momto8 Posted September 28, 2015 Report Share Posted September 28, 2015 Hello- My 4 year old was treated for Lyme this spring. She did not have a true positive, but she had 2 markers on the test that the Dr considers a positive. My husband began noticing her making a sluping noise maybe a month back. Then this last Wednesday she began rolling her eyes upwards and sometimes jerking her head up. It is very alarming. Does this sound like PANDAS? or something like it? Link to comment Share on other sites More sharing options...
msimon3 Posted September 28, 2015 Report Share Posted September 28, 2015 Lyme disease can manifest in this way as well. It is called neuroborreliosis when Borrelia infects the nervous system, and tics can develop as a result. Some antibiotics have poor penetration into the central nervous system, so you may want to schedule another appointment with your doctor and get an antibiotic appropriate for a 4yo with good CNS penetration and good efficacy against Borrelia. This resource might be helpful: http://www.ilads.org/lyme/ILADS_Guidelines.pdf Modern research shows that Borrelia can be resistant to treatment, so extended antibiotic therapy may be necessary. If you doctor doesn't 'believe in chronic lyme disease' then you need to research this issue for yourself and perhaps find another doctor if necessary. Link to comment Share on other sites More sharing options...
rowingmom Posted September 28, 2015 Report Share Posted September 28, 2015 (edited) If you haven't had her tested for coinfections, I would do that. Lyme treatment won't necessarily treat the coinfections. DD13's ticcing was significantly correlated to the amount of bartonella die-off toxins produced during her treatment. Treatment for babesia produced herxing, but no ticcing. The ticcing you are seeing now may be due to her immune system producing the die-off. When I first approached our LLMD about PANS/PANDAS symptoms, she told me that bartonella infection was the cause and that by treating bartonella we would find resolution. We have. Edited September 28, 2015 by rowingmom Link to comment Share on other sites More sharing options...
momto8 Posted September 29, 2015 Author Report Share Posted September 29, 2015 We saw the dr today. He is very chronic lyme friendly, as we live in a really bad area for lyme. He was concerned enough about her to tell us we need to see someone else, and will be getting back to me today when he finds out who she should see next. He did blood work, so I will take notes on what you have said here and ask him about that if it is not on the typical blood work radar. He knew about PANDAS and thought that could be a real possibility, though he had never seen a case yet. Link to comment Share on other sites More sharing options...
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