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Sheila

New: Study Debunks Lyme Disease-Autism Link

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A new study failed to find any evidence to back up a suggested association between Lyme disease and autism spectrum disorders. Although a prevalence of Lyme disease as high as 20 percent (or even higher) has been reported in children with autism, the new research found no cases of Lyme disease in children when testing recommended by the U.S. Centers for Disease Control and Prevention was done.


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I don't have an opinion on whether or not there is a link regarding Autism and Lyme, but I do want to comment on the testing that was used for this study. The 2-tier standard serology used to detect Lyme disease is inadequate. Step 1, the ELISA test, is worthless in my opinion. And then, only if found positive on the ELISA, do they move forward with the Western Blot. Standard tests fail to properly diagnose over half of Lyme disease.

 

My daughter who has PANS (lyme, bartonella, pandas), has never tested positive through this 2-tier serology. She has tested positive though a different lab's western blot, and more recently through a culture by Advanced Lab. They sent us a picture of the spirochetes in her blood indicating an active infection. But again, negative through standard serology.

Edited by philamom

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I don't have an opinion on whether or not there is a link regarding Autism and Lyme, but I do want to comment on the testing that was used for this study. The 2-tier standard serology used to detect Lyme disease is inadequate. Step 1, the ELISA test, is worthless in my opinion. And then, only if found positive on the ELISA, do they move forward with the Western Blot. Standard tests fail to properly diagnose over half of Lyme disease.

 

My daughter who has PANS (lyme, bartonella, pandas), has never tested positive through this 2-tier serology. She has tested positive though a different lab's western blot, and more recently through a culture by Advanced Lab. They sent us a picture of the spirochetes in her blood indicating an active infection. But again, negative through standard serology.

I completely agree with Philamom. Personally, I think this all goes back to lets just be scared of using abx, and prescribe psychotropics instead, AND lets just have 1 in 50 kids diagnosed with an "incurable" disorder that totally disrupts an entire family (incidentally that number was 1 in 144 just 5 years ago). I know multiple children who were diagnosed with Autism who turned out to have PANS (one infection or another plus other biomedical triggers.) I don't put one bit of credibility in this article. My DH was the only one in my family who tested positive for Lyme, but both my children and I also turned out to have it, and responded to the "dreaded" abx therapy.

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I agree with both of the above. My daughter was negative on the first tier. We ran a western blot for the LLMD and it came back IND for lyme specific bands and positive for bartonella. Treatment with abx has resulted in withdrawl of her Aspergers diagnosis.

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Did you all notice the title? "signs of lyme disease"

 

OK...that's possible...only about 30% have any clear physical signs (like a rash), anyway. But, if you consider difficulty speaking, joint pain, and more, then maybe there are signs, but ones that the researchers in this case just conveniently decided to overlook.

 

Personally, I find it very interesting that they mention that 20% or more kids do have an association.

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Can I ask a crazy question? How is the Lyme being contracted? Isn' t lyme contracted via ticks? Just asking because i have not tested my DS for lyme because he has never had a tick as far as I know but wondering if i could be missing the boat with this.

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In the case of Lyme and autism, it is believed to be congenital Lyme. If the mother has Lyme and isn't aware of it, she can pass it to her baby in utero. This is what we believed happened with my ds. If she's not on antibiotics, you can run a Lyme culture through Advanced Labs and co-infection tests through Igenex Lab.

 

Also, for anyone who suspects Lyme, having seen a tick or a rash is not a criteria. Many people never see either. Ticks are extremely small and if they embed in your scalp, behind an ear or knee or on your back or neck, they're easy to miss. Many people never develop the rash at all.

 

If you want to look into this more, post on the PANDAS/PANS (Lyme Included) forum - many folks on there know a lot about Lyme and co-infections and some are dealing with autism.

 

Also, here's a good website: http://www.lymeinducedautism.com/

Can I ask a crazy question? How is the Lyme being contracted? Isn' t lyme contracted via ticks? Just asking because i have not tested my DS for lyme because he has never had a tick as far as I know but wondering if i could be missing the boat with this.

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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