babesia, mast cell activation, + fissures

Given a recent doctors appointment I had with the Lyme specialist I am working with, I wanted to share a more in depth update about what is going on with my health these days. Going into the phone call I expected to hear that I’d be starting my last round of treatment to tackle Bartonella, but instead was told I still have months to go with my Babesia protocol. Not only that, but she’s kicking it up a notch and throwing yet another antibiotic into the mix. I’ve done almost 4 months of Babesia treatment at this point, and now I have another 4 more to go before starting a Bartonella focused protocol. Keeping track of my protocol and maintaining a rigid detox regimen is a hefty load, and I’m exhausted.

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commitment issues

I’ve become a person who has commitment issues. Not the kind of relationship-related commitment issues that probably initially come to mind, but the kind where I just can’t commit to anything. At all. It goes against every fiber of my being, but every major commitment I’ve made over the past few months I ended up having to back out of. Not being able to commit to anything has required me to embrace the concept of living in the moment on a whole new level. The Capricorn within me feels slightly trapped by this, but I have a hunch that this is encouraging a type of growth that I desperately need.

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on guilt

My whole life I have never been someone who frequents the doctor’s office. In fact, I avoided doctors appointments as much as I could most of my adult life. I never wanted to use unnecessary antibiotics, and I strongly believe in the body’s ability to heal itself. When I was diagnosed with Lyme disease I was at a major crossroads. I was going to have to rely on Western medicine in order to heal, and that didn’t sit well with me. Though my first doctor believed I might be able to heal holistically, the Lyme specialist I saw for a second opinion told me I’d need to be on a pulsing antibiotic protocol for 12-15 months. The idea that I am currently taking 5 different antibiotics is something I grapple with internally every single day. I have spent the past 5 or so years of my life transitioning into a holistic, organic, and non-toxic lifestyle. Health & wellness is one of my biggest passions, and the politics and lack of ethics of our food system, pharmaceutical industry, and medical community disturbs me. I think there is a lot of guilt that comes along with utilizing Western medicine for many people. I experience the feeling of guilt towards my Lyme protocol every single day.

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Throughout my entire protocol thus far I have been telling myself I won’t stay on antibiotics for more than 6 months. Though based on my extensive research I believe antibiotic treatment is necessary to treat this disease, I still can’t handle the idea of being on pharmaceuticals for an entire year. I wish I had the knowledge to know what course of treatment is the right path to go down. My gut tells me that long-term antibiotics is not the path, but my doctor is telling me otherwise. Though I know I am not the one with the expertise, I do believe that our intuition possesses unprecedented value. My view of the medical community is incredibly tainted. It has been for years. Physicians are too quick to write prescriptions, and often times do not solve the root cause of peoples’ health ailments. Once I started educating myself about my food choices, the food industry, and the way in which food affects our body I started to realize that lifestyle and diet play a huge role in our overall health.

I have sat at dinner tables with people who talk about how they take blood pressure medication every day, and then witness them order a steak. Not that there is anything wrong with steak, but red meat is a huge contributor to high blood pressure. Perhaps transitioning to a predominantly plant-based diet would be sufficient? Perhaps more plants and less red meat would mean there would be no need for daily medication? Perhaps physicians should educate people about their food choices and the impact they have on their health ailments? Perhaps medical schools should spend more than the mere 20 hours that they do educating doctors-to-be about nutrition? As I’m sure you can tell, I’m not shy in hiding my judgements about this topic. I will never judge someone for their food choices, but I will judge the food industry and the medical community for doing our society a huge disservice.

Conventional medical doctors most times don’t take the entire picture into consideration. For example, lately I have been struggling with horrible insomnia. Even with a generous dose of my 20:1 CBD tincture, I often am up until at least 3 a.m. I have implemented several practices to improve my sleep hygiene including keeping all electronics out of my bedroom, turning the blue light off of my phone and computer, having a relaxing nighttime routine, etc. Still, I have insomnia. The cause of my insomnia could be from parasites. Parasites are most active at night, which can often keep people frustratingly awake. It could also be due to the fact that I am now on a Keto diet, and switching energy sources from carbohydrates to lipids is a frequent cause of insomnia. I also could be experiencing insomnia due to anxiety caused by Lyme, Lyme disease itself, one of my co-infections, and the list goes on. When I spoke to my Lyme doctor about this she immediately wanted to prescribe a sleeping medication. I already take a prescription called Gabapentin which is supposed to help regulate my pain and my sleep. Why the hell do I need Trazadone too? Sleep is imperative for the body to heal, and I get that. But the last thing I want is another pharmaceutical to depend on. She didn’t take into account the many possibilities that could be causing my insomnia, she just gave me a prescription. In the long run, how does that help me?

I am slowly learning to surrender to this process. Western medicine has been instrumental in my health improvement thus far; and though I believe I experience many adverse effects of antibiotics as well, I am grateful for present day technology and science. I am doing my best to educate myself from reliable sources throughout this process so that I can be the best possible advocate for myself. I have gone into every doctors appointment with a level of skepticism and reluctance. I question everything. I do my own research. I advocate for my beliefs and wellbeing. And at the end of the day I make my own health decisions. Right now, I am choosing conventional medicine. I am also choosing functional and Eastern medicine. My Lyme doctor isn’t fond of me working with a functional doctor as well (I suspect mostly for liability reasons), but having a second opinion about everything from someone who understands my values and beliefs helps me immensely with this process.

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I feel like a fraud advocating for a holistic lifestyle every day on my Instagram account because right now my health is incredibly dependent on pharmaceuticals. I recently spoke to someone in the health world who has been a huge inspiration to me for a few years now about this. She told me not to feel guilty. She told me that at the end of the day we have to do what is necessary for our health. She told me that if it were her, her husband, or her son in my position she would have to make the same decision I am making.

Though I have vowed to myself to live holistically, I am realizing that there will be times in my life where I will need conventional medical intervention to maintain my good health. My experience with the medical community throughout my Lyme journey has left me a bit jaded, but feeling guilty every day about a decision I am making to better my health is wearing me down. It is a guilt I need to let go of. It is a guilt I hope to learn from. And It is a guilt that is making me more compassionate with myself on this journey. I am now 3 months into my protocol, and I am starting to realize that quitting at 6 months might not be the right move. My internal guilt will persist throughout this process, no doubt. But, I am making the choice every single day to heal. I am fighting. And I will win.

I’m grateful that I was in such good health going into this illness. I believe that my recovery will be much more swift due to my healthful lifestyle during the preceding few years. I still believe that prevention is undoubtedly the best protocol out there, and will continue to live my life based around my values for holisticism throughout this process and afterwards. All guilt aside, I am healing. That is all that matters.

my diagnosis

 
White Mountain National Forest

White Mountain National Forest

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.

Macchu Pichu // Enjoying the view after a 4 day trek on the Inca Trail.

Macchu Pichu // Enjoying the view after a 4 day trek on the Inca Trail.

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.

Area C West Bank // With my friend Monika, who I went on to travel in Europe with.

Area C West Bank // With my friend Monika, who I went on to travel in Europe with.

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.

Mount Hood National Forest // First adventure in Oregon.

Mount Hood National Forest // First adventure in Oregon.

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.

Packer Orchards // A few weeks after my diagnosis. As much as I loved these sunflower fields, I could only handle the heat for about 30 minutes.

Packer Orchards // A few weeks after my diagnosis. As much as I loved these sunflower fields, I could only handle the heat for about 30 minutes.

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.