Lyme Story

The Long Version  >> Click here for the short version

When I was young, I remember wondering what it would be like to develop a serious disease or illness. For some reason, it wasn’t an idea that scared me, but rather intrigued me. Strange as it sounds, deep down, I expected that illness would be a part of my future story.

Despite this hunch, I had a relatively normal childhood. I had three siblings with whom I spent a good deal of time outdoors. I enjoyed theatrical arts more than sports. I did play sports, however, during which I experienced a couple of minor injuries. At the end of the day though, I had no reason to believe my body was abnormal in any way whatsoever.

My current doctor told me something I hope to never forget: “No one can doctor you better than yourself.” Valuable as this saying is to me now, I wish with all my being that someone would have told me this many, many years ago.

The first abnormal thing I noticed about my body was when my periods stopped right before I was entering college. Like many of my peers, I was put on the birth control pill by my OB/GYN. Unlike my peers, I was not sexually active. It was simply my doctor’s temporary solution to my lack of periods.

I tried several different varieties of the pill for a few years, and ended up really despising it as time went on. I was frustrated going to doctor’s appointments, and repeatedly being questioned: “Are you sexually active?” Every time this question was proposed, my answer was no, and every time my answer was no, I was met with disbelieving eyes. At times, the nurse would have the notion to question me even further. At the same time, I was emotionally unstable (likely due to unbalanced hormones), and experienced various side effects including acne and weight gain. Because of my unfortunate experience during this part of my life, I decided to stop the pill altogether. This proved to be an equally unhelpful experience. I felt stuck.

During my first year of college, I observed myself losing focus one evening when I was reading for a film class. Or at least, I was trying to read. I was alone in an open room, with no distractions; yet, every sentence I read seemed to slip through my brain unaccounted for. I tried using a highlighter, tried whispering the words aloud… still nothing seemed to sink in. I felt so stupid. And anxious. How was I ever going to pass the upcoming test if I couldn’t even understand what this simple book was saying?

Absorbing and obtaining information became a consistent occurrence, forcing me to work extra hard. Not just in school, but socially as well. I would often “not hear” people when they were talking to me. I knew they were talking to me, but I would only catch the first half of their sentences. As they would finished their phrase, I was caught playing catch up, still trying to understand the first half of what they had said. To be honest, I would usually pretend as though I did hear them, although many times I had to ask for them to repeat themselves. This was embarrassing for me, and I’m positive it was frustrating for them as well. Also, I found that I was extremely forgetful for such a youthful woman. I remember this frustrating my parents quite a bit. They would tell me something as if we had already talked about it in the recent past, such as “So what time will you be meeting us this weekend?” My mind blank, I would cluelessly ask them, “What do you mean?”. In response, and in confusion themselves, they’d tell me I had already told them a week ago that I was joining them for a social event.

Regarding these strange experiences, I somehow convinced myself that I was fine and nothing was wrong. I did graduate in the top 10 of my high school, did I not? Blinded by the potential problem, I never discussed these observations with anyone.

Meanwhile, I started experiencing intense pain in my lower abdomen. The pain started to appear every now and again, but over time, developed into a very regular event for me. It forced me to miss classes and work. I have bad memories of frequently curling up in bed in the fetal position, crying — too miserable to do anything. Doctors said that it was probably nothing. I was also told it was likely due to stress. I didn’t know where to turn; I started wondering if I was going crazy.

My grandma was the closest family I had during college, as she lived in the same city. At one point, I shared some of my health struggles with her. She told me she had a genetic disease known as Polycystic Ovarian Syndrome (PCOS), and encouraged me to look into it further. Given this information, I thought I was on the road to better health. I quickly learned I thought wrong. And here was where I began to question the mainstream health industry. Doctors performed an ultrasound to investigate my ovaries — found multiple cysts — told me “you probably have Polycystic Ovarian Syndrome” — but they never diagnosed or treated anything. I was still referred to the birth control pill.

The same doctors also sent me to a gastroenterologist, thinking that my abdominal pain was more of a digestive issue. I underwent a CAT scan and was given a prescription drug. The verdict after this failed to help my pain?I was told to simply eat more fiber.

Aside from my hormonal, “woman problems,” I started noticing some other strange things about my body. I had “random” (but common) stabbing pains around my rib cage. My primary doctor told me random body pains happen to everyone, and they’re a natural part of life. I would also experience random pain in my hip and in my knees. I thought this might just be related to a minor knee injury from high school track. I shook it off as irrelevant, and never saw a specialist for it.

