posted
I have noticed that in the last several weeks there have been many people posting about GI/abdominal pain.
My daughter has had severe debilitating abdominal pain for two years that has prevented her from regularly attending school.
She was hospitalized at one point and given morphine for the pain.
Not one GI doc was able to help her with the pain. "just make sure she goes to the bathroom every day" "all she needs to do is eat a balanced diet" Hard to believe I had to pay for what I already knew.
She was treated aggressively for LD, babesia (before the GI pain began) so we did not connect this symptom with TBI.
She was dx'ed with things like IBS and functional abdominal pain. She went through every test imaginable and we tried every possible treatment for those conditions. Nothing helped.
Ultimately her endoscopy slides were sent to Clongen and came back PCR+ for LD. So she resumed LD treatment in hopes that would eliminate the pain.
It didn't. She was then prescribed an old antidepressant to help blunt the pain and help her sleep. That helped to a certain extent.
But we still had many nights where she was up til almost dawn crying/screaming in pain. And there was nothing that helped during the day.
Treatment for Bart (which she tested + for in a addition to being clinically dx'ed with) also began and that didn't help either.
After two years of hell, we ultimately saw a LL naturopath.
Naturopaths look at the body differently and their knowledge base is different from MDs. I'm convinced that having a LLMD and LLND is the best way to go with these dds.
The LLND explained to us how Lyme, IBS, serotonin are all connected. Apparently, chronic illness reduces your serotonin levels and therefore increases your pain. I'm greatly paraphrasing--there is so much more to all this.
My daughter was prescribed 5-HTP. She was also tested for SIBO (small intestinal bacterial overgrowth) which was positive and was then prescribed xifampin aka rifaximin, an antibiotic that stays in the small intestine.
You'd think that one of the pediatric gastros we saw would have thought of that!! Especially since SIBO is pretty mainstream. Dr. Pimental at Cedars-Sinai has being doing extensive research on this.
The LLND also recommended a gluten-free diet which I initially dreaded. But it isn't really that difficult to follow once you're in that frame-of-mind.
Between the 5-HTP, xifampin and gluten-free diet, my daughter has had significantly less pain. She continues to take mag supps as well as probiotics. I am hopeful that she will be returning to school part time very shortly.
Pain like my daughter has endured is too easily dismissed by others as a "stomachache" or "tummy trouble" or "nervous stomach"
Few understand the severity of the pain and how debilitating it is.
I hope this helps somebody. I really do feel for all of you/your kids who are going through this.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I find this information very interesting as I have suffered with intestinal pain for many years now. I am going to try the 5-HTP as well. I think instead of the abx since they do eliminate the good bacteria and disrupt the intestinal flora I may try enteric coated peppermint capsules.
Thanks for taking the time to share your story and that of your daughter.
We went and a full GI workup after years of being told it was constipation. Anyway, the only thing that came out of it was that she was fructose intollerant.
We do see an LLND and am so grateful that we do. She is wonderful. I don't know that I will ever rely on allopathic physicians again.
In the year that we have known about Lyme, she has drastically changed her diet. Totally dairy free, almost sugar/gluten free (one day a week to eat what she wants).
However, given the troubles she's had, we are going to finally make a clean break and go totally gluten/sugar free.
I am excited to go to the LLND appt next week and see the blood results, but also scared. I just don't know what to expect...
Thanks again!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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chiquita incognita
Unregistered
posted
This is such interesting reading, thank you very much Alanasuzanne and all of you who contributed here!
It's very heartening to read the great experiences you all had with naturopaths.
There is a campaign in mainstream press to do bad press to naturopaths. One such article was cross-posted to hte general support section, titled "licensing naturopaths?"
If you feel like responding to it, it might be helpful.
I am not an ND or a naturopath by the way.
Anyway.....
Here is some interesting info about meadowsweet herb.
