ASPIRE Blog

This story exemplifies how it is sometimes hard to see the sudden onset or sudden worsening of PANS PANDAS symptoms as you are living (struggling) through it. Remember, someone with PANS PANDAS does not need to be 100% free of all symptoms, behaviors, delays, etc. before onset; symptoms can pile up. The boy featured in this story had several challenges prior to diagnosis. Hence, as his parents, providers, and educators kept trying new therapies, seeing gains then seeing the loss of those gains, it was hard to see the big picture and identify those periods of sudden onset and sudden worsening of symptoms. It was not until medical issues in his sibling were identified, including Bartonella, strep, and mycoplasma, was PANS PANDAS considered. Then the pieces fell into place, and it was easier to see when he had hit walls – i.e., when he had periods of regression and sudden worsening of behaviors.

Nykytyuk S, Boyarchuk O, Klymnyuk S, Levenets S. The Jarisch-Herxheimer reaction associated with doxycycline in a patient with Lyme arthritis. Reumatologia. 2020;58(5):335-338. doi: 10.5114/reum.2020.99143. Epub 2020 Oct 3. PMID: 33227092; […]

Shields GS, Spahr CM, Slavich GM. Psychosocial Interventions and Immune System Function: A Systematic Review and Meta-analysis of Randomized Clinical Trials. JAMA Psychiatry. 2020 Oct 1;77(10):1031-1043. doi: 10.1001/jamapsychiatry.2020.0431. PMID: 32492090; […]

Lyme disease research study enrolling now.

Study To Compare The Effect of Panzyga Versus Placebo in Patients With Pediatric Acute-onset Neuropsychiatric Syndrome. This will be a double blind placebo study of IVIG for PANS/PANDAS.

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 […]