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Lyme Disease
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Posted 6/5/2009 10:43 AM (GMT -7)
Okay, so FINALLY I got someone to speak with me from the genetics in pediatrics. We took my 3 1/2 year old in for testing to try to discover why he has myoclonic seizures and other issues. I wanted to know if they had tested for anything immuno related like ANA. They had not. All his tests were normal except for his IGG was a little low. They said it was a 433. I'm curious if that means anything to anyone concerning lyme. I am really starting to think he might have lyme disease. I am going to ask his neurologist to refer us to a rheumotolgist for him. Anyone know anything about IGG tests?
Posted 6/5/2009 11:03 AM (GMT -7)
My son is quite a bit older, 24, but he has low IgG. His LLMD sent us to an immunologist who ran a lot of tests and then told us that they didn't believe in chronic Lyme and Dan didn't exactly fit the criteria for someone with low IgG in that he hadn't had a lot of infections ie. sinus, ear infections, bronchial problems, but they would go out on a limb and give him a trial of 6 mos of immunoglobulins. It's called Viva Globin. He's been on it almost 2 mos. and we are seeing some improvements in his fatigue and cognitive functioning. His seizures and myoclonic jerks are only slightly under better control. They come almost on schedule - every 3 weeks. They told us that it would be a slow process and it is, but as I said there is some improvement.

I know other people who have low IgG and have gone on either IVIG or Viva Globin and have seen real improvements. So we are very hopeful.

I hope this helps you in some way.
TAke Care,
Karen
Posted 6/5/2009 11:13 AM (GMT -7)
My son hasn't really had a lot of infections either. Most of his symptoms are cognitive. He was having probably 50 or more myoclonic seizures a day before he began taking Keppra. It seems to control them but he still has abnormal EEGs showing epileptic discharge. He has sensory issues. He responds negatively to increased passion in voices. Yelling, talking passionately, sometimes singing. He also displays some OCD. For example, one time I found him in his room. He had taken all his books and made rows of them and made sure that each one was turned over on its back lined up straight. He has a lot of autistic behavior including behavioral problems, violent outbursts. However, he is very social, affectionate, and will play with other children and toys. It's baffling really. Thank you for your comment. I will be taking him to see a Rheumotologist soon.
Posted 6/5/2009 8:11 PM (GMT -7)
Debbie, I'm so sorry! My only contribution here is to say, that in spite of how difficult it is to do, I would think the Drs should do all they can to at least rule Lyme OUT, wouldn't you?
Posted 6/5/2009 8:37 PM (GMT -7)
Sounds like lyme rage not an autistic symptom. but alot of people believe that alot of autistics are really lyme patients. i believe this is lyme please read karen forschners story get a western blot go to a lyme doc noone else will believe in it. email stephanie@turnthecorner.org tell her the area you need a lyme doc she will email you back one nearest u. get treatment. make sure the lyme doc uses the igenex lab in california you wont get a good test w any other type of test. serrologic blood tests show u nothing and you wont get any other doc to give u a western blot but a lyme doc please do it for the baby i am so passionate. when i look at my daughter i hear your story and i think of her so im on edge when children are concerned
Posted 6/7/2009 11:13 AM (GMT -7)
bumping
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