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In Desperate Need Of Answers

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Hello, all. I posted in this form about eight or so months ago searching for answers on how to treat my daughter's pandas. Since then, after a very long and hard journey, we have found out she has Neurolyme and multiple coinfections. It seems she regressing neurologically on a daily basis and the oral antibiotics aren't doing anything for her. She responded excellently to ceftriaxone in the past, so I am in desperate search for an LLMD willing to give it to her again. We have been seeing an LLMD for a few months now, but I found him to be dismissive and not willing to hear anything out. My daughter is about to turn 18 and half of her time is spent doing compulsions, the other half she is spacing out, sometimes so bad she can't remember her own name. She is not going to be able to tolerate oral abx until her head is cleared up a little and pyschotropic medicines have an extremely negative effect on her. I am willing to travel overseas if it means getting her the proper Lyme treatment, I just need some recommendations please. I'm aware forms don't allow LLMDs information to be posted, so if anyone could email or personal message me some it would mean a great deal. Please. I am desperate 

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So sorry to hear about your struggles.  It is heartbreaking.

There are plenty of LLMDs in the U.S., but I am in Canada, so don't know them well. 

Some PANS/PANDAS doctors are pediatricians and won't treat at 18 or above - do you still have time to book a PANDAS/PANS doctor if one is closer/more convenient.  They could perhaps also prescribe that abx that worked in the past.


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  • 1 month later...

My son,  soon to turn 18,  is going through the same thing. We believe it to be neurolyme but have not seen a LLMD yet. Do you know of any good LLMDs on the West coast or Southwest? If anyone has any names please PM me. Thanks!

Edited by rhyanen
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