My Journey with PANDAS: How I Stopped Taking Meds and Started Eating Right

My Journey with PANDAS: How I Stopped Taking Meds and Started Eating Right

As a PANDAS kid, 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. But I’m here to tell you that there is hope.

While I used to be ashamed or afraid to share my experience with others, I’ve recently found it is actually quite freeing and helpful to be open about my adventure in life. Being open has helped me manage expectations of myself and reduced my overall stress levels. What’s more, sharing my story has led me to a place where I am able to assist other people along their own personal journey.

So here it goes.

When I was thirteen I became completely disabled by PANDAS. Almost overnight, I went from being “normal” to a child who was constantly tic-ing, struggling with anxiety, mood swings, and anger to the point where I would break things and put holes in the walls of my parents’ house. I was self-destructive and my relationships with others began to suffer. Nobody had any answers and for years I let my disability get the best of me. I felt very much alone.

Fast-forward 15 years, and today I am a functional husband, father of three beautiful girls, and a business owner with minimal tics and anxiety. I enjoy fly fishing, motorcycles, and flying airplanes, and I take ZERO prescription meds. My company sponsors an annual 5K fundraiser for PANS/PANDAS awareness and advocacy and I’ve been able to reach out into the lives of countless adults and children. I can’t say that my life turned out perfect, but it’s got to be pretty close. So what changed?

I'll be honest, the medicines and conventional treatments we initially looked to never gave me the relief I was hoping for. Most medications and procedures did nothing at all, and the side effects often outweighed any benefits. I share the familiar story of visiting every specialist on the East Coast and trying every treatment option that was available to me, from off-label prescription meds to long-term antibiotics to acupuncture. Nothing worked.

If there's one thing I've learned in this 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. So after more than ten years of searching for answers and struggling to cope with the “physician fatigue” that accompanies weekly doctor visits, I finally decided to take my health into my own hands. I took a low-paying job working in sustainable agriculture where I learned the basics of functional health. I got rid of all social media accounts and minimized my exposure to “triggers” such as electronic device use. During that time I discovered CBD oil, and for the first time in my life, I saw relief.

I see a lot of discussion about diet supplementation and CBD oil in the Pans/Pandas/encephalopathy community. It turns out, CBD Isolate (CBD oil that contains zero THC) is highly effective in reducing inflammation and anxiety— a double edged sword for autoimmune/neuro disorders and many other health issues. CBD provided me the relief I needed in order to focus on holistic practices that I was incapable of advancing in beforehand, such as cognitive behavioral therapies, breathing exercises, weight lifting, reading, prayer, etc. all without side effects. It became a miracle in my life that helped me along my journey to become functional again at a point where I was almost ready to give up.

Without a doubt, the most important skill I learned along my journey is how to 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 that can help you get started.

It’s also important to 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. Over the last two years I have gained more than 40 pounds of muscle mass and my tics are at an all-time low. According to my physician, the more muscle mass I build, the lower my eosinophil titers become, the better I feel (and look).

With regards to diet, I firmly believe that the food we eat is our body's primary medicine. No amount of medication can replace the nutrition that we absorb through consuming a healthy diet. One of my favorite physicians put it this way— “there is not one disease or condition that cannot be treated using diet and lifestyle and in some cases, they are the only therapies that can.” Eliminating sugar and eating a nutrient-rich, high-protein diet completely changed my lifestyle, elevated my mood, balanced my energy levels, and helped to reduce the frequency and severity of my tics. Conventional medicine can be helpful and has its place, but if you find yourself focusing more on pills and procedures than diet and exercise, I’d suggest it’s time to rethink your strategy.

Finally, get involved. Find a community of people who can help each other. Experts estimate that 1 in 200 children suffer from PANDAS. You don’t have to fight this battle alone. Humans have always found strength in numbers by working together towards a common purpose.

Here’s what a typical day looks like for me…

6am: wake up Breakfast: fresh ground beef with roasted sweet potatoes & onions. Topped with 2 fried eggs and sliced avocado. 2-3 glasses of water or herbal tea with lemon. I prefer to start my day outside and enjoy my first meal of the day in the sunshine.

7am: reading and group bible study

8-10am: deep work and self-care

11am-12pm: weight lifting or high endurance exercise Lunch: egg/chicken salad or grilled chicken and rice with a side of roasted squash or root vegetables (seasonal options).

1-5pm: stay busy. Fill your day with the things you love most. 

Dinner: 1 lb steak, pork chops, chicken, or Alaskan fish with heaping portions of cruciferous vegetables and seasoned rice or beans.

Dessert: seared beef liver with maple syrup or raw honey. Trust me, it’s delicious  :)

10pm: bedtime

Living with PANDAS is a daily struggle that has significant implications in many areas of my life and the lives of my family members. I’ll never be the “normal kid” that I used to think I wanted to be. Ironically, the life skills and habits I learned from managing PANDAS symptoms over the last fifteen plus years has transformed my biggest weakness into some of my biggest strengths- empathy, faith, patience, and perseverance. For that, I am thankful.

I hope my writing helps to offer some hope to those who are currently struggling to find an answer in life. Don’t give up hope. Stay positive. Practice CBT, deep breathing, and meditation. There are many things you can do to improve your quality of life. Sometimes I find it best to simply step back from our circumstances and just be thankful for each day we have been given. If you would like more information about my journey and what has worked for me, please reach out

Ethan

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