You know, the kind of determination that will encourage you to also see the ups and downs, hardships, pain, and unforgiving amount of change and inconsistency as ways to keep pushing through. To keep asking questions. To keep trying, because there are just too many adventures to be had, insight to pass on, and connections to be made
This is a story by + about, Lindsey Riley
Where to begin...
You know when you stumble across something, or someone, that you, without hesitation, know is jam-packed-full of goodness, life, compassion, and motivation grand enough to give you every reason to keep on keepin' on?
Well, Lindsey is and will continue to be one of those people: contagiously full of life, driven by love and compassion, and bound to fill-you-up-with-hope no matter the situation. And this, this description of such an inspiring person, it comes from the story she has shared with us below, as well as the few interactions I've had with her through social media. So if these small but impactful moments make me want to lean in closer, seeing, hearing, and continuing to be in awe of all that Lindsey has done and the plans she has for her future (not to give away too much, but they involve using her experience in the medical world to help people with Lyme + other complicated diseases), then I'd say that this gal is nothing short of magic.
The kind of magic can turn a pain filled and fear driven disease into every reason to either start, or keep doing what you love - no matter the obstacles ahead of you.
What does it mean to be human? I’ve been trying to wrap my head around this question for months. To me, to be human is being able to experience truly intense emotions – fear, joy, love, frustration, anger, sadness, pain, excitement, and hope. I don’t know, but I think that the most able humans are defined by how they choose to experience change.
Here’s a little snap shot of what my life was, what it is, and what it will become.
It has nearly been one year… 12 months, 365 days… since I’ve spent 4% of my life healing from one hell of a disease. It doesn’t seem like too long. Maybe it’s not in the scheme of things. But for me, it feels like a lifetime.
My Lyme story starts out very different from most peoples’. I can recall the exact day I found a tiny round nymph burrowed into the back of my neck. In fact, I have pictures.
This was the event that changed my life.
But in retrospect, this event was a-long-time-coming.
For the past 6 years, I committed my life to studying Biology- the study of living organisms. I’ve always wanted to help people for a living. So I decided I needed to study living things and figure out the best way to serve them. I went from studying worms in a lab, to studying different species of plants in Nevada’s ecosystem, to getting my master’s degree in physician assistant. During school, I spent months medically treating indigenous people in remote areas like the Gambia, Africa and Rurrenabaque, Bolivia. I decided to spend the last year of PA school traveling every 6 weeks to different hospitals and clinics all over the country and world to study various areas of medicine.
Working in rural and impoverished communities stole my heart. It was the dream job and my true passion. I passed my national board exam in January 2016 and quickly decided to be a primary care travel PA. I accepted a job working for 3 months in rural Salinas, California, using the medical Spanish I’d learned in Bolivia. The plan was to spend the rest of my life traveling to communities in need to provide medical care. This happened one day before I met the love of my life, Kawika, in Austin, Texas.
I have always been the type of person who wants to get the most out of life. I love to go to festivals, travel, camp, dance, do yoga, and spend time with my amazing family and friends. So, when Kawika came to visit me during my 3-month contract in Salinas, we went on many camping trips… including one to the Redwoods.
After my contract ended at my travel job, Kawika and I decided to take a few months off of work to travel throughout Europe. We started at his hometown in Dublin and spent the next few months backpacking.
Que subtle changes.
I was so jet lagged and exhausted that I napped everywhere we went- at airports, on trains, in cars. I even napped on long hikes; I would find a nice place to curl up on the sand or in the woods and just sleep.
Typically, I am not one to think something is wrong. I am a PA, but I make the worst patient. I started getting migraines about 6 weeks after the tick bite. I never had a migraine before, and all of the sudden, an insurmountable pressure wave would come over me. It’s like the earth was trying to flatten me out. This started happening once a week, then twice a week, then every other day. We were in Barcelona when I noticed it was affecting my every move. When we got to Italy, I picked up some over the counter anti-inflammatory. The Italian- English language barrier was difficult to interpret, but the pharmacist seemed to think the drug would help with the migraines. I toughed it out.
We continued on our travels, ending our Euro trip on a yacht in the Saronic Islands in Greece. I was having intense mood swings. We were drinking a lot of alcohol, eating as much gelato as possible, and on foot most of the day. But things were getting worse. A couple times, Kawika nearly took me to the hospital because of intense heart palpitations, but I always told him I’d be OK. I worked in emergency departments and knew they wouldn’t do much for me. I breathed through the pain. We started spending most nights in instead of going dancing with friends. When we finally came back to the states, I was relieved of the stresses of traveling internationally.
