Report Anyone dealing with PANS and Lyme? in PANS / PANDAS (Lyme included) Posted July 17, 2016 Welcome. There are many, many PANS kids who've battled Lyme and you can search the forum for older discussions - many from the '09-'11 time frame. Te members on this forum are the ones who eventually convinced Swedo et al that Lyme can be as much of a trigger as strep and this led to the acknowledgement of PANS. There is a research paper from Dec '15 that shows how Pandas and Pans happens - the body gets infected by a bacteria that provokes the immune system to create antibodies called Th17 cells. Immune cells are often their most active in parts of the body that are meant as "front lines of defense" - e.g. the gut lining, the skin, the sinuses, the lungs - places that are most exposed to outside invaders. Th17 cells that are in the sinuses can migrate up the sinus tissues and into the olfactory bulb. In Pandas/Pans, these Th17 cells are able to cross thru a bony structure at the top of the olfactory bulb called the cribiform plate and then cross over the blood-brain barrier. Once on the wrong side of the BBB, the Th17 cells are treated as invaders and trigger an autoimmune attack and inflammation, causing Pans symptoms. The paper is here - http://www.jci.org/articles/view/80792 Lyme is one of the bacteria that triggers Th17 antibodies. So your question about what to treat first is that you've got to manage the inflammation while treating the infection(s). But the inflammation isn't going to go away until 1) the infection is cleared and 2) the BBB is closed. Here's a good article about what may cause tics - http://www.haaretz.com/israel-news/science/.premium-1.730584?v=B3F0645CBADA2097AD188921173B405B It looks like the article has been restricted but you may be able to find it elsewhere by searching on the author. In the paper, it talks about tics being caused when a portion of the basal ganglia gets overwhelmed with signals and mis-fires due to the inability to process all the signals efficiently. Reduce inflammation and the tics go away. So if your son's tics are still present, it doesn't mean the Lyme isn't being treated. It just means you have a whole lot of inflammation going on in that part of the brain. 40 days is unfortunately just the start of treatment. My son was on multiple antibiotics (up to 4 different ones at once) for 2.5 yrs. He was a big ticcer and we found out that it wasn't just strep and Lyme that could cause his tics, but also mold (which was in his school building) and high mold counts in the environment (spring and fall). The good news is that after 2.5 yrs of treating Pandas with tonsillectomy, steroids, plasmapheresis and IVIG - which helped but not completely - he was correctly diagnosed with Lyme. With 1.5 yrs of heavy Lyme antibiotics and then 1 yr of antibiotics plus mold focus, he was totally healed and has been off all medications for 3 years. He went from being extremely hindered - physically and academically - to being very healthy and academically strong. He hasn't had a Pandas flare (from strep or anything else) in 1.5 yrs. He's 14 now - showed his first Pandas signs at 3 and was diagnosed at age 6. Healed at age 11. It is a long battle. You will learn a lot about many integrative and alternative approaches. Some will work and some won't. But don't lose hope. Kids can heal and move beyond - often much faster than their mothers can! As my son recovered, my younger daughter went from "iffy" Pans to full-blown Pans. Her issues have been predominately mold and sinus infections (staph) - no Lyme. She's allergic to most antibiotics, so we've found great success with herbal antibiotics and anti-inflammatories. If this resonates with you, let me know and I'll share more about the things that helped.