It contains salycins and is the herb from which aspirin used to be made. Yet at the same time, the plant also is somehow wise and provides abundant mucillage, a gel-like substance that coats the digestive tract and has great soothing action (about 80%+ in marshmallow root, fyi).
The counter-balancing act of the mucillage with the anti-inflammatory salycins not only beautifully protects the stomach from ulceration as mainstream aspirin does, but further, the herb is used for ulcers specifically!
Licorice root can help too, use the deglycerinated product, so can digestive enzymes.
Obtain Meadowsweet at Star West Botanicals in CA. Hard to find herb, but they have it.
For infections, of course abx may be necessary and your doctor is the one to call the shots here. For mild or moderate, berberines (from goldenseal, and other herbs that have a yellow color which is also anti-bacterial) can be good for the digestive tract. The product Candi Bactin BR by Metagenics is very good. Berberines are supportive for Candida programs in particular. It's also the yellow/disinfectant part of goldenseal, which is useful in many kinds of infections, colds and flus.
If there is an ulcer, I would not recommend berberines, except in extremely dilute dosages, or they will cause pain. In irritable bowel, can be supportive to the digestive mucosa, but again I would start with very small dosages to test for tolerance.
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor.
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posted
lulu, could you see a LLND before taking the 5htp? You might need Pyridoxal-5-Phosphate in addition to the 5htp to help absorption.
And the enteric-coated peppermint oil caps are a very good supp. Heather's brand I think is particularly good. Hope you are out of pain soon.
Kellye, yeah I know all about the constipation thing. I could do about two hours here on that alone. Guessing you and others could too.
We haven't heard anything about fructose-intolerant. We haven't done the sugar-free diet. We tried dairy-free but it didn't make a difference.
Going gluten-free wasn't really as hard as I thought it would be. And after being GF for 3+ months we recently had "regular" pizza with no ill effects.
I totally understand that your daughter wants to have one "free" eating day. But you really have to go totally gluten-free for a few months.
There are a lot of really good "goodies" that are GF. And you don't have to tell your daughter that they're GF. Let her think she's having a day off. One of my favs are the raspberry jell rings. Who knew something sooo good was GF?
I think the gut needs time to heal. Going GF when you have TBI especailly if you have GI issues is a good idea IMO.
Kellye, don't be scared! You are ahead of the game!
Chiquita, thanks for bringing attention to the campaign against naturopaths!! I had no idea. This is very disturbing.
Never heard of meadowsweet. Heard of marshmallow but unaware of its properties. I know chamomile is known for its soothing properties. With licorice one has to be cognizant of possible BP issues.
Thanks for the link to meadowsweet. And more importantly for the info about naturopaths.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Thank you for sharing...I am so sorry your dd was in so much pain. It is so hard to watch our kiddos suffer
I have been 'round here complaining of stomach issues as well and will second the Peppermint Oi caps...I am on my 4th day and have gone from pain every time I ate(and even when I didn't) awful gas and bloating to...NOTHING. The only thing I changed was adding the peppermint oil.
I still have to be careful of nausea, as I find if I take all my supplements together I get queasy and vomit. Now I space them out over about 10-15 mins. with lots of water and am fine.
I am already GF, and now am starting a Yeast Diet as well...I ate well before but was probably eating 50% of my calories from fruit, OJ, etc... I am hoping that continues to help as well.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Oh, and Bob's Red Mill makes lots of GF stuff that is GREAT! Their cakes, pancakes, brownies, etc are all super. Not sugar free, but if she doesn't have yeast issues these could be her 'cheats'...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Share the same story with you! My 11 old daughter....severe stomach pains around the midsection/navel area...PAIN, Stomach distention, gas, Crying and A lot of missed school days.
We did almost every test but I drew the line at the Bioposy! EVERY test result was NORMAL...indicated NO problems except a lil acid reflux and lactose intolerance.
