Ah, where to begin.
First I want to say that the conclusions I have drawn about my medical journey are difficult to be certain about because there are so many variables involved. These are educated guesses based on symptoms, lab work, research, and clinician expertise. I also want to make it clear that I understand the controversial politics of Lyme disease, and that this is merely a story of my personal experience with it. My opinions are strong because of my experiences, and I do not intend to offend anyone’s beliefs by sharing my story.
So, my health really started to tumble into turmoil around November of 2017. Although, I think I started suffering from chronic inflammation and illness several months prior. Let me paint you a picture of my life leading up to my diagnosis…
During the fall of 2016 I started my senior year at Boston University. My days typically started around 7:00 a.m. with a 5-8 mile run. Then I would head to class, then I would head to my internship, then I would go teach yoga or group fitness, then I would go to dance rehearsal, then I would wind down my day at CorePower yoga. I was overloading on upper level finance courses, training for a half marathon, working for a startup juice company, and balancing a handful of extracurriculars. I wasn’t exactly a straight A student, but that’s mostly because I chose to spend my time on passion projects over school work. I still did well in my classes, nonetheless.
During the spring of my senior year I moved back to California, took a couple of night classes to finish my Finance degree, interned in the P.R. department of Fabletics, and spent most of my days off on solo 15-20 mile hikes. I started rock climbing, training for another half marathon, and I traveled to Peru by myself to hike the Inca Trail to Machu Picchu. I was living my best life.
Post-Peru I suffered from “travelers diarrhea,” which I now know was caused by a protozoan parasite called cryptosporidium. I was prescribed Cipro by my general practitioner, which is one of the most dangerous antibiotics on the market. I did not know that at the time, I just assumed that doctors know best and I took the Cipro. My symptoms resolved and I went on with my life. My travels to Peru inspired me to take the summer off after graduation to travel some more, and I planned a three month long backpacking trip throughout Europe and the Middle East.
I was part of an educational backpacking group in Israel/Palestine where many of the group meals were made up of bread, pita, and/or pasta. Me and one of the other girls began preparing our own meals filled with more fruits and vegetables and were criticized by the group leaders for acting “privileged.” Although I didn’t know it at the time, my intestines were still infested with parasites and all of the carb-filled meals were causing a flare up of unbearable symptoms. I wasn’t acting privileged, I was sick and trying to do right by my suffering body. But, our “privileged” behavior led to a pretty big divide and uncomfortable group dynamic so we left the trip early to go travel in Europe. Just for the record, I am the first to admit that a healthful lifestyle and organic diet is a huge privilege. People’s dietary choices are very personal. No one should feel pressured to eat a certain way just because that’s how everyone else wants to eat, nor should they have to explain themselves. During the rest of my travels I prioritized nutritiously dense meals and noticed major improvements in my gut. I didn’t think twice about my reaction to excessive amounts of pita because I figured all of my symptoms were from gluten overload.
After returning stateside I went on a backpacking trip in the White Mountains of New Hampshire. I experienced an acute flu during this trip that lasted ~32 hours with symptoms including fevers, chills, soar throat, runny nose, etc. I now know that that’s when I likely got bit by the tick that gave me Lyme disease and co-infections.
Throughout the rest of 2017 I experienced more debilitating gastrointestinal issues as well as mild fatigue. I was struggling to maintain two part-time gigs at Anthropologie and LuluLemon. Two retail jobs during the holidays led to 60+ hour work weeks, which is something I thought would be totally manageable. All throughout high school and college I thrived on being busy. Looking back now I think I was in complete denial about how overwhelmed this workload made me feel. I was ignoring all of my body’s cues. Things only got worse at the beginning of 2018, and after a trip to the ER in March I finally decided to seek medical attention. I visited an asthma and allergy specialist to get tested for food allergies, and all of the test results came back negative. The doctor told me to stop eating so many salads and that I likely just have IBS. I pretended like I believed this was sound advice, and left feeling utterly disappointed due to the lack of concrete answers.
Come April, I moved to Portland, Oregon for a job opportunity at Morgan Stanley. I continued to work at Anthropologie while I studied for my licensing exams, and eventually became so ill that I was calling in sick for every single shift. I decided to put in my two week notice to focus on my exams, but even without the stress of a part-time job I was struggling to make any progress. I made an appointment with a general practitioner in Portland to get some routine blood work done. She suspected I might have hypothyroidism and/or anemia, but all of my blood work came back normal. She also ran and ELISA test for Lyme knowing that I had spent some time hiking in New Hampshire. My ELISA was negative. One of the doctor’s in the office made it very clear to me that if my ELISA was negative then I 100% do not have Lyme disease, and he started to bridge the discussion of diagnosing me with anxiety and/or depression. I just moved to my dream city, got an amazing job offer, and live in the most perfect apartment with my favorite human. Depression? Really? My boyfriend’s mother suffered from chronic Lyme and they were both very suspicious that I might have it, so I started looking into seeing a Lyme literate doctor.
