My 8 year old has had problems with her stomach since birth..also born with lyme.

When she was 7 she had a colonoscopy and endoscopy. The endoscopy showed inflammed cells in the esophagus and they put her on prevacid which did nothing.

Doc wanted me to give her steroids and I said no way...long before her lyme dx.

Here's the problem...her stomach problems are back again and she's been having lots of problems. Acid reflux is not really the problem it's more pain. I took her to the ER a week ago and they said she had a lot of stool show up on the x-ray and they think it's constipation and gave her an enema.

LLMD says she probable has lyme bugs in the gut and they've put her on flagyl.

Has anyone had this experience and what did you do? Honestly, I don't know what the GI doc could do unless I get someone new. This is the second one she's gone to. The first one said she had IBS.

Any ideas anyone and how long will it take for flagyl to work if lyme is in the gut?

 

just try to get another antibiotic prescribed along with the flagyl.....
 

Sorry to hear about the little one.

I'm tired but thought I would toss out a few thoughts for you to consider.

Not sure who the LLMD is.. but it very well could be Lyme affecting the GI track.

Also.. Bartonella is famous for causing stomach problems.

Hold on.. let me see if I can find some info...

This will have to do for now.. but I can check back after I get some sleep... ok?

This doctor is THE man. He has been doing biopsies and may be able to help??

He biopsied a number of patients and found evidence of Bart in the tummy... and throat area from what I recall... and I THINK he works a lot with children.. or only children.

Sorry.. gonna fall over if I don't quit here...

http://www.lymepa.org/html/about_martin_fried__md.html

Martin Fried, MD
Director of Pediatric Gastroenterology and Nutrition
Assistant Program Director, Department of Pediatrics
Jersey Shore Medical Center, Neptune, New Jersey

Dr. Fried has been treating patients with Lyme and its co-infections for many years in an
endemic area of New Jersey. He has participated in tick studies and published the first
paper showing a high percentage, over 40%, of ticks collected from patients in NJ were
predominantly infected with Bartonella henselae. Borrelia burgdorferi (Lyme) was found
in about 30% of the ticks in the sample. As a recognized expert, he also testifies in behalf
of patients in legal cases involving potential misdiagnosis of tick-borne disease.

Publications & presentations (not inclusive):
``Confirmation of Chronic Lyme by PCR of Intestinal Biopsies''

Martin D. Fried, MD; Dorothy Pietrucha, MD; Gaye Madigan, RN; and Aswine Bal, MD.
Borrelia burgdorferi Persists in the Gastrointestinal tract of Children and Adolescents
with Lyme Disease. Journal of Spirochetal and Tick-Borne Diseases. Vol. 9, No. 1, 2002.
pp. 11-15.

``Co-infections in Persons with Chronic Lyme Disease''

Presented at the 2003 Lyme Disease Foundation International Conference
Hartford, Ct. ``Co-infections and the GI System''

The Lyme Disease Association Conference, November 4, 2000
Lyme & Other Tick-borne Diseases: Focus on Children & Adolescents
``Review of Borrelia-driven Infections of the Gastrointestinal Tract in Children and
Adolescents''

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Int J Surg Pathol. 2003 Jul;11(3):241-4.

Upper gastrointestinal bacillary angiomatosis causing hematemesis: a
case report.

Chetty R, Sabaratnam RM.

Department of Pathology, Nelson R Mandela School of Medicine, University of
Natal, Durban, South Africa.

A 38-year-old HIV-positive woman presented with massive hematemesis on initial
admission to hospital. Endoscopy revealed ulcerated nodular lesions in the
esophagus, stomach, and duodenum. The clinical impression was of Kaposi's
sarcoma. The stomach was biopsied when the patient re-presented, and another
endoscopy was performed. The biopsy showed mucosal ulceration with a
proliferation of vascular channels associated with neutrophils and clumps of purplish,
granular bacterial colonies, which were highlighted by a Warthin-Starry stain. The
histopathological features were typical of bacillary angiomatosis. This case highlights
bacillary angiomatosis involving the gastrointestinal tract at multiple sites, the cause
of massive upper gastrointestinal hemorrhage that was the initial presentation of an
HIV-positive patient, and the occurrence of visceral bacillary angiomatosis in the
absence of cutaneous lesions.

Publication Types:
Case Reports

PMID: 12894361 [PubMed - indexed for MEDLINE]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Clin Infect Dis. 2004 Aug 1;39(3):e21-4. Epub 2004 Jul 9.

Disseminated infection with Bartonella henselae as a cause of
spontaneous splenic rupture.

Daybell D, Paddock CD, Zaki SR, Comer JA, Woodruff D, Hansen KJ, Peacock
JE Jr.

Section on Infectious Diseases, Department of Internal Medicine, Wake Forest
University School of Medicine, Winston-Salem, NC 27157, USA.

