Help Natascha Beat Chronic Lyme Disease

Dear friends. My name is Natascha, I am 30 years old, and I am fighting late-stage chronic Lyme disease.

For those who are unfamiliar with how these symptoms can manifest and how I hope to address my own situation, let me provide a brief summary of what is happening. If you’d like to know more—or perhaps you or someone you know is in a similar situation and are feeling isolated in the experience—I have also written a more in-depth description of my journey with chronic Lyme disease below.

I have been navigating a number of mysterious, increasingly painful, and confusing symptoms for nearly a decade. Two years ago, I finally encountered a doctor who put my symptoms together and tested me for Lyme. My results came back positive according to both the CDC criteria and independent laboratory testing. Unfortunately, Lyme gets worse the longer it goes undetected, and so I find myself at a point where my daily life has become radically altered due to my advanced symptoms. Lyme spirochetes bury into cartilage and joints, and at this point, the pain is at a constant level of distress, both while awake and throughout the night while I am trying to sleep. These spirochetes can also travel into the heart and brain, which over time, can be fatal in some cases. I have started to feel the cognitive and coronary effects of this. Simply put, it has slowly distorted my entire physiological system. I suffer from extreme fatigue. I am not able to work consistently, to get groceries, to drive far distances. I have to use a stool to sit in the shower. I have to nap after any physical activity, such as doing dishes. I am always in pain, particularly in my torso and legs, which is incredibly distracting. Sometimes, I can’t lift a glass to drink or a plate to eat. My memory increasingly fails me, and I often cannot find the right words for things. My heart rate spikes after standing, and my blood pressure dramatically decreases or increases with movement. I am using a cane and a wheelchair more frequently due to dizzy spells and exhaustion.

I am declining… and I need lots and lots of help.

Lyme is known as the “great imitator” and can be very difficult to diagnose and treat. Due to these complications (and/or other obvious economic reasons), insurance companies do not cover chronic Lyme treatment. The U.S. falls far behind many European countries making advances in research and treatment around tick-borne illnesses. I am lucky to have found a doctor here in Oregon that has devoted her career to this specific kind of illness, and over the last year, we have tried a range of protocols to address my symptoms. Unfortunately, this advanced illness has proven to be resilient in the face of our efforts, so my family and I have made the complicated decision to pursue a more intensive treatment that will address the illness at a cellular level; a treatment that will finally bring my body to a place of functional repair, yet will also be incredibly expensive. A full breakdown of estimated costs will be elaborated on below, but in summary, each treatment consists of a unique IV infusion that will cost USD $655 on average, and it is expected that I will have to undergo 60-80 of these. So these infusions alone will cost between USD $40,000-$50,000, not to mention supplementary treatment efforts, loss of work over the next year (responses to this treatment makes one feel much worse before feeling any better), and the burden of basic costs of living that we all know so well.

If you would like to read more about my history with this disease, and the financial breakdown of treatment/other costs, you can read more below.

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Lyme affects people of all levels of physical activities, in various ways. As you know, when we look at the impact of a disease, we often turn to the patient’s baseline first to understand just how far things have progressed. So here, at the beginning of this story, I aim to paint a picture of what life was like before things started drastically deteriorating.

After I graduated from NYU in 2014, I worked for a few years in the outdoor industry, during which time I backpacked, canoed, and completed physically demanding trail work with high school students in Alaska and Washington. I lived in tents for 8 - 30 day stretches at a time. I traveled back and forth between the Pacific Northwest and southern Patagonia, the latter of which found me frequently backpacking as a part of my work efforts in ecotourism. I grew up a dancer, and as an adult, found new excitement and joy on aerial silks and trapeze. I eventually went back to graduate school in the fall of 2020 and began an academically and emotionally grueling program at Portland State University to become a mental health counselor, inspired by my work with high schoolers in the wilderness.

But also during this stretch of time, I began experiencing more and more pain. After navigating several mysterious, painful, and confusing symptoms for nearly a decade, I was finally diagnosed with Lyme disease in the summer of 2021. Unfortunately, I do not ever remember being bitten by a tick, nor have I ever seen a bull's eye rash on my skin. (Often, tick bites are less likely to be diagnosed on brown skin, since medical information typically only shows the se rashes on white skin.) That being said, after working years in the outdoors, I certainly know that I have brushed countless ticks off my body. Since Lyme was able to go undetected in my body for so long, I have developed a myriad of symptoms, including:

Diagnosis:

Prior to being diagnosed with Lyme, I was diagnosed with SIBO (small intestinal bacterial overgrowth). My doctor at the time prescribed me an antibiotic and antifungal medication to target this overgrowth of bacteria in my gut. Upon taking these medications, I started to develop a severe rash, and soon felt like my nerves were on fire. I was on vacation with my family in California, and ended up on the floor of our Airbnb, arms and legs spasming in pain. I ended up in the ER, where I was given steroids to relieve the rash. Upon returning to my doctor back home, she wondered if I was having a “herxing ” reaction, which is common in Lyme patients. A herxing reaction happens when an antibiotic kills Lyme spirochetes faster than it takes the body to eliminate them. This means that a person is then left with a backlog of dead bacteria, causing various symptoms that can make one feel much worse. She suggested that I be tested for Lyme, and lo and behold, my test results came back positive.

