If you’re just beginning to suspect that you or your child has PANDAS/PANS or Lyme, it can be difficult to find support as well as accurate information about the disorder. If you’re not sure where to start, I suggest my page:
Additionally, on this page here, I’ve assembled a list of some of the most useful links I’ve come across.
PANDAS Network – PANDAS Information
National Institute of Mental Health – Information About PANDAS
Moleculera Labs – PANDAS And PANS – Overview
Lymedisease.org – Lyme Basics
Dr. Latimer, video: “PANDAS: One Size Does Not Fit All”
Find a Doctor
PANDAS Network: Leading PANDAS Physicians
If you think you or your child might have PANS or PANDAS, it’s very important that you find a doctor who knows how to treat it. With many doctors, if you bring up the subject, they will simply tell you that PANDAS is “controversial and not well understood,” and they will send you on your way. Some doctors may feel threatened by the idea that some cases of mental illness can be cured with immune-based treatment. It’s true that there isn’t enough research on the disease, but there are treatments available today that have helped many people. The doctors in the link above are considered experts in the condition.
LymeDisease.org: Lyme Disease Physician Referral
There’s a lot of confusion and conflicting advice about Lyme disease (especially chronic Lyme) within the medical community. A lot of doctors believe that three weeks of antibiotics always eradicate the infection, but many of us still have symptoms after this. Therefore, it’s important to find doctors who are informed and experienced in treating chronic/late-stage Lyme disease and its co-infections.
Blogs about PANS/PANDAS
This blog is written by a 27-year-old with PANS and severe OCD and describes her journey to recovery after years of struggling with mental illness and being undiagnosed.
Written by a 16-year-old girl living with PANDAS and Lyme, this was the first blog besides mine that I found written from the perspective of a PANDAS patient.
Written by a mom of a boy with PANDAS, PANDAS Sucks is a great blog about dealing with the disorder from the parents’ perspective. She also regularly has guest posters and invites readers to share why they think PANDAS sucks.
Perhaps one of the oldest blogs about life with PANS, PANS Life is written by the mom of two children with PANS and Lyme. It provides a true glimpse of what life can be like in a PANDAS/PANS family, and it links to many great resources as well.
Written by the mother of two kids with Lyme and PANS, one of whom also has an autism diagnosis, this blog chronicles the family’s healing journey through PANS and Lyme after years of misdiagnosis.
The PANDAS Puzzle is written by the mother of a six-year-old with PANDAS and Lyme. The site not only shares the journey of the family through solving the puzzle that is PANDAS, but the author also posts healthy, kid-friendly recipes.
Other Useful Sites
Too many people run into insurance issues at some point. This is the best page I’ve come across breaking down how to handle denials and related issues.
A charity founded by a patient and for patients, Empowered Hands for PANS provides care packages and support for children receiving IVIG treatment.
If there are no PANDAS support groups in your area, this is a great place to meet others dealing with the disorder and share information.
Although PANDAS and PANS are not yet accepted by mainstream doctors as a form of Autoimmune Encephalitis, PANDAS experts do consider the conditions to be related, and PANS and AE often use the same treatments. The AE Alliance site provides information about treatments as well as useful publications and support resources.
CLDN raises awareness for the growing problem of Lyme disease in children. The site provides a lot of great information about Lyme disease and PANS, and their impact on children and families.
As important as it is to treat the underlying cause of PANDAS/PANS, it is also crucial to address the OCD symptoms directly through CBT and perhaps other therapies. Learn more about Obsessive-Compulsive Disorder here.
Eating disorders are often one of the main symptoms of PANS. While medical treatment to address the autoimmune cause of PANS eating disorders is essential, NEDA provides resources and support for families for dealing with symptoms in the meantime.
Know of any other good resources that I’ve missed? Visit my contact page and let me know!