A 65-year-old man developed massive hemoperitoneum secondary to spontaneous
splenic rupture. Histopathological analysis of the spleen demonstrated necrotizing
granulomas. Results of serological tests indicated infection with a species of
Bartonella, and immunohistochemical staining established Bartonella henselae as the
cause of splenitis. To our knowledge, this represents the first reported case of
spontaneous splenic rupture caused by infection with a species of Bartonella.

Publication Types:
Case Reports

PMID: 15307019 [PubMed - indexed for MEDLINE]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Dr. Fried sounds like the doc we need to see. I just wish he wasn't so far east.
 

Call him and see if he will confer with the doctor you have. Is your doctor trainable?

Or maybe you could see him one time and then your doc could administer the meds?

Your a good mom and you are doing a good job.

Linda
 

I was not born with Lyme, but people can genetically make too much stomach acid--antibiotics will not change this situation. You have to take a drug that actually stops the extra production of acid.

Fortunate for me (and others) there are now drugs that can do this.

I have ulcers, h. hernia, and ulcers in the esophagus. Even injectable medications (such as morphein) cause severe gi pain because they are so acidic.

I havent had much luck with prevacid or any other over the counter meds.

But what works for me is a new drug called Protonix. You can get a sample from your Dr. I would have her try that. I have had wonderful results.

When I was a baby, my parents were able to keep the pain down to limiting me to goat milk.

I wouldnt doubt that your daughter also has IBS.

[This message has been edited by Kara Tyson (edited 10 June 2005).]
 

best wishes -- email me if you want Fried's phone #
 

His symptoms were almost constant nausea type pain and IBS of constipation with bowel incontinence.

Treatment included Zantac for stomach acid, miralax for constipation and another med I can't think of the name right now for food allergies (which gave him fibromyalgia symptoms so we stopped it).

He remains on the Zantac still and we recently added Prilosec too. Zantac seems to work the best. I think it is because it has some antihistamine properties.

Now I am not a doc, but I would think that flagyl on an upset stomach would be very hard. I took it for 3 weeks and it caused me a lot of nausea. Which is one of the reasons I did not continue to take it. My son could not tolerate it either.

And like another person wrote, I had a lot of neuro symptoms appear while on the flagyl. It definately is not my favorite med. Seems like there are kinder meds to take to kill the lyme without insulting the stomach.

We went on to discover that he was allergic to corn. (Corn is in almost everything!) So we de-corned our house and diet. His stomach/bowel issues resolved quickly except when he was accidentally exposed to corn. Also, his asthma improved dramatically.

You didn't mention what dose of flagyl your daughter was on but on the low dose I actually felt better (1/4 tab of 250mg). When I increased it was when the nausea and neuro symptoms started.

Hope your daughter is feeling better soon!

Karen

Protonix sounds good Kara.

I doubt any doc where I live would be on board with lyme. Most docs do not believe it exists in this part of the country. I think she was born with lyme but am not positive. Last August she went to my in laws in Houston.

They live in a very wooded area and when she came home she had bite marks on the back of her leg. A day later her neck started hurting along with a horrible sore throat. At that time, I hadn't been diagnosed.

It's possible she wasn't born with lyme but had horrible GI problems and got bitten last summer in Houston.

Susscho, her Igenex testing for lyme was CDC positive...the one that shows current infection not the other one so who knows.

The prevacid helped that, but she also has stomach pain (her gastro doc told her it was all in her head, don't ya love it!) Anyway, since then her LLNP has put her on Nu-lev as needed.

I do think it helps some. The NP said it would work on the GI and urinary tract. You know sometimes the pain we get in our abdomen seems like GI, but in fact is our bladder spasming(another lovely lyme symptom).

Sounds like the bowels are involved though. I used to give my daughter Mineral Oil (mixed in some juice) from time to time to help evacuate the bowels.

I know all this talk of bowel movements is gross, but the oil really works, if you can choke it down! I hope things are better soon for your daughter.

That's what I have on the subject, for what it is worth. Take care!
 

This brochure and artilcle is what got me thinking about the possiblity that my son has Lyme. He was having stomach pains without any fever and I could tell they were real. combined with being told he is ADD inattentive i began to wonder.

A friend whose children all have Lyme began educating me, She was told her own son had Chrohns disease before he was tested positive. I finally had my son tested. He is postive.

At three weeks old my son wsa "colic". You could tell he was in great pain and that it was abdominal. He would cry for hours every evening. It was horrible for his father and I and I'm sure much worse for him.

At three years old we had to take him to Childrens Hospital two days in a row due to severe abdominal pain. Xrays showed he was severely contispated. Doctors blamed it on what he was eating. I couldn't understand then because his diet hadn't changed. Now I know the truth. I was so impressed by childrens then......I wish I knew then what I know now.

With everyone responding I think you can see that gastroinstestinal issues are a big problem for children with Lyme. Even now with my son being treated he still has abdominal pains.

I was given some suggestions from people here at this site and I've actually tried some. For example, he likes to have a small piece of peppermint when his stomach aches. Not sure if it really works but he believes it does and it makes him happy.

It amazes me how many children I am hearing about that have Lyme. It doesn't seem fair and breaks my heart. Children shouldn't have to suffer.....