I originally contracted it when I was a kid and since then i've never had another strep infection I believe, but the severity of the symptoms comes and goes sporadically. I started seeing a therapist for it and it's really helped in trying to stop flare ups in their tracks and now I just have some basic OCD symptoms, like I still have to eat and drink things in sets of fours. Do you know if treatment can help revert some other symptoms, like the issues surrounding sensory problems?
I’m glad you’ve managed to get some relief from your symptoms. My son doesn’t have too many symptoms now either but the OCD is the lingering thing that seems to be hardest to get rid of. We’ve found the biggest improvements from NLP (Neuro Linguistic Programming) and EMDR (Eye Movement Desensitization and Reprocessing), rather than just traditional CBT which didn’t seem to do much.
My son used to have really bad sensory issues. Couldn’t touch paper and therefore lost the ability to write and couldn’t read books. He couldn’t stand the feel of his clothes and couldn’t take it if someone touched him. I read somewhere that heavy metal accumulation in the body can cause these types of problems so we’ve been doing chelation (getting the metals out) using the Andrew Cutler method and all these problems disappeared over the course of about 9 months. It might be something to look into because chelation is cheap and easy and you don’t need a doctor (in fact my doctor told me to do it on my own without her). You just need to make sure you have no mercury/amalgam filings in your teeth before you start (or get them removed if you do).
Other things to look at if you want to dive deep are mold illness (mold exposure causes inflammation which can cause flare ups so make sure you don’t have mold in your home/work/school), Lyme disease (and other co-infections such as Bartonella, Babesia), gluten-free/dairy-free diet (gluten and dairy can cause inflammation in PANDAS people), other infections such as mycoplasma, gut health (leaky gut = brain inflammation), natural anti-inflammatories (e.g. turmeric) and vitamin C therapy. If you want to see a PANDAS specialist prepare to pay thousands of dollars that are not covered by insurance. They may recommend long-term antibiotics or IVIG. We haven’t gone that route but instead found a mold illness specialist who also treats Lyme and has helped us with supplements, herbs, and homeopathy.
There are many things you can do to help this condition. It’s never too late to treat it. I hope you find some of this helpful and I wish you all the best on your healing journey! xxx