ASPIRE Blog

Elisha Bidwell, LMFT discusses her Parent Regulation Cheat Sheet and how PANS PANDAS caregivers can utilize it. Click to download a printable copy of the Parent Regulation Cheat Sheet Gabriella: […]

“Education is critical to know what is out there. If we can identify cases of Lyme disease early, we can treat them right away. Then we decrease the likelihood of an infection leading to chronic infection and symptoms. We also can bring those numbers down. Awareness and education are really critical; we can actually prevent Lyme and other tick-borne diseases.” Dr. Tom

According to the CDC, Lyme disease is the number one vector-borne illness in the United States. The CDC believes their typical numbers are underestimating the number of Lyme disease cases in any given year by a factor of 10. So what does this mean for you and me? It means that when they’re reporting 30,000 cases, it’s probably more like 300,000 cases per year. When they’re reporting 36,000 cases in a year, their research suggests that it’s more accurately closer to 360,000 new cases. Because this is the case, according to the CDC’s own research, Lyme disease is five to six times more common than HIV AIDS. This is a staggering number.  

I often combine antibiotics with natural products, including different antimicrobial herbs and different tinctures. I look at the evidence we have; we’re in an evidence-based medical culture, yet we keep using these old school treatments.

Do I have patients with Lyme triggered PANS?  Do I have patients whose Lyme does not trigger PANS symptoms but does exacerbate the severity of pre-existing conditions or make it more difficult to recover and get back to their baseline?

In terms of neuropsychiatric symptoms, there are case reports in the medical literature, showing kids who have a PANS presentation who received immunomodulatory treatment, steroids, psychiatric medications and did not get better. Then they test for Bartonella, the test is positive and they treat appropriately, and the child returns to baseline after a year and half of being in a flare.

Bartonella can cause symptoms that look like autoimmune encephalitis or PANS without actually triggering autoimmune encephalitis and it can also trigger autoimmune encephalitis.

Chan, A., Karpel, H., Spartz, E. et al. Hypoferritinemia and iron deficiency in youth with pediatric acute-onset neuropsychiatric syndrome. Pediatr Res 89, 1477–1484 (2021). https://doi.org/10.1038/s41390-020-1103-3 Conclusion: Hypoferritinemia and iron deficiency […]

What a year! Thank you for being a part of ASPIRE’s first year. We believe in the power of WE; it takes an entire community to fight for better outcomes for those affected by PANS/PANDAS.

ASPIRE is happy to announce that New England Center for Health, lead by Dr. Nancy O’Hara (ASPIRE Professional Advisory Board Member), Dr. Lindsey Wells, and Vicki Kobliner will host zoom calls regarding various topics surrounding COVID-19. 

Alexandra B Maulden, Aris C Garro, Fran Balamuth, Michael N Levas, Jonathan E Bennett, Desiree N Neville, John A Branda, Lise E Nigrovic, for Pedi Lyme Net, Two-Tier Lyme Disease […]

Do you remember the day your child officially got a diagnosis of PANS/PANDAS? Was it your first doctor? Was it your fifth? Were you devastated? Were you relieved to have an answer and the start of a treatment plan? Was your child diagnosed incorrectly prior to that? Email us at ASPIRE us your Diagnosis Day Story.  Or submit your full Personal or Family PANS PANDAS Story.

Dr. Swedo briefly explains the importance of this research and its results. 

The Frontiers article is an important replication and extension of previous work by Dr. Madeleine Cunningham and her colleagues. The investigation reports results of assays done on samples obtained from 60 PANDAS patients, 8 children with Sydenham chorea, and 2 “control” groups — children with other psychiatric/neurologic disorders (25 with OCD, 18 with attention deficit hyperactivity disorder (ADHD) and 18 with Tourette disorder), and 28 healthy controls.