My Journey to Chronic Lyme Disease
Late in 2019, I was diagnosed with chronic Lyme disease after a five-year journey through a labyrinth of doctors and diagnoses.
Let's start by saying that chronic Lyme disease (or post-treatment Lyme disease syndrome (PTLDS)) is not a widely accepted or well-understood phenomenon. That’s part of what makes the condition - diagnosing and treating it - so problematic. Medical professionals disagree about how Lyme disease may be diagnosed. Some argue it may only be diagnosed via testing that indicates the current or past presence of B. burgorferi, while others question the reliability of testing and will also diagnose based on symptomatology. Medical professionals also disagree about how to understand symptoms that persist after the standard Lyme treatment - a course of antibiotics - and thus disagree on the very basis of a post-treatment Lyme disease syndrome diagnosis.
Here’s what I know: I met the CDC criteria for a Lyme disease diagnosis using the Western Blot Lyme disease test. After an appropriate course of antibiotic treatment, my symptoms persisted.
I believe it’s possible to lump this syndrome in with some that go by other names, including Systemic Exertion Intolerance Disease (SEID), and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I do this based on my judgment that all seem to be describing a system that, once overwhelmed by an invader, is rendered incapable of mustering up pre-invasion levels of immune response, and experiences ongoing symptoms. Some of these symptoms are identical to or reminiscent of the symptoms experienced during the invasion, and some are new. And whether this syndrome occurs because the body is still fighting that invader or some new invader, or because the invasion(s) left lasting damage to various bodily systems, is unclear.
At this point, the names aren’t as important to me. While useful, they often serve to divide affected populations, entrenching them in camps demarcated by nomenclature, when that nomenclature isn’t even very robust to begin with. What I am interested in is how we got here, and how we get out.
Note: Please don't take what follows as a comprehensive medical history. I've attempted many interventions that are left out here for the sake of expediency.
About five years ago I started having consistent headaches. I saw a doctor, and he noticed low testosterone. There wasn't really anything to be done at that point, so I carried on.
A few months later, I mysteriously presented with a syndrome known as Rhabdomyolysis, where certain muscles spontaneously break down. The proteins are processed by your kidneys and excreted out in urine, and it can cause kidney damage as there is far too much protein for your kidneys to process. It was incredibly painful, rendering me unable to walk for about a week. My doctor downplayed my assertion that this was Rhabdomyolysis, ordering a protein blood test that took over a week to come back. When it did, he said "It’s Rhabdomyolysis; you need to go to the hospital." At the hospital, they told me that it had pretty much resolved on its own; the time to have been at the hospital was a week prior.
Typically, the syndrome is brought on by excessive exercise (think: the most extreme versions of CrossFit), or some severe interaction with medications such as antipsychotics or statins. I didn't have any of those things. What I did have was a few weeks of trying to ride an older, improperly fitted, steel bike the 7-or-so miles of my commute to downtown Seattle. Doctor after doctor told me they had no idea how I'd acquired this condition, as that type of exertion shouldn't have been nearly enough.
Since nothing I was doing should have caused Rhabdo, I got back on the bike, and I got Rhabdo again. It was milder this time, but unmistakable. It was six months or so before I was willing to get on a bike again, and when I did I bought a much-lighter, modern, road-style bike, had it professionally fitted, and I wouldn't go up hills.
About a year later, I had intense stomach pain while on a retreat with some church friends. I vomited blood. When we got to the ER, the attending physician dismissed it, saying he thought it was a GI bug and I had vomited some “mango juice” I had drank. The blood didn’t look anything like the mango juice, but all we had to show him was the picture. We did an upper endoscopy and found only that my esophageal flap had an abnormality and didn’t seal properly.
Around the same time, a new symptom entered the scene: I started getting recurrent sinus infections. I saw multiple ENTs. We tried antibiotics, which would clear the infection, and then it would come roaring back immediately after the antibiotics ceased. We tried every nasal spray, medicated and otherwise, that ENTs could think of. Finally, we did surgery.
The surgery corrected a deviated septum, scraped out honeycomb-like turbinate structures in the back of the sinuses, and generally improved every structural component they could think of. It's standard to put someone on antibiotics while they undergo a surgery like this and, like clockwork, I sprang a new sinus infection right as the antibiotics ended. The ENT that performed the surgery was baffled. He prescribed a couple more rounds of antibiotics in a weak attempt to help, but eventually told me to stop contacting his office and look elsewhere.