A Brief Medical History:

Prior to being diagnosed in 2021, I had seen countless doctors in different states and countries trying to understand what might be wrong with my body. Gastroenterologists, endocrinologists, gynecologists, numerous naturopaths, acupuncturists, general practitioners, surgeons, physical therapists. Multiple ultrasounds, blood tests, MRIs, x-rays, a breath test, an endoscopy, colposcopy, colonoscopy, diagnostic laparoscopy, echocardiogram, heart monitor. I tried multiple medications, navigating countless side effects, but nothing really worked. Since nothing worked, I was often told that it was just anxiety! And that I should work on reducing my stress levels.

Initially, I relied on what my insurance covered. I was working seasonally and not making much money, so I qualified for state Medicare. Working seasonally also meant that I was moving every 6 months, and did not have much continuity in the way of medical care. During this time, I was specifically searching for the source of my horrifying uterine cramps which often put me on the floor in pain, and occasionally caused me to black out or throw up. Eventually, I was diagnosed with polycystic ovarian syndrome, which did not necessarily explain the extreme uterine cramps, but hey, it was an official name of something. However, despite various interventions, the pain didn’t go away. Later in 2020, I underwent a diagnostic laparoscopy to explore the potential of endometriosis, but the results came back negative. My doctor told me that I may have adenomyosis (essentially endometriosis of the uterus), which is only possible to diagnose with a hysterectomy. I haven’t done that (yet).

After years of begging our traditional medical system for answers, I turned to naturopathic doctors. Here, I found professionals who immediately listened to me and looked at my entire system. At last, someone was listening to (and believing!) the whole story. However, my insurance did not want to pay for any of it. But at this point, I was ready to pay whatever it took. I was desperate. I was also lucky and privileged to have parents who could support me if I ran out of money—I had them to fall back on if needed. After my first naturopath in Portland diagnosed me with Lyme, she referred me to another naturopath in the area who specialized in treating chronic illness and had success with treating a number of chronic Lyme patients. I stayed with him for approximately a year before moving on. I wasn’t experiencing much improvement, and wanted to look for someone more specialized in Lyme disease. This is when I found my current doctor, Dr. Melanie Stein, who has been instrumental in understanding my disease and co-infections.

This S*** is Expensive!

Since being diagnosed with Lyme in 2021, I have spent nearly USD $20,000 on doctors' visits, treatments (including acupuncture, IV infusions, and medications), supplements, and equipment (infrared sauna, mobility devices, monitoring vitals at home). This does not include all the gas money I have spent driving hours to different doctors' offices and treatment centers. This does not include all the money I have lost due to my inability to work and function reliably. Since insurance companies do not recognize chronic Lyme disease as being a real condition, they do not cover the cost of anything to treat chronic Lyme disease. For more information on this tragedy, I highly recommend watching The Quiet Epidemic .

A New Approach:

When I started seeing my current doctor, Dr. Stein, I was still in my final year of graduate school for Clinical Mental Health Counseling at Portland State University. I was really struggling. I was working part-time, providing therapy to clients at my internship site (unpaid), taking a full load of classes, and dog-sitting to bring in some extra money. It was really hard to comprehend how I was going to graduate on time with this chronic illness. Each day was a fight to stay present, stay awake, and distract myself from the pain. Dr. Stein provided me with supportive supplements and medications and started me on a weekly regimen of intravenous ozone therapy, which supports the immune system and oxygenates the blood. I was able to hobble through this last year of school and graduated on time AND even passed my board exams with an arguably dysfunctional brain. (Yay!)

Upon graduation, she suggested that I send in blood samples to a specialized lab in Germany to understand the current functioning of my cells. I wasn’t making significant improvements and was still having severe herxing reactions to the anti-parasitic medication I was on. (Right, I forgot to mention that Lyme infections can also introduce fun parasites, and make you more susceptible to parasites in general.) When we received my results, she told me that they were the “most significant” results she had seen in a long time. Essentially, it showed that my cell membranes are not working. Over time, the Lyme spirochetes had caused severe damage to my cell membranes and mitochondria. As a result, an extremely high amount of DNA has “leaked” out of my cells into my bloodstream. Out in my bloodstream, this DNA is able to covalently bond to chemicals and toxins that are lingering in my system. Since my body cannot detox properly, there is a surplus of toxins present. When DNA covalently bonds to chemicals, this forms DNA adducts, which damages the DNA and leads to abnormal replication. Without proper repair, this can lead to mutation and potentially cancer.