Fast forward....have done GF Diet for past 6 weeks and Symptoms have almost diminished except for an occasional flare...but much more tolerable!
waiting for Igenex to rule in/out Bart....but I think we're on the right track.
Thanks for sharing and giving me another avenue to explore Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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posted
I believe its not low levels of serotonin but rather too high levels... the pain comes from the colon scereeting too many neurotransmitters... But keep us posted and let us know if the new treatment helps her.
Posts: 723 | From Montreal | Registered: Oct 2010
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I have simular issues. Rifampin/5htp did not help my severe ibs/constipation.
What helped me was iv rocephin. I had no pain or spasms, great bms's the whole time on rocephin. After 3mo. One week coming off rocephin all my ibs symptoms came back. hmmmm...
I'd be interested in trying the meadowsweet, sounds interesting.
-------------------- 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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posted
raw vegan, thanks. Yes, it is extremely difficult watching our kids suffer. I know we'd all take their suffering from them if only we were able.
One of my daughter's symptoms was/is nausea as well. The peppermint oil caps help with that. And Heather's brand contains ginger which also helps with nausea.
As for the yeast, my daughter is on diflucan. At one point she tested + for candida in a blood test, which I found pretty scary. So having diflucan on board is a good thing. Plus it does have activity against the lyme (but don't ask me exactly what--strainer-brain these days).
Thanks for the tip about Bob's Red Mill. I've already used the pizza dough. It's better than nothing (LOL). And I keep the all purpose flour on hand for making things like chicken cutlets. (I do the flour-egg-breadcrumb thing)
I've only seen a few of the flours---are there actual products like pancakes/brownies?
We have discovered the Betty Crocker GF brownie and GF choc chip cookie mixes. Pretty darn good! Junk food, yes, but the kids do need an occasional treat.
I don't mind the mixes (add eggs, water, oil) but I am not going to be making my own bread or pancake batter anytime soon!! And maybe it's just as well from a yeast point of view.
Jenn, my daughter's pain is in that same area. They refer to it as "peri-umbilical" pain.
I can relate to every test being normal. During her endoscopy a biopsy was done which was "normal" Test showed hiatal hernia which did not explain the severe pain. But biopsy slides were later sent to Clongen and came back pcr+ for lyme.
Colonoscopy was "normal" as well except for the fact that the GI doc who performed the procedure showed us a picture and told us there was clearly inflammation.
But the covering doc told us no, there was no inflammation and the final report said no inflammation. So what to believe--the picture or the report? Moot point at the end of the day.
Post-surg, she had several bloody BMs, which we were told were "normal" (we had "idiot" on our foreheads that day apparently).
And after the last bloody BM, we saw things moving around in the toilet. Shortly thereafter we began treating for parasites as well which I forgot to mention in my original post.
Note that your daughter's bart test might still be negative. That too is a clinical dx. My daughter's bart test came back + just recently.
Shahbah, the way it was explained to me is that low serotonin levels were a major reason for the extreme pain. I wish I could explain this in the same detailed logical way it was explained to me.
TS, FWIW my daughter couldn't even tolerate the lowest compounded dose of rifampin. I don't think I wouldn't even consider that particular med again. I know it has helped people here but it just doesn't sit well with me.
When you were taking the 5HTP, you might not have been able to absorb it. I've been told that Pyridoxal-5-Phosphate (Vit b 6) helps absorption of the 5htp.
My daughter has never been on IV abx. I am surprised that the rocephin helped your GI symptoms. Perhaps your GI probs are from the lyme as opposed to bart or SIBO? Food for thought.
I apologize in advance if my responses seem scattered. My intention was to give a very detailed account of our experiences in hopes it would be helpful to others suffering similarly.
After enduring two years of this it's hard to remember all the details. Then again there are a lot of things I'd rather forget.
Best of luck to all of you who are in GI hell.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Same thing with my daughter...terrible, outrageous pain, GI doctor...stupid diagnosises, er visits, blah, blah, blah.
