AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.
Vivek is a pioneering presence in the autoimmune community. Not only is he one of the few men to have grown up with a diagnosed autoimmune disease, but he’s also using his experience to design an app that will connect the community in an entirely new way.
What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?
My health issues are primarily related to Hashimoto’s/IBS. They began when I was around 7 or 8 years old and it took me until age 12 to at least get a hypothyroidism diagnosis and until 21 to really recognize the severity of my health situation. I suffered from immense fatigue, daily migraines, chronic constipation, hemorrhoids, joint pain and more.
Describe what the lowest point on your health journey was like.
I was under tremendous stress my senior year of college. I was interviewing for jobs, studying for school, and working. I was waking up day after day, completely unrested, feeling exhausted throughout the day as I tried to work. I was in pain when I ate, I was in pain whenever I went to the bathroom, and I had a massive migraine by the end of the day when I tried to go to sleep. I woke up one day and was just so sick of it, and finally recognized that this couldn’t possibly be normal.
What challenges influenced you to look for a solution? Basically, what was the tipping point?
The symptoms that really pushed me were the fatigue, the digestive symptoms, and the pain. The tipping point was when I realized I didn’t want to wake up one more day feeling like this. I wanted to die.
When you found a protocol to help you heal, what was it and what was your first indication that it was working?
I had many small successes with diet, sleep, stress management, and more, but the first really huge success was an experiment to try to manipulate my microbiome with a giant bomb of probiotics and prebiotics. It was risky, but I was desperate. By some miracle, it worked the first time, and I had a complete remission of most of my symptoms within days. I felt alive and happy for the first time since my childhood.
For various reasons, I stopped the experiment after two weeks, and was never able to duplicate it. I learned two valuable lessons from it. The first lesson I learned was that it was possible for me to feel healthy, and that such a change could potentially happen quite rapidly. The second lesson I learned was that a simple input/output view was wildly inaccurate when working with the body. The fact that the same supplement can have a radically different effect on the same person when taken the first time versus the second was a huge revelation to me. It seems obvious in hindsight, but I was just beginning this health journey at that time. These two lessons were critical to how I approached my health from then on.
What resources have you used on your healing journey so far and how did you find them?
Books (shoutout to Dr. Izabella Wentz for helping me realize that I could change my health), reading papers online, articles written by many gifted and educated people (Dr. Ray Peat holds a special place in my heart), and of course, the online chronic illness community who provide tremendous amounts of support and knowledge. I don’t follow any protocol or school of thought, but everything I have come across has shaped my view and model of chronic illness in some way.
The most important resource for me has been my engineering and computer science background and mindset. Throughout the process of searching for answers, I constructed an engineering model of how the human body works, and used that to run my “experiments”. With the help of a brilliant friend, everything came together, and I am now mostly symptom free and continuing to improve at a rapid pace.
Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?
Yes, too many to count. The final straw was when I had a doctor forcefully insist that I take an SSRI for depression and anxiety and ignore anything I said about it being related to the rest of my symptoms. I didn’t just want to “feel” better, I wanted to “be” better, so that’s when I started looking on my own.
It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?
I love the chronic illness community. I see so many people working hard to improve their health. I see how much compassion everyone has for others, because we all know what suffering feels like. I’ve been building a platform with a small team of talented and dedicated people to help the community work together to heal using the power of technology and aggregate data. Developing this platform is my passion, and I know through working together, we can make an enormous impact on chronic illness.
We’re called Autoimmune Citizen Science and we’re running a crowdfunding campaign to help turn our vision into reality. Our platform will always be free for use, but if you can help us now, we’ll be able to build it better and faster. Check out our indiegogo page if you’d like to contribute!
Seriously guys, Autoimmune Citizen Science is amazing! Once complete, their app will allow users to both submit and track their personal symptom data, but also view and learn from that of fellow users. We want to see these guys succeed and they’re so close to their funding goal! Click here to learn more and contribute!