posted
My 12 year old daughter's first symptoms were stomach pain (high up right between the ribs) and nausea. Xrays always showed constipation. This led us to a pediatric GI doctor who ended up doing weeks of a "bowel program" to clean her out and and an endoscopy which was normal. Abdominal ultrasound and CT were normal, except for "thickening" on an area on the upper colon. I always assumed those were symptoms, not cause of the problem.
She has been diagnosed with Lyme now and we are seeing s LLND? who is having her tested for food allergies. At first ND wasn't convinced it was Lyme because of stomach problems, then we had a reactive band on the Western Blot. I found article on "palsy of the gut" which I thought related to her symptoms. She also has many other symptoms now, many of which are appearing as she is on ABX.
My question is whether anyone else has had constant stomach issues and what this might mean. I don't even know how to test for parasites, other than stool cultures that the regular MD ran which didn't find anything.
Posts: 312 | From Utah | Registered: Nov 2010
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posted
This is quite common for Lyme. It is called gastropersisi.
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"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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Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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jackie51
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posted
Oddly enough, when I started my medical odyssey it was from stomach pains. 6 months later I got the high fever. Don't know if these two symptoms were related or not, but I don't have the stomach problems anymore.
Food allergies are quite common in lymies. From what I've read here, Babs can trigger allergies. If you want to nip this in the bud, take her off sugar, gluten, & wheat. She's not going to like it, but there are good rice crackers, rice noodles, etc. I think some folks also say no dairy. Make sure she takes a Multi-vitamin that is okay with the doctor. And, have her drink water. A lot of kids don't want to do that. I also have a 12 year old so I know the story.
She could also be near starting her period. Mine started 3 weeks after her 11th birthday.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
The GI doctor did the endoscopy, which was normal. Two days later we went to ER in extreme pain, throwing up with diarrhea. That's where the CT was done. The report says "There is possibly thickening of the wall of the colon from mid transverse to splenic flexure...measures up to 7 mm thick."
When GI doctor reviewed CT, she didn't think colonoscopy necessary. I then saw a second pediatric GI, who concluded with the first. But she did feel the cause was parasites. I laughed when she prescribed 3-day course of Alinia. (After months of this, could this actually cure her?) It didn't. She then prescribed flagyl. Never filled the prescription, because this was when we also saw the LLND, who concluded she has Lyme.
So, I see alot of you that treat for parasites along with the Lyme. How was that diagnosed?
I think the doctor is wise checking for food allergies. I'm just impatient.
Her symptoms are constant nausea, constant upper abdominal pain, other abdominal pain moves around, Some pain with bowel movements (but has improved), numerous x-rays showed constipation - so slowed perstalsis. Diarrhea and vomiting only a few times.
Other symptoms are neck pain, back pain, headaches, eye problems and pain, shocks inside, fatigue, some thinking problems. Pain keeps popping up in different places: shoulders, ribs, feet, knees.
She is on doxycycline and cat's claw. I think we are doing a "challenge". Had second Western Blot after 3 weeks treatment. Awaiting results.
Sorry so long, but I will say that she had a tick bite in June.
I have had her off sugar, but not religiously. Did two weeks without wheat and dairy. I think the ER visit was caused by her eating two small candy bars (Halloween!)
Also to note: she started her period in October!
Posts: 312 | From Utah | Registered: Nov 2010
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jackie51
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posted
Oh, I forgot. No processed foods or Mc'D's. She has to eat real foods, so teach her to read labels. Stay very far away from anything like "natural flavoring", "partially...", "color # added for coloring". You get the picture.
When my kids beg and I give in, I'll "treat" them to McD's. It's not 5 minutes when they say "now I know why we don't eat at McDonald's". They both get stomach aches. Of course, this is probably true for most people.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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jackie51
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Sorry, you must have been typing when I was typing. You've got quite a handful of symptoms there that I wasn't aware of. My answers are probably way too simplistic for you, my apologies.
You are further along this rough journey than I had thought. My best to both you and your daughter.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thanks everyone! I do feel pretty good about the Lyme diagnosis. Just hope we are also hitting parasites or coinfections too. It's so hard to take it one thing at a time! We've only ever had illness that lasts a couple of weeks in the past.
My heart goes out to everyone that has had this for such a long time. Hoping I can stick it out.
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Hey there- I have the SAME symptoms are your daughter. My GI problems are awful. I have been on a hunt for a GI diagnosis since I was 18 (25 now). I had other symptoms before the GI like headaches, knee problems, severe leg pain, general malaise etc. GI problems seemed to get more and more severe, and still are.