I made an appointment with a Lyme Literate Naturopathic Doctor (L.L.N.D.) in Portland, and after the initial consult she tested me for Lyme disease and parasites. My Western Blot was IgM Band 39 positive. Band 39 detects an antibody that is 90% specific for Lyme disease. This result would not be positive according to CDC standards, but any Lyme literate doctor would interpret this as a positive test result. For those that aren’t familiar, the CDC approved Lyme test is a two-tiered blood test. The first is the ELISA and the second is the Western Blot. Because the spirochete bacteria do not live in the blood, using blood work to test for this disease leads to highly inaccurate results. The ELISA is falsely negative in 60% of patients, and it is against CDC protocol to run a Western Blot after a negative ELISA. Many Lyme patients get misdiagnosed for years because of this. Some of the leading researchers in the field believe that Lyme should first be clinically diagnosed using a differential diagnosis method, and blood tests or PCR urine tests should be used only to support a diagnosis.
In addition to Lyme, I had astronomically high results for Epstein Barr Virus (EBV) and HHV 6 indicating a compromised immune system. I also had very low levels of vitamin B12, and high levels of C reactive protein indicating a high level of inflammation in my body. All very common things in people with Lyme. There were a few other significant findings, but those are the big ones that first come to mind. The L.L.N.D. started me on an herbal protocol immediately. I found out that she had my positive Lyme results for over a week before informing me, and this lack of urgency raised some red flags. I decided to look for a different doctor.
A week and a half later my mom, boyfriend and I all flew out to Washington D.C. to go see a specialist at the Jemsek Clinic. There, I was clinically diagnosed with Lyme as well as Babesia and Bartonella, two common co-infections. I was prescribed a pulsing antibiotic protocol and a handful of more supplements to take to help boost my immune system.
Shortly after starting the antibiotics I started to see parasites in my stool (sorry for the TMI). The cryptosporidium parasite I mentioned earlier is microscopic, so I have no clue what else is living inside of me. Based on my research I felt that dealing with the parasites would be imperative to my healing, and out of frustration decided to go on a DIY self-prescribed parasite cleanse consisting of herbal supplements and a keto diet. I also made an appointment to see a Lyme literate functional doctor to get a second opinion about everything.
This brings us to present day. I am currently taking 5 different antibiotics, a handful of herbal tinctures, a very arduous supplement regimen, and am reluctantly on a strict keto diet. I am in the process of getting a more comprehensive stool test done, a SIBO test, and more tests to confirm the diagnosis of Lyme and co-infections through a specialty lab called IgeneX.
For months I was completely blind to the fact that all of my health issues were related and much worse than I thought. I was silently suffering because I had adapted to a new normal. Chronic illnesses like Lyme disease are on the rise, and the medical community at large is completely incompetent when it comes to catching the underlying issue of these types of diseases. I want to share a couple disappointing experiences I’ve had with medical professionals over the past several months that stand out to me…
The general practitioner I mentioned earlier barely entertained Lyme disease as a possible diagnosis, and told me not to believe anything I read on the Internet about it. Though I do believe medical misinformation on the Internet is a prominent problem, her urgent dismissal of the disease was alarming (but expected). Once I had test results from other doctors that painted a clear picture for Lyme I informed my GP of this diagnosis. She asked for all of my lab work. I sent everything over to her in hopes to broaden her scope, but I never heard back.
My doctor at the Jemsek Clinic recommended that I start working with a gynecologist. I made an appointment with one in Portland who lectured me about birth control options to “suppress” my hormones because I suffer from painful and heavy menstruation. I took the pill for 7 years and stopped taking it in the fall of 2017 because I became aware of the long-term damage it can do to your hormonal cycle, fertility, and gut microbiome. I explained to her I had no interest in synthetic hormones, but she persisted and continued to inform me about contraception. She also admitted that she wasn’t all that familiar with Lyme during my appointment, and the next day I received a phone call from her about it. She told me she had done some research about Lyme and asked if I’d like a prescription for some sort of pain management medication to help with my symptoms. Why are so many doctors so quick to shove pills down our throats!!!???
This disease requires you to be your own advocate, which is not easy to do while crippled with fatigue and brain fog. Getting through the physical ailments is not the hard part; it is the countless doctor appointments that lead to no answers, the frustration of not being able to fully trust anyone in the medical field, the judgement you receive from others for your “hypochondriacal” behavior, and the thought of wasting away your early twenties.
Lyme disease has exposed me to a side of myself that is much more empathetic, understanding, and relentless in pursuit for good health. I don’t know what doctors learn (or don’t learn) in medical school that make them so unwilling to treat this disease, but I have honestly prospected the idea of applying to medical school just so I can find out and attempt to make a positive change. I figured blogging about it might be a little less expensive though lol. I share all of this with you in hopes to raise awareness for chronic illness, to get you to question yourself and tune in to your body’s cues, to have a cathartic outlet, and to spread the word about a highly misunderstood disease that is becoming a growing epidemic.