LymeLight Foundation Grant Recipient, Ryan

Ryan – Uncovering the Truth

During my junior year at Oregon State University in 2021, I started having jaw soreness. I didn’t think much of it at first, but every time I spoke with someone or ate a meal, the soreness got progressively more intense. Eventually, it was so irritating that I changed my diet. I got a bite plate to wear at night that almost totally eliminated my symptoms in a week. Weeks later, I started developing serious and constant irritation in my pelvis. This time, however, there was no explanation.

By summertime, my hands developed problems and then my foot. It felt like the world was hitting me with everything it had all at once. I couldn’t walk, I couldn’t play guitar or videogames, and I definitely couldn’t work. I went through many cycles of hope, despair, boredom, joy, confusion, and relief.

I tried physical therapy, but the benefits didn’t last very long. Constant setbacks eventually turned into an overall decline despite my efforts. I was unable to complete basic tasks by the end of my fall term, so I took a break from school to recover at home. Eventually, I lost pretty much all mobility and spent most of my time in a chair in my living room.

While at home, I consulted orthopedists, general physicians, rheumatologists, urologists, chiropractors, massage therapists, acupuncturists, pretty much anyone with a medical degree or license who would take a swing at cracking the code of my diagnosis. Eventually, I found a naturopath who tested me for Lyme disease. The results back positive, so we figured that was the best guess at getting me healthy.

I was treated for Lyme from February of 2022 to May of 2023. I worked with two different naturopaths and tried rigorous antibiotic, disulfiram, methylene blue, and natural treatments. I was also fortunate enough to receive two grants from LymeLight during the period of my treatment.

In the beginning, when my family and I would look at the prices of appointments, supplements, and treatments, we were scared whether we would be able to afford this kind of treatment. Luckily, my first naturopath knew about LymeLight and helped me apply. Receiving the grant was a HUGE deal. We were able to afford doing some diagnostic tests that otherwise would have been too spendy for us. Because of this, we were able to rule a lot of things out and focus on what we thought was the best path.

After over a year of treatment for Lyme, my body was weak and atrophied. The treatments still weren’t helping, so I slowly got off the antibiotics and looked for alternative explanations. I started seeing doctors at a pain clinic and met with a therapist. This therapist worked for a clinic that helped people dealing with “mind body syndrome”. This is the idea that our minds can sometimes misinterpret healthy signals from different parts of our body and this can result in strange physical and sensory manifestations. I wasn’t sure about it at first, but after a few months, I was convinced that I had more paths forward than I had originally thought.

At the pain clinic, I felt very understood and listened to, which isn’t always the experience for someone who thinks they might have Lyme or is unsure of their diagnosis. The doctor gave me an antidepressant and scheduled a nerve block procedure. He also referred me to a ketamine clinic. With the therapist, I was still a little skeptical of the mind-body approach, but I kept it in mind as a backup to whatever plan I could create with the clinic.

After some insurance mishaps and the usual hijinks of the medical system, the nerve block procedure never really was completed, but I did six sessions of ketamine in June 2023. The ketamine didn’t give me a sense of ‘instant relief’ that some had told me about, but being under the influence of the ketamine was a good opportunity to do the exposure work that the mind body therapist had told me was the way to get the full benefits from mind body treatment.

Before, I was having trouble talking because of a pain in my throat. So, during the appointments, I decided this was my best chance to change things. As soon as the appointment started, I talked–not worrying about the consequences or pain that might result. That pushed me through the threshold and I started talking and talking and talking. The ketamine made my body feel numb so the different movements and exposures seemed less risky. After that appointment, I knew exactly what I needed to do next. For the next two appointments, I did more and more until on the last appointment, I didn’t stop talking after the appointment ended. Sure, I didn’t talk quite as fast, but I no longer took great pauses based on what my body was telling me. I knew my body was short-circuited in a way and sending signals to my brain that just weren’t true. This gave me permission to deny the sensations–an idea that can only be embraced after every physical explanation is ruled out.

So, with the jump start from the ketamine sessions, I began my exposure therapy under the mind-body philosophy and program. My therapist helped me create a plan for unlocking every part of myself again. I couldn’t fix everything all at once; it’s a process of slow and gradual changes. I knew this was going to take a while, but I was ok with that. I laid out the plan like this: first, to fully unlock the voice. Then, my hands and feet. For my hands, I started with simple sensations such as touch and moved on to basic movements that I needed to complete during a day, like brushing teeth and holding things. Next, I took on dexterous movements like using a video game controller and guitar. Finally, I worked on strength. I used a similar approach for my feet and diet. My voice took about 2-3 weeks. My hands took about two months and my feet took another two months. Elbows, extra sensitivities, and other diet changes took a few more months and are still ongoing.

The idea that what I was feeling wasn’t representative of physical changes or damage but was rather a neurological error was hard to come to terms with at first. But, the therapy kept working so my confidence kept growing. Now, I’m almost fully recovered. I can play sports again, go on runs, swim, play video games and guitar, and do everything that I could before.

My sensations are still with me; they’re like acquaintances who come and go from the house. It doesn’t bother me when they show up and decide to stay the night, and it doesn’t bother me when they leave the next morning. I might feel an echo of the tingle in my elbows that I used to always deal with or a strange pulsing in my hands or feet. There’s a chance that one day they’ll stop coming by altogether, but that leaves me neither sad nor happy. It just is.

In total, my journey was about 30 months. What a wild chapter of confusion, despair, loneliness, alienation, hope, inspiration, and redemption. Looking back, I can see that everything kind of had to happen the way it did in order for me to find my solution. Without the LymeLight grant, I never would have been able to pursue that treatment avenue fully, and then I wouldn’t have found the pain clinic and mind body therapist.

I have many mixed emotions about these past years. I wouldn’t wish it on anyone, but sometimes I think it gave me a unique perspective and a truer empathy for others. At times, the present feels surreal when I think about how I was a year and a half ago. But, I kept believing that I would get here. For anyone still going through it who’s reading this, I hope you find the key to your health.

There is always hope!

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