But we still had plenty of traveling to do… from graduation parties, to family reunions, our schedule was still tightly packed. The fatigue was worsening. I remember being at one of Kawika’s reunions… everyone was going mountain biking. I really wanted to go but felt dizzy and sick. I went anyway and was the slowest one in the group. I was so unsteady, and when we got back to the cabin, I made a beeline for the bedroom and spent hours recuperating from the migraine and weeks recuperating from the ride. Kawika came in to check on me later that night. He said he’d flicked a tick off his arm during the ride. He asked me if I remembered being bitten earlier this year.
I did remember. Tick bite. Lyme Disease. Light bulb!
My aha moment lasted seconds. Within minutes, I called a doctor in the area. We were on the east coast and still had a month left of our trip, but I knew I needed to get tested for Lyme. The day I was tested, the joint pain set in. I spent hours to days flattened out on beds in guest rooms of distant relatives, writhing in pain.
Four months of antibiotic treatment later, I was barely able to move. The doxycycline relieved me of symptoms for about a month, which enabled us to finish up our travels, get engaged in Hawaii, and move to Austin.
That engagement told me everything about what kind of man I was with. Not only did he want to marry me during the worst period of my life, but he wanted to stand with me to be my advocate... forever. I will always be grateful.
When we got to Austin in September, I was bed ridden. The decline in my health was fast and abrupt. I was in too much pain to lift a fork to feed myself, had migraines every day, and was having extreme muscle spasms. I went to primary care doctors and infectious disease clinics. All of my immune function tests came back low. All of my hormone tests came back low or absent. Practitioners offered me IV immunoglobulin therapy, which costs thousands per treatment and are relieve symptoms temporarily. I was given synthetic testosterone, estrogen, steroids, anti-inflammatories, and antibiotics. But nothing was effectively working.
I was being treated for “post-viral-stress disorder.” Some of my Lyme tests came back with positive antibodies but not enough to be officially diagnosed by the CDC. Doctors said, “Forget you have Lyme.” They told me, “You’re too convinced you have Lyme. You need to rest and in 6 months, you’ll be as good as new.”
As a practitioner, I knew what they saw: a 25-year-old female complaining of vague flu-like symptoms… what some people have misdiagnosed over the years as “hysteria.”
They didn’t know me before. They couldn’t see my wide, uninhibited smile. They didn’t know how much compassion I gave to my patients or how much love I held in my heart. They didn’t seem to care.
But my fiancé and I were determined. As a PA, you learn that the gut instinct of a patient is generally right. At least that’s what you learn if you’re a good PA. I had to reverse my role from treating patients to being the patient, which was not easy. But I was coherent enough to know that nothing and no one was helping me get better.
We took my care into our own hands. We learned what Lyme literate doctors were and watched hours of YouTube videos on the controversy of Lyme. We learned that most Lyme tests are ineffective or falsely negative or positive. Genes and environmental factors play a huge role. We learned that we had to trust only in our intuition.
After many emails and phone calls, we found our current ILAD doctor who has been treating me for five months now. Finally, someone who looked at me and knew I was ill. It was like his soul understood mine and felt the distress I was in. He looked at Kawika and asked, “She’s not normally like this, is she? I can tell.”
Immediately, we did urine tests for various DNA of tick-borne illnesses. He took stool samples. He took blood. Everything was positive. Everything pointed to the fact I had stealth infections that were plaguing my body and impeding themselves on my soul.
Diagnoses: Systemic Lyme, Yeast, and Parasites.
I immediately started weekly IV therapies including Meyers cocktail, glutathione, then graduating to NAD treatments and ozone infusions.
One of my biggest struggles was having to believe that I was truly sick. This disease isn’t textbook. This isn’t what I learned in school. I actually remember being tested during one of my practical exams in PA school on Lyme. One of my fake patients presented with vague symptoms and a rash. During the exam, I ran some blood work and told him to take electrolytes and rest. I diagnosed him with the flu. I would follow up in 1 week. I only received half credit for that patient because I missed the diagnosis- Lyme.
Everyone presents differently with Lyme, and too many practitioners DO miss the diagnosis. And this is real life.
I started turning to herbal supplements because I was beginning to realize my body was no longer tolerating the synthetic drugs. I also started seeing worms every time I went to the bathroom- ranging from all shapes and sizes. I’m sorry if this sounds gross, but I have had to deal with that for 4 months now, so this is basically dinner conversation.
Detox detox detox. Along with IV therapy, I started doing daily coffee enemas. I went to the infrared sauna to sweat out toxins. I got as much sunlight as possible. Acupuncture for migraines and joint pain. Chiropractor for joint movement and cervical spine arthritis. Massage for lymph movement. Rebounding for lymph drainage. Biomagnetism for parasites and symptoms. Infrared light therapy for joint swelling. Psychiatric therapy for anxiety. Meditation for mind control training. Breath work for emotional release. Nutritionist for candida and ketogenic diet. Epsom salt baths for detox and relaxation. Masks for environmental toxins and heavy metal toxicity. Glasses for migraines. I went from being vegetarian to gluten free to dairy free to sugar free to paleo to a ketogenic diet, eating as low as 16 carbs per day while incorporating intermittent fasting for 18 hours a day.