It was during this time that there was a pronounced increase in fatigue and anxiety. I couldn't work long, stressful days anymore. I would be overcome with an elevated heart rate and feelings of weakness, shakiness, and fogginess. As a person of faith, I compartmentalized many of these symptoms into the "spiritual" realm. I pressed into prayer, meditated on scripture, and asked God for help. I did find some relief via these things (who wouldn't find some benefit from quietly centering oneself for long periods of time?), but the effects were transient vs transformative, and I found my ability to work deteriorating. I was leaving work early more and more frequently, often sobbing, both because of the overwhelming feeling of fatigue (I like to call it the "black hole" in my chest), and the growing awareness that my life was falling apart. It didn't help that this was probably the most stressful period of my career thus far as I weathered the storms of being a PM and manager at Amazon, expected to deliver at impossible levels in an environment of all-encompassing ambiguity.
We saw an endocrinologist who couldn't identify any "significant abnormalities" in hormone levels. I was still experiencing headaches, so I was also seeing neurologists during this time, and tried several medications, to no avail. These headaches would sit right behind my eyes, and felt like pressure causing my eyes to stiffen and become painful when pushed upon. At the suggestion of one neurologist, we did a brain MRI, which revealed a small-ish pituitary cyst (about 5mm in size). They called it a microadenoma. A follow-up MRI of the affected area was enough to convince the neurologist and endocrinologist that this wasn't the culprit behind symptoms of either headaches or mood/energy irregularities.
At this point, I'd seen approx. 18 doctors, including one sleep doctor who conducted a sleep study to try identify culprits like sleep apnea. Nothing.
I ramped into a full-on health researcher. I self-diagnosed with Chronic Fatigue Syndrome, because it was the only condition I'd encountered that matched the symptom picture I was exhibiting. I started reading a book called "From Fatigued to Fantastic," and implemented the elaborate protocol described there. I introduced numerous new supplements that were meant to support nearly every one of my body's systems. I identified hallmarks of yeast (Candida) and other fungal overgrowth, and implemented a ketogenic diet to starve them. I onboarded adaptogenic and anti-microbial herbs. I saw glimmers of improvement, and was thrilled to have a framework for taking steps forward. Hope is a powerful thing.
Then I realized that I needed to work with a doctor who could prescribe the final phases of the protocol: long-term antibiotics and corticosteroids. The book's author, Dr. Teitelbaum, recommended finding a functional/integrative doctor who was adept at examining the body holistically, and who would be open to the kind of outside-the-box thinking necessary to make progress if you were at this point in his protocol.
The new doctor we found was a breath of fresh air for us. She was the first doctor that created a space for open-ended exploration of the condition that had debilitated me for several years at this point. She didn't look at me as a single symptom or bodily system, but understood that things had gone haywire at a cross-system level, and helped prepare me mentally for the work it would take to claw back health from where it had retreated. She confirmed the Chronic Fatigue Diagnosis and, in addition to supporting Dr. Teitelbaum’s protocol, brought her own expertise and recommendations to the table to try to identify root cause(s).
It was around here that I started to really tease apart my symptoms of fatigue and anxiety and realized that these were actually physical symptoms, rather than spiritual. Almost any level of exertion was enough to bring about sustained periods of elevated heart rate (not quite tachycardic, but frequently topping 100 BPM), leading me to feel "anxious." Periods of standing on my feet brought a drop in blood pressure. I had to rest for long periods to bring things back to functional levels - sometimes days. These crashes were energetic responses to periods of exertion, especially of the kind I think of as "emotional" exertion, such as increased stress or relational tension. I thought I simply suffered from "sinus infections" brought on by some mysterious phenomena, and that I was an anxious person whose anxiety was exacerbating the problem. Prayer and meditation alleviated things somewhat, but it was becoming clear to me that the issues were more systemic than I had previously considered them.
I suspected everything under the sun: occipital neuralgia, meningitis, anemia, etc. The integrative doctor patiently explained why each, in turn, was not likely to be the explanation for my symptoms, but often ordered tests to assuage my concerns.
Working with the integrative doctor, we identified ongoing issues with my hormone levels that had eluded the endocrinologist's standard tests, especially regarding cortisol rhythms and testosterone levels. We onboarded supplemental corticosteroids (Hydrocortisone), and several other adrenal supports, with incremental improvements.
Through some additional testing, we found that there was mold colonizing my sinuses. We identified markers of numerous infections including: cyclosporiasis, EBV, HHV-6, streptococcus mutans, campylobacter jejuni, candida albicans, acinetobacter, aspergillus, streptozymes, and aflatoxins.
