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Dr. L ordered spinal tap for DD to rule out MS and Lyme was tested for as well. I don't think she would routinely do spinal taps for Lyme, however.

Thanks for your response. Do you mind if I ask if your child was treated by her for Lyme? I'm wondering what her protocol is.

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Spinal taps are not the best way to rule out neurological PITAND from Lyme.

 

If you go over to the Lyme forum here, many can help with testing suggestions.

 

Also, if Lyme (and it comes with co-infections) a Lyme Literate Medical Doctor (LLMD) would probably be best.

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My understanding is that Dr L refers patients to another dr for Lyme and that this doctor follows IDSA guidelines, which say chronic lyme doesn't exist. I'm not suggesting Dr L feels this way, but it hasn't been an area she's wanted to get into and unfortunately, the dr. she sent one of my friends to was not someone who was willing to consider long term lyme treatment.

 

Per ILADS (the group that does advocate for long term Lyme treatment) - Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late

disease!

 

If you feel Lyme is worth investigating, there are lyme literate MDs (LLMDs) in the Maryland/DC area who would be better suited to help.

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My understanding is that Dr L refers patients to another dr for Lyme and that this doctor follows IDSA guidelines, which say chronic lyme doesn't exist. I'm not suggesting Dr L feels this way, but it hasn't been an area she's wanted to get into and unfortunately, the dr. she sent one of my friends to was not someone who was willing to consider long term lyme treatment.

 

Per ILADS (the group that does advocate for long term Lyme treatment) - Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late

disease!

 

If you feel Lyme is worth investigating, there are lyme literate MDs (LLMDs) in the Maryland/DC area who would be better suited to help.

 

Thank you.Can anyone recommend LLMD's in Maryland/DC? I haven't been able to locate any. Thanks again for the advice and the help.

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Dr. Jones is a pediatric LLMD and has literally helped THOUSANDS of kids from pretty much every country and state. He is who Dr.B consults with and is also in CT. In D.C. there is Dr. Jemsek with the Jemsek clinic and he is also an LLMD. He does not see anyone himself but his staff works with Lyme and PANDAS kids. Best of luck-

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