps with constipation - acts like a gentle laxative, so I only use it as needed.

Peppermint tea - 1 cup of tea to take my pills before each meal (I have to drink liquids before eating or else the liquids don't go or stay down) seems to help reduce nausea, gas and bowel spasms.

Supplements:

Magnesium oxide tablets - 250mg-500mg with every meal seems to make things move along better in my gut.

Flaxseed meal - ground flaxseed has both mucillagenous properties and also lots of fiber. Fiber helps with motility, and the mucillagenous properties help soothe and heal the lining of the gut.

Calcium d-Glucarate - I take this form because I don't tolerate Ca. Citrate or Ca. Carbonate. I find this helps to cut down on acid stomach sensations for me.

Vitamin B12 (shots, oral/sublingual) - helps with everything. I just plain feel better when I am getting plenty of Vitamin B12. I do not absorb oral/sublingual B12, but use those forms of B12 anyway as a means of combating reactions from sulfites (accidental exposures...). Vitamin B12 binds directly to sulfites, rendering them much easier for the body to eliminate, and also helps the body detox the sulfites more effectively. Also, Vitamin B12 helps to calm down some inflammation in the gut lining, and also helps with nerve-related dysmotility in the gut.

Probiotics. I can't handle high-dose, so I take a children's probiotic and it seems to help reduce indigestion. Too high a dose will cause me to become constipated, and will cause acid reflux (sulfites are generated by probiotic bacteria, and I'm intolerant to sulfites - acid reflux is one of my most common symptoms when I have been exposed to sulfites).

Digestive Enzymes - vegetarian enzymes only for me...I don't handle the animal-derived enzymes at all. Without the vegetarian enzymes, I cannot eat without severe indigestion and nausea. I still have malabsorption and maldigestion, but at least I don't feel as sick with the enzymes on board with every meal.

Other things:

Gentle exercise, when I am able to. I like to take short walks. They help with colonic motility.

Avoidance of foods to which I am known to be allergic (through skin prick/scratch, blood RAST, blood ELISA, elimination/challenge, and also nutrigenomic testing)...this unfortunately includes most all foods in my case because of my intolerance to sulfur/sulfites and gluten, cross-reactivity between most fruits & veggies and tree/grass/weed pollen, etc.

I also find I need to avoid vegetable oils especially if they are cooked, because the veg. oils tend to turn to pure acid in my mouth/stomach and usually become rancid once heated. I cook with butter or canola oil (I tolerate canola oil the best of all the veg. oils; I'm allergic to all nut oils, sesame oil, sunflower oil, safflower oil, soy oil, olive oil, peanut oil, and any oil that is rancid).

Avoid gluten - my stomach slows down and sometimes I get diarrhea if I accidentally eat something that contains gluten (wheat, rye, barley). I also find my hormones severely dysrupted by gluten - they cause menstrual migraines and cramps that do not respond to any treatment. I am even sensitive to airborne gluten, so I try to stay away from bakeries and also must avoid the bread aisle in grocery stores (or else I have to hold my breath if I have to walk down that aisle).

Avoid go to bed within 4-8 hours of eating (depending on how big and what my last meal was). If I go to bed too close to eating, I sometimes wake up vomiting (thanks to the gastroparesis) or with severe acid reflux.

Interferential Current - treatments on my abdomen have really improved colonic motility for me by encouraging normal parastalsis.

Colon Hydrotherapy - this is probably the easiest way for me to detox, and it has helped to tone up and re-train my bowels to have more normal parastalsis. I am not currently getting these treatments but will promptly go back if my colon slows down again.

When I simply cannot eat, I go on a food holiday using a meal replacement formula called Alpha ENF. I do not eat any other food during a food holiday, and only take in water and not anything else (no tea or juice or anything else). I do this when I get partial bowel obstructions, or when my stomach just will not let me eat solid food (based on symptoms).

I find it very difficult to eat more than two meals in a day - my body simply cannot process that much food. And small, frequent meals also do not work for me - I still get full after the second small meal, and then it takes all day for the food to go through, and then I get really super hungry at bedtime...but can't eat then if I want to sleep at all.

And I have also found I do not do well with animal proteins (except some forms of dairy), probably because of my nutrigenomic variants that cause me to react negatively to sulfur amino acids (higher in animal proteins vs. plant proteins).

Getting sufficient fluid intake is essential to gastrointestinal function. This is my greatest challenge right now because I simply cannot swallow liquids without much struggle and pain. Warm or hot liquids go down much easier, but don't stay down unless I eat something immediately after drinking. So I use my feeding tube for liquids, but my gut still won't tolerate enough fluids even with the feeding tube. So I have to get 1 liter of half-normal saline (4.5% saline) daily via my PICC line. I am working on trying to figure out how to increase my gut's tolerance of fluids, but do not think it will until I can conquer the Lyme.

Getting rid of the gallbladder full of stones & inflammation (I'm guessing Lyme played some role with causing this) helped enormously. I was constantly nauseated prior to the surgery...this nausea disappeared immediately after the surgery. And my stool consistancy and color improved also after the surgery.

Strong Lyme treatment usually shuts down my gut and makes it stop functioning (i.e., nothing put in my stomach goes anywhere...I taste it and burp it up for days, and I also stop having bowel movements ~ these "gut shut-downs" can last anywhere from a week to a year...at least, that's been my experience). Doxycycline (via IV) caused this to happen, and so did Buhner's Protocol (suspect specifically the Japanese Knotweed - this is what ended my ability to swallow in 2008 and I have only recovered the ability to swallow some solids & only warm/hot liquids since then). So while I know I need to get the Lyme/coinfections treated to resolve the gut problems from Lyme, I have to do so very slowly.

