If you're reading this, you probably have a loved one with PANS/PANDAS and are looking for answers. I'm here to tell you that there is hope. As a PANDAS kid myself, I know what a journey it is to have my life interrupted, to be repeatedly misdiagnosed and mistreated, and to ultimately find a solution for my tics, compulsions, and other symptoms. It is a long road full of mountains and valleys, and for many, a lifelong journey for peace.
PANDAS involves bacteria, viruses, histamines, proteins, and more. Diagnosis is characterized by an often abrupt, dramatic onset or recurrence of tics, OCD, and other symptoms. Literally, these symptoms come out of nowhere and often develop overnight! It takes a lot of work and a lot of changes to make things improve. Whenever I post about how great things are going, I often get hit with an unexpected roadblock and have to battle my way back. But since I always get back, I want everyone to know what I've done to get better.
If there's one thing I've learned from my journey, it's that 95% of the time, you cannot do just one thing and expect everything to get better. Healing from PANDAS is all about making holistic lifestyle changes that work for you. Thanks to many years of research, advocacy, and awareness initiatives, treatment for PANDAS has become much more straightforward. I hope this guide helps you along your decision making path toward healing!
Here's how you can get started:
- Treat the infection. When exposed to strep, at least 30 days of heavy antibiotics may be used to kill the pathogen. Lyme, yeast, mold, or other bacterial or parasitic causes may require alternative treatment options. You can't begin to heal until you've removed the problem. That is why the first step should always be to treat the infection. When identifying the source of infection, it's important to note that the strep test your doctor is giving is not entirely accurate. Strep bacteria may be in the nose, throat, anus, gut, skin, or any number of places your doctor is not swabbing. If you have symptoms, you have a problem that needs to be treated.
- Address the inflammation. Take natural anti-inflammatories such as CBD oil, quercetin, vitamins D and A, N-acetyl-L-cysteine (NAC), zinc, magnesium, fish oil, and curcumin (turmeric). Ibuprofen may also be used to address periodic flare-ups, but be careful about I do not recommend taking it daily. Personally, CBD has made a big difference in my life because not only does it have anti-inflammatory properties, but it has also been shown to decrease OCD and anxiety. Some studies also suggest CBD can enhance the effects of exposure therapy—which assists patients in dissociating certain cues with a fear response—and cognitive behavioral therapy. I know this sounds like a tremendous amount of pills but I can honestly say that I've noticed a difference since making them a part of my daily regimen. This is doable!
- Eat a nutrient-rich, anti-inflammatory diet. I focus on high protein foods and cruciferous vegetables. Eliminate sugar and alcohol consumption. Shop local when possible and eat bone broth, fermented foods, fruit oils and animal fats (olive oil, coconut oil, avacado oil, butter, lard) and avoid industrial seed oils. More recently, I have discovered the GAPS diet, which essentially covers all of the dietary guidelines I've adhered to for the last several years.
- Utilize antimicrobial herbs. These may include berberine, (Hydrastis Canadensis), neem (Azadirachta indica), oleuropein (olive leaf extract), oil of oregano (Origanum vulgare), garlic (Allium Sativum), beard moss (Usnea barbata), medicinal mushrooms (Cordyceps Sinensis), and colloidal silver.
- Exercise daily. Strength training and weight lifting in particular have made a big impact on my overall health. Anaerobic exercise is critical for maintaining a healthy appetite, deep sleep, and daily energy levels. Weight lifting helps me to eat better, sleep better, and feel more confident. Physiologically, muscle mass acts as a sink for the proteins, eosinophils, and histamines that cause the inflammatory response exhibited by people with PANDAS. According to my physician, the more muscle mass I build, the lower my eosinophil titers become, the better I feel (and look).
- Minimize triggers. Wherever possible, try to eliminate sources of anxiety. If something bothers you or your child, get rid of it. Learn deep breathing exercises and practice CBT (cognitive behavioral therapy) daily to re-train the brain how to react to interruptive external stimuli that can't be avoided. CBT can help you make sense of overwhelming problems by breaking them down into smaller parts. Start with the least severe tics/compulsions, and work up to the most severe as you get the hang of it. It’s good to work with a therapist to master the basics of CBT, but your goal should be to learn how to practice it on your own. NHS published a good introduction to CBT to help you get started.
- Get involved. Find a community of people who can help each other. You don't have to fight this battle alone. Experts estimate that 1 in 200 children suffer from PANDAS. Humans have always found strength in numbers by working together towards a common purpose. There are a number of PANS/PANDAS groups on facebook- I recommend PANS/PANDAS Virginia even if you don't live in the area.
Please understand that moderate to severe cases may require additional treatment options, but this post is intended to help you get started on your journey toward healing. I recommend reading Dr. O'Hara's book, Demystifying PANS/PANDAS to learn more about the specific treatment options that are available.
Other important resources:
Disclaimer: The content of this post is provided for informational purposes only. It is in no way intended as medical advice, a substitute for medical counseling, or as a treatment or cure for any disease or health condition. Always work with a qualified health professional when considering treatment options.