With these results in hand, and with the fact that I'd shown only marginal improvements with other therapies over the course of nine months with her, she agreed that long-term antibiotics (Azithromycin) were the right next step.
I initially felt much better on antibiotics, as I previously had. I had a spike in energy and functionality, and found myself able to work longer and with fewer crashes. I stopped having sinus infections, and and I’ve not had a full-blown sinus infection since. Unfortunately, the benefits to energy and functionality started to fade over the course of several months, to the point where I felt I was more or less back where I started.
It was at this point that the doctor felt she had exhausted the knowledge and resources she had available, and recommended I see someone who specialized in environmental illnesses, as well as Lyme and co-infections.
The environmental doc was the first to suspect Lyme. How she was the first to have it even cross her mind, I'm not sure. Perhaps the fact that I live in Seattle plumb drops Lyme off of most people's radar. And honestly, it's not all that surprising that she suspected it considering it's her specialty. However, she ran the corresponding tests, and I came back positive on the Western Blot Lyme disease test for both the CDC and alternate criteria. That battery of tests turned up some other co-infections, too, that we had missed with the integrative doctor.
Thus started the most recent (and, at time of writing, current) chapter in this health journey. We don't know how I got Lyme disease. I lived in Colorado until I graduated from college, and our best guess is that I contracted it roughly 10 years ago when I resided there, as it is at least plausible to find Lyme-carrying insects in the area.
I'd previously been exposed to sufficient antibiotics that I fell immediately into the "chronic" camp based on my ongoing symptoms.
I'm now rotated through rounds of antibiotics and herbal concoctions. My body's varied and interconnected systems are once again supported using a variety of interventions. Keeping on top of administering the pills and supplements take up a large part of my day and energetic capacity. I get to carry the label "chronic Lyme disease" as a way to explain the system-wide tire fire that is my body. In addition to whatever the Lyme bacterium itself is doing to me, my most persistent co-infection seems to be Mycoplasma pneumoniae. My IgG levels are consistently 3x upper reference ranges, and IgM are 1.5x.
And here I am, about five years into this thing, and I'm honestly not "better." I started seeing a chiropractor. I think it helped significantly with the lingering headaches, and certainly improved neck mobility and stiffness. I don't have sinus infections anymore, though am constantly flirting with sinusitis, especially when not on antibiotics. I have more "good" days than bad days, and the bad days are more functional than they used to be. However, my definition of "good" has had to drop to somewhere above "laid on the couch all day in a debilitating fog, crying." And I suspect that a significant chunk of the improvement is due to the fact that I don't push myself much anymore. I've adopted quiet pastimes like crocheting and playing video games. We don't go out with friends much. We're isolated.
There's a heavy blanket draped over my body's energy systems. If I get myself into stressful situations, my body rises to the occasion, but I can feel my heart rate spike and I know the consequences I'll suffer later, whether it be a few hours or a full day. I have consistent, low-grade fevers. I get body aches and chills regularly. I'm often weak and shaky. My blood pressure and heart rate are erratic, often moving to 130/60 and 105BPM. I have some level of brain fog almost constantly, making it harder to process new information or remember things. I'm not nearly as good at contributing to new initiatives or navigating tense situations as I used to be.
I don't like it. It's not fun. I hate that my wife has had to suffer through this whole thing with me, dealing with the ups and downs. The rollercoaster she's on is as much my own making, me unraveling in emotional responses to my circumstances, as it is the uncertainty of the disease itself. She's been an incredible, stabilizing gift to me, and the fact that she took her vow seriously to love me in sickness brings me to tears.
Here's what I will say: my true and only hope is that God made me for eternity with Him, not to find my fulfillment or identity in this life. Even if, for the remainder of my days, I shadowbox invisible ailments, and there are elements missing of the life I'd desire (kids? not likely), I've been gifted a relationship with God through Jesus. That gift is perfectly satisfying, and all-encompassing. It answers every need I have, though not everything I want. Things I previously identified as needs get to be laid down before a merciful God who made me and knows the heart of my heart. And knowing that God's got everything handled and doesn't need me to be productive or contribute in any particular way in order to accomplish His purposes, I am reassured and provided for: a green olive tree in the house of God.
Living this way, in weakness, by faith without sight, is difficult. It makes it hard to wait for my ultimate hope: heaven. But then that's also where the sweetness will come from: seeing Jesus, my hope, after however long spent on this Earth, longing for Him.
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