Then came the headaches and migraines. I did see a couple of specialists for this. (By “seeing,” I basically mean that there was a 5 minute one-sided conversation after sitting for 20 minutes in the waiting room. And I wasn’t the one doing the talking…) They tested my neurological senses by having me perform DUI-like tests, and from these, figured I was healthy and normal. The migraines, they said, were probably due to stress, and told me I could take an over-the-counter drug such as Aspirin.

Soon enough, I couldn’t remember what it was like to not have a headache. Migraines were like a sour dose of unwanted reality. On one occasion, I remember being so sick (with a migraine, nausea, and abdomen pain), that I called my parents in tears. They came to pick me up for the weekend so I could rest at home. I was grateful for them by gracing me with such care, yet I was also furious. “What is wrong with me?,” I wondered while desperately praying for help.

Time passed and four years of hard work paid off: I graduated from college with a Bachelor of Arts degree in Digital Media. I moved home to live with my family until I could find a job. Seven months later, I landed my first real-world job as a video director for a church. Four months into this job, I got engaged to the love of my life, Jonathan. Things seemed to be on the up and up. With a self-directed healthy diet and exercising through yoga, I busied myself to the point of forgetting most of my health problems.

Being newly-wed to my best friend brought me so much peace and joy. I anticipated life together, not as perfect, but certainly as a wonderful journey. A few short months into marriage, Jonathan and I discovered we would soon be parents! Life got a little busier as we attended pregnancy classes and read baby literature. Then, at 16 weeks of pregnancy, we were hit with the unexpected. We lost our first child through a late-miscarriage. All of a sudden, life seemed very cruel and unfair. We had just seen our baby alive and healthy during an ultrasound days before. We had just shared the good news with family and close friends. Our doctor told us we had a 5% chance of miscarrying. How could this have happened?

One year after our engagement, we were attending our daughter, Alanna Bea’s, funeral service. Something I wish no parent should ever have to experience. To our horror, we had to go through a similar experience again, 14 months later, when we lost our second baby, Roen Star. We found out we were carrying him on Mother’s Day. We lost him on Father’s Day.

During our early years of marriage, Jonathan and I found ourselves involved with a beautiful new friendship to a married couple we had a lot in common with. They provided us with graceful, listening ears and evenings of laughter in a no-strings-attached environment. The wife, we soon learned, was struggling with a chronic illness called Lyme Disease. As I grew closer with her and learned more about her health complications, I started growing suspicious again about my own health.

I still remember the morning clear as day: Jonathan was trying to get me out of bed in our small, studio apartment. Like every other morning, I felt groggy and my legs felt like lead. As the minutes passed, he grew a little impatient. “It’s time to get up,” he told me again, probably for the tenth time. Finally, I started entering into the real world, the world he was in and not the dream-filled world I had been stuck in. “I don’t feel well,” I told him. Without skipping a beat, he looked me straight in the eye and asked, “Kristin: Do you ever feel well?” I wasn’t expecting this question. I had recently been pregnant, having the excuse of morning sickness. But now, what excuse did I have? I felt nauseous and my head felt as if it were in a vise. “No,” I answered, “Come to think of it, I don’t think that I ever do feel well.”

This is where we began our quest for a good doctor. Someone who was off the beaten path. Someone who would listen.

Jonathan was the first person to lead me in this new direction. The second was my friend who had Lyme Disease. One day as we were discussing various Lyme symptoms, she told me that miscarriage is a common threat because the Lyme bacteria can get to the baby. Something clicked for me then and there. “I want to be tested for Lyme Disease,” I told myself. I didn’t care what it would cost, I just knew I wanted to be able to use it as a factor in our search for answers.

With a new sense of determination, I started with my primary physician, asking her to order a test for Lyme Disease. She agreed to do this and ordered an ELISA test (routinely done in the U.S. before a Western Blot test is considered). I was happy to finally be making progress. In short time, the ELISA test came back negative. Apparently, I didn’t have the disease. However, thanks to my friend who had been seeing a Lyme Literate Physician (LLMD), I wasn’t convinced and knew better than to stop there. Without the professional permission to do so, I was starting to practice the idea that “no one can doctor you better than yourself.”

