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Posted 6/1/2014 12:25 AM (GMT 0)
Their labs are back:

Daughter: Arthritis, neck pain, stiff neck, headaches, chest pain, confusion (even though she is in the gifted program)

CD57:55
WBC, neutrophils: low
Lymphs: High 56% Norm: 24-54

Son: Tingling extremities, shooting pains, insomnia, leg weakness, arthritis(only a few occasions), random anger, heat intolerance, tick history

CD57:53
%CD57: 1.4% Norm: 2-17%
IgG41: Present

Their DR called yesterday. He said he doesn't see anything wrong. He sent the labs. I just put the papers down to type this out. Now I'm a bit worried on what I should do now....or what to say to him.

Please give me some advice. I feel like crying but just holding it in. sad
Posted 6/1/2014 1:17 AM (GMT 0)
He is in the ILAD directory. So, I guess that's why I am so confused. Is he right, it's nothing? Or do I call him back, and then what do I say to change his mind? Or do I just get IgeneX for both?

Both have negative ANA and negative RF.

This is hard. Being sick and now worrying about them. I don't want them to get like me. This is no way to live....
Posted 6/1/2014 1:26 AM (GMT 0)
go right to igenex. it is worth it. it costs $270 for western blot only. I know its $540 total, but its your kids wellbeing here!

all three of my kids have/had it.
my younger two had IGM 41 (current infection), so the LLMD treated them. They just finished their 3 month course of antibiotics today, and are 100% thank goodness.

My older one had only IGG 41, and he didn't feel comfortable treating her.
I went to IGENEX with her blood and she came out clearly positive IGM 41+++ and 39++
but I was convincing enough that I got him to write the rx for the doxy before the results came back (bc her CD57 level was only 40!), so she got a 2 week head start.

I am so sorry you are going thru this, but DONT let any doctor stand in your way of your mother's instinct. When I first suspected it in my youngest daughter, nobody, including my husband believed me - they all thought I was paranoid. Well, I saved them from having chronic lyme.

where do you live?? I hope it all works out for you!!! keep me posted!
Posted 6/1/2014 2:17 AM (GMT 0)
Hi and Im sorry to hear about your kids. My son is nine and also has it. You need a second opinion pronto.
Good news is the kids respond readily to treatment.
Posted 6/1/2014 2:23 AM (GMT 0)
I would get the Igenex test for both of them.

After the kids have gone to bed - go ahead and have your cry and let it out.

And remember - children respond very well to treatment!
Posted 6/1/2014 2:48 AM (GMT 0)
thanks you all. I felt like I was doing this terrible journey for myself. And then it dawned on me a bit ago that this might be why they are both a little odd with their health.

Btw, I think my whole family thinks I'm paranoid. Like "Just bc you have issues doesn't mean your kids have to". But I'm their mom, I see it every day. Kids are not supposed to have arthritis or stabbing pains!

Chapelle, you are right. I'm going to. I just felt so numb looking at the paper today. I just feel hopeless. The medical community is telling me they are fine. they are supposed to know more than a homemaker right?!

Barngurl, thanks for the support. the ILAD told me he wouldn't know how to treat them. So it looks like I will have to ask questions here....

Thanks G, I feel so freaked out that I cant even cry if that makes sense...

Oh, do you know of a DR in Richmond VA by any chance? or close?
Posted 6/1/2014 3:01 AM (GMT 0)
Leilex that would not give me a good feeling about having this doc treat them. And obviously the dosage for them would be by weight. But you should find a lyme doc that is experience treating children. What is you locale ? Maybe someone here can help you ?
Posted 6/1/2014 3:05 AM (GMT 0)
I had: arthritis, neck pain, stiff neck, chest pain, confusion, shooting pain, tingling extremities, shooting pains, insomnia, memory problems

My son had: anger, heat intolerance, headache, sinus infection, (chronic), foot pain
Posted 6/1/2014 3:06 AM (GMT 0)
Barngurl,

Richmond, VA. I know. I'm not thrilled with him. but wouldn't he just need to dose by their weight? I don't see what the big deal would be. I'm just lost.

I'll get it together though for their sake. They are two super amazing kids!
Posted 6/1/2014 3:21 AM (GMT 0)
are you all outdoors much ? I def think it can be passed to family close quarters etc.
Are your symptoms same as theirs ?
Posted 6/1/2014 7:12 AM (GMT 0)
Barngurl,

My son has his own unique symptoms. Such as nightmares and anger. My daughter and I are almost the same. even down to losing hair in the same spots. I am still waiting for my results. So I don't even know yet. I can't stand this waiting.

We are outdoors a lot. But now I think I gave it to them (if I'm positive). I traveled extensively before I became ill. Even in Germany where I hear it is common.

:( This sucks! But I know everything will be fine eventually. I have a very strong spirit and determination. No matter what this sickness is!
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