Woof! Complicated stuff, at least for my brain. While this was hard to take in, it was validating. It was an answer! It explained why nothing was working. If my cells weren’t working, how could any treatment actually lead to solid improvement? Everything has somewhat been a band-aid up until now. So that’s when she suggested Phosphatidylcholine therapy (aka cell membrane therapy). In summary, phosphatidylcholine (PC) is one of the building blocks of our cell membranes. By undergoing infusions of PC (along with a personalized cocktail of supplemental nutrients), the goal is to detox the cells and restore cellular functions.

After reviewing my blood test results, Dr. Stein estimated that I will need 60-80 infusions of PC. She recommends that I visit the clinic twice a week to receive these infusions, and each visit will take approximately 3-4 hours. Along with these infusions, I will need to undergo a colonic each week to ensure that my body is releasing all the toxins that are being cleaned from my system. This is a lot for the body to go through, and PC notoriously makes patients feel very ill before feeling better. Many people have to quit their jobs and rely on caretakers. After undergoing this treatment, Dr. Stein also estimates that I will need to take antibiotics to target the Lyme spirochetes more directly. The idea is that I will repair my cells enough so that they can handle the actual Lyme treatment.

So this is where we are today. After much thought and research and consideration and consultation, I have decided to embark on this treatment. I want to be more embodied, I want to be a good therapist to my clients, I want to be a good partner and friend and daughter and sister. I want to be myself again. And I believe this can be my chance.

Moving Forward:

Since this treatment can be very hard on the body, my parents are moving from Chicago to Portland so that we can move in together. I already need a lot of help in the way of caring for myself, and this treatment will amplify those needs. I cannot walk more than a block or walk up a flight of stairs without feeling extremely fatigued. I cannot get through the day without napping. It’s difficult for me to stand long enough to cook a meal. I still have trouble finding my words. More and more frequently, I use a cane to walk to maintain balance. I use a wheelchair when a lot of walking is required, like in museums or airports.

Since my body cannot naturally detox molds and toxins it comes into contact with, I need to live in a completely mold-free environment. This means that I have to conduct specialized mold tests in each space I spend time in so that my body isn’t further harmed by the toxins present. The test for my current apartment came back positive for mold, so I am in the process of moving out and into a newer build. This means that my rent has increased drastically, and I will need to purchase dehumidifiers, specialized air purifiers, and humidity indicators for each room. We will likely need to hire a company specifically for mold remediation for our new rental home, since it is nearly impossible to find a space that is 100% mold free in Portland (trust me, we’ve tried.)

This is an extreme financial commitment. I have already spent all of my money on unexpected treatment and graduate school. It is impossible to financially plan for chronic illness, as we never know what will work, how much more I will need, and what it will take. My parents are still working, and fortunately have savings, but we were not prepared for this financially. As uncomfortable as it is, I am at a place where I am reaching out to my community for help.

Anticipated Costs:

With any financial ask, it is my responsibility to demonstrate the exact costs of what all this will take. Here is an outline of my immediate financial needs:

PC infusions: Average of $655 / visit: 80 visits ($655 x 80) = $52,400

Colonics (1 per 2 IVs) = $4,000

Airdoctor air purifier: = $1,000

Mold tests for living spaces = $1,000

Mold remediation = approx $2,800

Approximate Total = $61,200

This is Hard.

It is always hard asking for money.

I sit here completely unsure of how to express enough gratitude to my community who has shown up for me so much already. They’ve brought me food, sat with me in times of grief, took my dog for walks, supported me through school, literally held me up. Cried with me, laughed with me, learned with me. I am constantly in awe of the people around me.

And I put this financial ask out into the world trusting that only those who can give will give. I know that so many of us are burdened by systems that were not built for us. I know that so many of us are still recovering from the havoc that Covid-19 had on our entire world. I know that there are so many ways to provide support, and money isn’t the only way. But it is the hardest thing to come by right now, and so I write all of this down here. I will keep going, even on the hardest of hard days. And I wouldn’t be able to do it without the people in my life, I know that.

Thank you for reading.

PS: If you have any questions about any of this, I want to make myself available to provide explanations and answers. That being said, I might not always have one. Or, I might not have the energy. I do know that the people around me may be able to help with that. But I do hope you reach out, just with the understanding that it may take a bit of time for me (or someone next to me) to respond. <3