I have nausea, abdominal pain upper and lower, diarrhea, upset stomach feeling, gas, bloat, headaches, leg pain, knee/neck/jaw/shoulder pain, tingling, heart palps, fatigue..and so many others. I have CDC positive IGM WB. Not sure about other infections. My CT scans of tum showed "thickening" and inflammation and mesenteritis... everything nonspecific- GI docs have been USELESS to me.
They always say IBS. I am way too sick for IBS.. plus why thickening and inflammation if IBS? IBS should have none of that. Inflammation/thickening is never "normal". I hope that you can get helpf or your daughter.. of you do find something.. please post. I am searching endlessly, trying everything, for many years. I know this doesn't help you and I am sorry...
I just want you to know I understand and if your daughter ever wants someone to chat with... I was 10 when my symptoms started so I get it. PS- I have heard mixed things about Lyme causing GI problems, but I believe it can and did for me... if it can effect the brain and joints and heart why not the GI organs? Also.. I have heard Bart can cause lots of GI stuff and babs sometimes too.
Sorry so long! Good luck and keep us updated.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
H pylori tests were negative (she had biopsy and blood test)
Posts: 312 | From Utah | Registered: Nov 2010
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Remember to Smile
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posted
sickofsick and renny1985, I can relate!
Some of my lower GI pains were later called Crohn's disease. Another diagnosis was endometriosis. I believe both of those are just manifestations of bartonellosis.
apljack is spot-on to encourage a whole-foods diet to reduce inflammation. Look up "Diet for colitis" as well as "yeast control" or "Candida-control diet."
Tammy N. introduced me to The China Study by Campbell. Wow. It will rock your world. Campbell shares hundreds of studies done worldwide that show we shouldn't eat wheat or dairy if we wish to be healthy. (And he happily grew up on a dairy farm!)
GI ducks are worthless because they just wanna use their scopes yet know nothing of sound nutrition or gentle solutions to GI problems.
Lyme Bb messes with hormones, so PMS and menstrual pain can worsen with neuroborreliosis. Interestingly enough, all the dietary recommendations for endometriosis, colitis, and Crohn's dovetail with a sound LD diet. You won't be harmed by eliminating dairy & wheat, it will just decrease inflammation in the body that leads to pain and dis-ease.
Forget results of a Western Blot now. You've got plenty of LD symptoms, and it's a clinical diagnosis. That means the symptoms & case history are more important than lab work.
Read and re-read ILADS Dr B's "Diagnostic Hints and Treatment Guidelines" (16th edition, Oct 2008).
posted
My doctor gave me alinia 10 days at 2x a day. It worked and my intestines stopped bothering me.
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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Smile, I'm going to the llmd tomorrow. I never realized that you had crohns too. I look forward to talking to you. GG
-------------------- 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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Smile, How was your bartonellosis diagnosed? Our doctor ran a Bartonella Antibody Panel through LabCorp which was negative. Are those tests also unreliable? We're still so new to this disease but I'm concerned that we aren't getting tested for coinfections. My daughter is getting the sore feet symptom and when the doc first saw her rash she thought it looked like bartonella. Doctor stated that the treatment she uses for Lyme will also treat the coinfections.
Waiting for test results and doctor appointment is making me crazy!!
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Renny, Sorry you've dealt with this for so long! I know she is sick of feeling nauseous 24/7. She seriously walks around with a bucket lots of the time! (But rarely throws up) I'm sure you experienced the same reactions as us. To many doctors, her age + stomach symptoms = anxiety. They made a diagnosis when they first walked in the room! Real quick to prescribe some sort of antidepressant too. The one GI doctor asked me to let her know if we figure it out, in order to help other kids in the future. You can bet I will be doing that. Feel like I need solid test results first.
posted
Dear sickofsick and renny1985, I may have Endometriosis causing my trouble now, but had a bad gallbladder removed at only 20 years of age. This is good to look into. Testing for it includes a HIDA scan and/or abdominal ultrasound. Strangely, mine actually showed up in an abdominal CT, which is rare. Accuracy with that procedure for diagnostics is much lower than for the other two when it comes to gallstones. I have experienced the exact same issues with physicians time and again.
IBS is a fake disease that GI doctors made up when they have no freaking clue what is causing the stomach issues. The pain below the right rib area is a good indication of gallbladder trouble. Constant nausea and extremely loud belching tends to be present nearly all of the time with this condition. Lactose tends to be an issue for people with bad gallbladders. Another interesting thing is that ginger often worsens the reflux and indigestion, since it increases the flow and production of bile. Gallbladder Disease may be at least a major contributor, but I cannot say whether the thickening of the intestinal wall is caused by this. However, individuals with Celiac Disease often experience intestinal damage and gallbladder issues are common with Celiacs as well.
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