After months of being on the waiting list, Jonathan and I started seeing a LLMD. Based on my symptoms, this doctor told us she was 90% sure I was dealing with Lyme Disease. We thought this was a rather bold theory, but were glad to finally be seeing a Lyme specialist — someone who knew about the complications of Lyme. We went ahead and ordered a Western Blot test. This Western Blot test came back negative. Still, she said she was suspicious, and proceeded to order another test. Unfortunately, however, we didn’t feel comfortable at this clinic; personal boundaries were crossed, and we felt uncared for. It was time to keep searching for a doctor.

Now, Jonathan is really good at researching things online. If I want to look something up online, I can be stuck for hours reading literature that brings me close, but not close enough, to the subject I’m wanting to learn more about. Meanwhile, he can find helpful results in just minutes. I’ve learned to use these skills to my advantage. When it came to finding the right doctor for us though, I didn’t even have to ask him to search for me. He just took control of the matter, and even called them for me. Again, we were put on a first-appointment waiting list that would last months. Leading up to the appointment, I was full of anticipation. Would they be right for us? Would he (the Lyme specialist) be compassionate? Would he find out what’s wrong with me?

Around this time, Jonathan and I decided it was in my best interest to leave my physically-intense position as a videographer. I enjoyed the nearly 4 years of experience I had while on staff at the church, but felt led to pursue my own video business.

Because I had recently been diagnosed with clinical depression, he took an extended leave of six weeks so we could rest together during this pivotal point of transition. An old pastor friend connected us with a wonderful ministry in Georgia. We rested, went on picnics by beautiful waterfalls, enjoyed time together, and talked through the hardships we had faced in our few short years of marriage. Toward the end of our leave, we traveled westward, to Seattle, to visit with our close friends who had recently moved out there (the same couple mentioned before).

Six weeks passed by more quickly than we’d have wanted, and it was back to reality — a new reality, for me. I was really looking forward to running my own business, managing my own schedule and being a housewife. It was a step toward my dream “position” of being a stay-at-home-mom.

Back home in Madison and settling in to a new apartment, the day of our first appointment with the new LLMD finally arrived. I was nervous, but excited. It was a 5-hour appointment, and my head definitely hurt more after it (so much information to take in!) The visit was very different from your typical, intimidating doctor’s office with flickering fluorescent lights. The doctor was absolutely compassionate, greeting us with hugs and spending an hour just to listen to my story in an intimate conference room with couches. The environment, complimented by the calm snores of the office dog, put me at ease and assured me this was the right doctor — finally.

During this first visit, my new doctor was ready to clinically diagnose me with Lyme Disease, based on my symptoms alone. To help him in his diagnosis, he ordered about 35 blood tests. Among these was another Western Blot, sent to a lab called IGeneX which specializes in dealing with Lyme Disease. I scheduled a follow-up visit for 8 weeks later. A nurse told me, “We’ll call you if any of the test results contain significant information.”

In the weeks following this appointment, I found myself more busy than ever in regards to my health. It was clear that my health was becoming a full-time job for me. I spent hours every day reading paperwork about Lyme Disease and nutritional health, ordering medication, calling insurance, etc. etc. etc. As the weeks passed, I forgot about the possibility of receiving any word from my new doctor’s office. Then, one day, I received an unexpected voicemail:

“Hi Kristin, this is one of the nurses calling from your doctor’s office. I got your email, and Doctor does say that you can occasionally have goat and sheep products. I just wouldn’t do it on a daily basis…” (She continued to cover the remaining questions from an email I had sent.) “And last of all…” ‘And what?,’ I wondered. She answered all of my questions.  “…I did want to let you know that your Igenix came back, and it did come back Igenix positive for Lyme.” My jaw dropped here. “That is reportable, so I will be sending a report in to the Public Health Department. You currently are on treatment for that though, you are on Samento, which is a Lyme treatment, so at this time, not changing anything. When you come in for your next appointment, he probably will be adding antibiotics at that time. If you have any questions, call us back at the office. Thanks, bye.”

The next few hours went by so slowly as I waited for my husband to come home from work. This was big news to share with him — we finally had an answer! Even still, because of my friendship with a couple of Lyme sufferers, I knew better than to think this was the end. If anything, it was simply a start to a whole new chapter.

When it came time for my follow-up appointment, I actually did not get put on antibiotics because certain test results revealed that my immune system needed work first and foremost. It had been under attack by Lyme Disease for so long that it was now hurting me by causing internal, self-inflicting damage. I was also clinically diagnosed with some of Lyme’s co-infections: Babesia, Ehrlichia, Rickettsia and Bartonella. Furthermore, a blood microscopy exposed several more issues such as parasites and candida.