Disclaimer: The above things help me. I cannot guarantee they will help anyone else, as everyone is unique and every person will be affected differently by Lyme. And homeopathy in particular is usually best prescribed for each individual & unique set of symptoms and so my experience will may or may not mirror anyone else's. Please always discuss any changes in your treatment with your doctors and pharmacists first before trying them - this is for your own safety!

Take care,

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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klutzo
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Enzymes are a must.

L-Glutamine powder, 5 grams in a glass of water on an empty stomach, is amazing for restoring normal digestive mucosal protection and also helps you make glutathione, a huge bonus.


klutzo

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ukcarry
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Razzle, what a nightmare for you.

Thank you so much for the detailed information you have posted,

allthe best,

Carry

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renny1985
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Hi- Thanks everyone for all the info put here. I am going to print this and save it and work on incorporating some of this stuff into my regimen. I am thankful to have you all out there.

Did anyone get relief from GI symptoms from actual TREATMENT? Like an abx or herbal or anything for Lyme and co's that helped with the gI symptoms in the long term?

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merrygirl
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geez razzle, what a nightmare!

i had/ have chronic diarrhea since getting lyme. I could be in the bathroom 10 times a day easily. But 2 things that help me.

Going easy on probiotics. For some reason if i take them things get worse. I only take them once in awhile. My llmd says that means i need them, but he isnt the one stuck in the bathroom all day.

Also when i take bicillin things improve. I dont know if its just one less abx going through the gi tract or what. I still take zith orally and i would say switching to bicillin ( from omnicef) made a huge difference.

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Hambone
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quote:
Originally posted by merrygirl:
Going easy on probiotics. For some reason if i take them things get worse.

I'm finding this to be true for me. The stronger the probiotic, the worse the pain gets.
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MichaelTampa
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Hey Renny,

I have had GI symptoms, loose stool, food sensitivities, acid reflux, that kind of stuff, since childhood.

It is improved a lot since lyme treatment, and I maintain hope that when I am done it will be better.

I have tried xifaxin, it improved things for a couple days and then things were worse than before. It probably killed a lot of things, but then that made room for the worse things to grow more. I appreciate my doc at the time thought to try it, but in retrospect, I wouldn't recommend it in most lyme cases.

GlutAloeMine from Xymogen has been wonderful for me in terms of healing the very distressed/sore esophagus and stomach (from acid). It has L-Glutamine and DGL and arabinogalactin and a small amount of aloe vera.

Remediating mold also made a huge difference recently in getting rid of the acid reflux, and now I can sleep flat in a bed whereas I could not do that before. But I don't believe mold was the only problem, as I traveled enough over the years and acid reflux was still there, and certainly some of those hotels and friend/relative houses did not have mold. So again, I think it is more like, just a slow and steady road of all the various aspects of lyme treatment slowly making a difference.

The AI treatment has helped with the food sensitivities, so, helped some, but again, for me, it's just been slow improvement.

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MichaelTampa
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quote:
Originally posted by Hambone:
quote:
Originally posted by merrygirl:
Going easy on probiotics. For some reason if i take them things get worse.

I'm finding this to be true for me. The stronger the probiotic, the worse the pain gets.
I know some who experience this have been diagnosed with Crohn's, and so they avoid the probiotics.

Of course, as Crohn's is autoimmune, I think that is a situation where maybe lyme should be looked into as perhaps a bigger part of the picture. But in any event, just might suggest considering if you have Crohn's or not, would be good to know if you do I suppose.

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Amanda
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When I first began developing lyme symptoms, I had everything you describe, constant nausea, I lost 50 lbs, vascilating diarhea/constapation, gastritis etc...

The first set of abx I took was a 14 day course of a Helidac pac. Its a combination of tetracycline, flagyl and peptobismol. I herxed like hell. I took a week break, then switched to Ceftin. I noticed after the first month of Ceftin, my nausea getting better, and by 4 months of Ceftin, ALL my GI symptoms were completely gone.

Unfortunately, that was about the time Babesea raised its ugly head, and then the lyme went deeper into my joints. I have struggled with arthitis issues since then. But GI stuff is all gone:)

I can always tell when a new abx isn't working because I get nauseated again (plus this kind of gag feeling in my throat). Also, if I back off the antimalarial meds.

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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sammy
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Recent studies have shown that Xifaxan (rifaximin) may be helpful for some people with IBS type symptoms. It would be worthwhile to ask your doctor for a two week treatment trial. I doubt it would help much with Lyme symptoms though because the med isn't absorbed systemically.

In my personal experience Levaquin and Factive have been the only two drugs to really help reduce the severity of my GI symptoms. I struggle with gastroparesis and vagal neuropathy which causes slow digestion, constipation, abdominal pain, and distention.

I take digestive enzymes to help with digestion, lots of magnesium (about 5grams) and miralax for the constipation, zofran as needed for nausea, and librax for abdominal pain episodes.

It takes alot of trial and error to find what helps. Hopefully things will return to normal once these infections are gone.

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renny1985
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Thanks for all the advice.. did you guys test positive for Bart and Babs? I tested negative for both but I know they often come along with a lot of GI symptoms, maybe more so then Lyme.

I have had 4 colonoscopies/endos and many CT scans- no crohns but inflammation in esophagus, stomach, duodenum, sigmoid and mesentery.

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