The theory: I was on anti-acids including proton pump inhibitors (omeprazole) for almost 10 years due to a stress reaction I had as a kid. This damaged my gut flora, making my gut environment welcoming to hosts like parasites when I traveled to underdeveloped nations during school. I started getting infections once I returned from South America but thought that was normal because I had been exposed to so many diseases. When I was bitten by a tick that transmitted Lyme, my whole immune system shut down and I could no longer fight the multiple stealth infections. Then the long term antibiotic for Lyme caused me to get a rare strain of systemic yeast.
The parasites are the worst. I think they have had control over my physical and mental self for longer than I can know. There were months where I had strong bouts of depression and anxiety. There were times I’d be sitting in a room with family, and a panic attack would come over me along with heart palpitations. I couldn’t recognize anyone, my body would go stiff, and I’d want to scream. This is what we in the Lyme world call “die off.” But it got worse. Sometimes, die-off lasted days. I’d spend hours wanting to rip my hair out, slit my wrists, and end it all. I sometimes stayed up all night drawing pictures of worms or writing dark poetry. I could see the worms swimming across my eyes. I felt them in my heart and my brain. These were the scariest moments of my life- a total loss of control. These are the times that are the hardest for me to talk about.
But this is the information people need to hear because this is NORMAL and, unfortunately, a COMMON part of the disease process.
How did I get through this? Breath. One breath at a time. When it felt too hard to deal with pain, I counted. I typically counted back from 100. But when die-off was too much and I forgot how to count, I closed my eyes and felt my warm breath. I listened to it. I appreciated that even if I had lost control of my body and mind, my breath was always there. It helped me survive even if I didn’t want to.
Anti-parasitics changed everything. When I finally decided to use multiple synthetic anti-parasitic drugs, I committed all my time and energy to this. Before doing so, I had been treating Lyme for nearly 5 months and had finished my yeast cleanse. So I knew I was ready to devote my time to the worms that had made me their home for too long.
You know, it’s so easy to think this is the way it will be forever. I am still recovering. I am still healing. I am trying new therapies every week and thirsting for as much knowledge about the disease process I can possibly find.
I am so thankful for my family and friends for providing their support and love, but no matter what, if you don’t have Lyme, it IS hard for you to relate. It’s hard to relate when these symptoms are as bizarre as they sound. So, I get when people in my life don’t know how to deal with this. At the same time, the best people in your life are the ones that stick by you and continue to call or show up every week just to be there.
As for me, being kind and gentle with myself is my most important treatment. As a kid, I always believed that if one really bad thing happens to you, that’s it. That’s your test or God’s way of challenging your true self. And from then on, things will be easier. Now, I know that’s not true. But, I do believe that experiencing challenges, one after another- no matter how big or small- is part of a beautiful life that was granted for you. It is sacred and whole, and it is yours. It’s important to learn to navigate through your life and learn your true self during any and every difficult situation.
Now, I wake up in the morning next to a man who loves me unconditionally. I mediate for 20 minutes before doing anything. I start my day eager and bright (the amount of eagerness and brightness vary depending on the day). Nonetheless, I am constantly aware of flow- being calmly, joyfully, and productively engaged. Whether I experience this at a doctor’s appointment or on my couch buried under a blanket, it doesn’t matter. I am here, and I am living.
This is hard. But this was my chosen path. I will, one day, treat people with similar illnesses. I will always strive to find proper and better treatments as a practicing PA. I will be one of few practitioners who can actually comfort a patient by saying, “I know what you’re going through. I’ve been in your shoes.” I plan on creating a standardized protocol for Lyme patients. And I will forever be passionate because this is my life’s work.
This… all of this craziness and madness…this was worth it - now to go back to the beginning of this very long story…
I think one of the most difficult and most important things to do as a human is maintain the ability to be level-headed. As a sick person, this seems like an impossible feat. The ideas of stress and the agony of pain blind that vision. But if you’re able to overcome those thoughts, composure can act as the difference between something that seems so hard and something that can be accomplished.
You will get better. I will get better. We will all have adventures, big weddings, round-about-journeys, belly laughs, delicious foods, and all the good things. We have SO much to look forward to; I’m exhausted just thinking about it.
After all, we are only human. And even if our bodies are weak, may our souls be strong.
This girl has endless amounts of stories to share and incredibly helpful information to pass on, not to mention her full-of-life spirit has a way of making the hard stuff, seem oh so possible. So if you'd like to continue to be encouraged and inspired by this amazing woman, give her a follow on Instagram.
She has helped me more than I can say!
& in the meantime, be sure to share your story #morethanlyme