Over the course of the next few months, as I continued with natural treatment and appointments, I gained hope that perhaps I would be feeling better soon. Before I could get used to this thought, however, I did start taking antibiotics. And “better” completely disappeared from my vocabulary. I felt terrible. I mean, I had already been feeling terrible, but this was just worse. I didn’t think things could get worse, but oh — how wrong was I about that!

In case you are unfamiliar with how Lyme Disease works, there is a valid reason to why I feel worse during treatment than I did previously. When the Lyme bacteria is attacked by medication, it kills the bacteria, but the bacteria doesn’t just evaporate. It’s still within my body. Taking it a step further, the bacteria contain toxins which are released as they die off; this is what causes the heightened symptoms. That being said, it is critical for me to intentionally detox my body to rid it of these harmful agents.

Not long after starting antibiotics, Jonathan and I found out we were pregnant a third time. If you are empathetic at all, you might be able to imagine the emotional roller coaster this happy news brought. We were excited, but also frightened beyond belief. In some ways, I didn’t want to believe I would make it full-term because (as I had learned from my past), it is harder to let go after becoming attached. I continued on a single antibiotic under the tactful care of my LLMD, who at the time had successfully treated 35 pregnant women with Lyme.

Sometime between our first and second loss, we had started seeing a Natural Family Planning Practitioner who diagnosed AND treated my PCOS, as well as discovered some critical information about my hormonal imbalances. He had gained my trust and to this day, we are so grateful for his care. He directed me to the correct medication and supervised the use of bi-weekly progesterone injections during pregnancy.

About half way through the pregnancy, we moved from our homeland, Wisconsin, to the Seattle, Washington area. We found a group of midwives to deliver the baby at a local birth center. Five days past the 40-week mark (April 3, 2015), I went into labor and gave birth to our son, Gunther Sterling. What a happy, joyous day!

Gunther was tested for congenital Lyme through IGeneX; three weeks later, we received a negative test for our dear son.

As I felt worse after starting antibiotics, I also feel worse since having given birth. I’ve been able to maintain an herbal treatment regiment since Gunther was born, and he is exclusively breastfed (a decision I feel really good about). I am meeting with the same LLMD via phone consultations; he continues to change a few things here and there, in hopes of seeing improvement, although there haven’t been signs of major improvement to date. Some days I am truly discouraged and weary.

And this is where I am today, as I try to form my health history into a comprehensive story. I certainly am glad to finally be on this side of things: having a diagnosis, and going through treatment. At the same time, I’m incredibly frustrated that it took something close to 10 years to get here. I’ve learned so much about our health systems in America, it honestly makes me sick to the stomach to think about it. Luckily, I do have a wonderful primary care physician who is willing to work with my Lyme Specialist (this is very rare, due to political controversies). But overall, I’ve found that my health care’s mission statement was completely opposite from what they claimed. When I wrote to them explaining my situation, asking for full or partial coverage in seeing my Lyme specialist, they wrote back denying all coverage. They didn’t show any remorse for my sickness or trouble finding answers from their doctors for ten years. Honestly, it seems they didn’t even read my letter, with the exception of skimming to find the sentence that asked for coverage.

Unable to maintain my video business, I’m now focusing 100% on my health and my baby. Some days I make progress; most days I am forced to rest, too sick to do anything. At one point, I tallied up the numbers to see how many Lyme symptoms I have: a whopping 52 out of 70 (74%). My loving, supportive husband works full time, and in addition takes care of our household. We are unsure what the future holds — unsure how long it will take for my health to improve, and unsure how we will be able to afford things as we’re having to pay entirely out-of-pocket.

One of the hardest things about my own personal struggle with Lyme Disease is that it is an “invisible illness.” Despite how I may feel on the inside, I look fine on the outside. I couldn’t count the number of times I’ve heard, “Well, you look great!” from people who know that I am sick. Truly, they have no idea. Under the make-up and the surface, friendly smiles is a young woman whose body is seriously undergoing a war. A war spread throughout the entirety of my body, from my organs to my bones to my nervous system. A war involving countless spirochetes and other enemies, including bacteria known as co-infections, parasites, and yeast. A war started by a tiny bite from a tiny, little insect, who-knows how many years ago.

3 thoughts on “Lyme Story

  1. I am sorry for your illness and your losses. I suffered a stillbirth at 28 weeks. I had leukemia in my 20s. I hope you are feeling better soon. It stinks looking good when you feel like garbage. XOXOXO Many hugs, prayers, and healing vibes.

    Liked by 1 person

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