posted
HI all, My 4 year old daughter got bite by a tick behind her ear in April and again on her scalp in June. About 3 times in the past couple weeks she has had leg pains to the point of crawling around the floor. maybe she's a little dramatic but she says her knees and calfs hurt.
Of course her ELISA test was negative. Her doctor says it sounds like growing pains. He said he will humor me and run the western blot even though the ELISA test is very accurate and often has false postitives.
What is going on with these doctors???? do they not care about their patients? It doesn't hurt to test and have it come back negative! what does hurt is when they don't test and the patient goes years undiagnosed!!!
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
My daughter has had leg (calf)pains but now its very hard to determine what hurts as she has numerous symptoms and its hard even going to the MD's to pry them out of her.
ELISA has at least a 30% false negative rate and the WB can also give a false negative. Be sure to obtain the WB readings to see if there is evidence to exposure to the LB bacteria.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
My daughter has never had leg pains before. Her legs, knees and soles of her feet were red and i want to say alittle swollen but she has thick legs so it's hard to say. The doctor looked at me like i was completely crazy when i kept insisting on further testing.
this is the same doctor who 2 years ago told me my sons neurological symptoms were not related to lyme disease. I changed doctors and he had band 23, 41 and 66 positive on the western blot last month.
Hopefully her results will be back tomorrow. I'm praying everything is negative.
Posts: 28 | From nh | Registered: Jul 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Sorry to hear this. The leg pains were early signs of lyme in my children. I had to figure out it was lyme but it took a year after those pains started for me to figure it out. My pediatrician didn't believe it was lyme.
I frankly don't believe in the growing pains thing, especially to the point that they cannot walk. Knee pain and calf pain are big red flags and were common with my kids. Ask your doc how calf MUSCLE pains could be growing pains!! I believe that is most likely bartonella.
The fact that others in your family are infected is also a big red flag. My entire family of 5 is infected. And the tick bites are a red flag too. Half of ticks are infected. Are you going to do an Igenex test?
I know it's terrible to think that she has lyme, but it's better to find out now and start treatment. I felt the same way after one by one, I found out everyone in my family of 5 was infected.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
My daughters nurse just called and said the western Blot was negative. The only details she had on the result said bands 23 and 41 negative.
I would love to get Igenex testing but there is no way i can afford it.
are 23 and 41 the only two lyme specific bands?
Posts: 28 | From nh | Registered: Jul 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I don't have my chart in front of me, but I'm pretty sure that band 23 can only mean lyme. 41 could be lyme but is not specific only to lyme. It is often the first band to show up when lyme is present.
2 out of 3 of my young children showed only band 41 through Igenex prior to treatment. Their diagnosis was based on clinical symptoms alone. Later into abx treatment, more bands showed up and 2 of 3 got a positive test.
My 4 year old daughter never got a positive blood test for lyme, even through Igenex, but did get positive babesia and bartonella tests, which confirmed that lyme was present. We more recently tested her with electrodermal testing and that showed lyme, bart and babs (and ehrlichia, which never showed up in blood work).
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I had leg pains at age 10 that I was told were growing pains. I developed many other seemingly unrelated symptoms throughout childhood and adolescents. The leg pains REMAINED.
I am 25 now and was diagnosed with Lyme in April, 2010. I believe I got it around age 10 and the leg pain was the first symptoms. I am scared it has damaged the nerves in my right leg.
Please please take your child to a Lyme literate doctor despite what the tests say. A course of antibiotics could save her from a lifetime of chronic illness like me. Sorry- I hope I am not scaring you.. just wish someone had told my mom this possibility when I was a child. Posts: 341 | From NY/FL | Registered: Apr 2010
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