Went GF and ta da!...gone...she takes a digestive aid and an herbal recommended by her LLND and LLMD...a total 180.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
AlanaSuzanne Thanks you ever so much for the GI info. I'm not a child, but I am in the GI hell, as someone called it. I have written down every thing that I read here tonight.
Also thanks to chiquita incognita. Both you and others give your time and knowledge to help us and it very much appreciated.
P.s. I have taken peppermint tabs for some time and no help at all. Looks like I'm going to have to go Gluten Free, not looking forward to that.
-------------------- SEREN WEED Posts: 116 | From LOS ANGELES | Registered: May 2005
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posted
momindeep needless to say I feel your pain. And your joy! hope things continue northward!
Seren you are so very welcome. I'm sorry to hear you're in GI hell. Pls feel free to PM me for more info.
FYI like all things there is a great variety of quality when it comes to supps. I order certain supps from certain suppliers.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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chiquita incognita
Unregistered
posted
This is such a wonderful thread! Thank you all for all this valuable info! I am emailing it to myself for keeps for future reference. I love to keep on learning! Thank god my GI disturbance days are over.
For me, it was in my Candida days about 25 years ago and I would get spasms in the colon. Just not so funny at all. The pain was incredible! I remember how compassionate and understanding my NP was, unlike many others who think you are just making it all up and vying for attention. Yeah right.
She told me to massage the colon and it really helped, on the spot.
Of course it was a fungal problem, and with time it cleared up.
Going GF changed my whole life, not just my digestive stuff.
I get zero pains now, never ever, and completely recovered from environmental illness, endometriosis, recurrent ovarian cysts that were so painful I couldn't even roll over in bed, etc.....I know from conquering this that there is hope in every situation, no matter how acute it seems at the time. It' s ultimately (in looking back) a very empowering experience, though I don't wish it on anybody of course.
Best wishes to you all here! Thanks for such great pen palship, and again I am learning so much from you all! Love it. CI
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Bob Red Mill has pancake mix that I use all the time...its great! Brownie and cake mixes are great as well. I don't love the cookie mix...its not the same...Bisquick makes a gluten-free biscuit that is great, we have used that too. Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
I am I GI Hell! Thanks for this post. Mine started at 17... I have been through 4 colonoscopies, 3 endos, etc etc. All showed some inflammation but 'normal".
Thanks for the tips. I still don't know the cause of my GI problems. My stool was + for yeast, but I had GI problems way before that. I have Lyme, and negative Quest tests for Bart and Babs.. not sure if I have them though...
I should order some of the peppermint capsules. Nausea and abdominal pain are at the top of my symptom list. Thanks again Renny
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
What I have been doing is the SCD (specific carbohydrate diet) I love it. GI pain gone after 3 days. My husband who has to take lots of narcotics due to severe pain has been dealing with constipation. Guess what? It's gone.
I like this diet, becasue to me it makes sense and is a lot less restrictive of the foods we like to eat than others.
I love the homemade yogurt, and it's easy and good. Cheap too!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
A couple of things..... I have gi issues for most of my life. Has anyone considered gastorpersis due to Lyme. Google bell's palsy of the gut? It sounds like it. Hope she gets well soon.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
AlanaSuzanne,
Have you considered treating your daughter for parasites? I used to be rushed to the hospital with severe abdominal pain and projectile vomiting.
Parasites can play a HUGE role in Lyme disease and can cause this kind of pain. My symptoms went away when I treated with antiparasitic herbs. Dr. K. treats ALL of his patients for parasites first.
PLEASE condsider this as a possible cause for your daughters pain. Check out the symptom list at Humaworm.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
AlanaSuzanne, I'm so pleased to hear that your daughter's GI symptoms are so much better. Thank you for posting about her experience.
Chiquita, do you know anything about Iberogast, a herbal liquid used for various abdominal issues? Has anyone used it?
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