The long journey of Lyme
Autoimmune diseases, navigating the health care system, and my personal experience with Lyme
We interrupt your regular travel programming to talk about something totally different, but this is my space so I’ll do what I want :)
It was only a bug. It was only a bug! In my head that came out to the tune of Mr. Brightside. I was sitting on my couch, with 7/10 intensity electric shocks shooting out from my foot every 2-3 seconds, trying to figure out how I got here.
It was August 2021 and a few months earlier, in late May or early June, in the midst of a lovely, celebratory "post-COVID" summer, I must have gotten a tick bite. I say must because I never saw a tick, and I never got what they described as the textbook bulls-eye rash. What I did get was a very red, inflamed half-moon on the top of my foot, with the seeming "center" being just at the crevice between the base of my third and fourth toes. Growing up in a family of doctors, I tend to be fairly blase about what my Dad would call "flesh wound" injuries. So despite an angry looking rash, I waited a day or two to see if it would resolve and then finally went to urgent care. They diagnosed it as a staph infection or a strep infection and gave me a Z-pack and figured it would go down. It did go down, somewhat, only to re-inflame a week or two later and require another bout of antibiotics. Eventually, after I believe 10 days of antibiotics, it seemed to be a resolved issue and I went back to my life as normal. This was the beginning of July.
A few uneventful weeks passed, at which point I developed incredibly sharp shooting electric pains in my foot. It was debilitating. I could only sleep if my foot was actively on ice, and as soon as the ice pack warmed up I would awake from the pain again, so I slept in 90 minute cycles without ever really sleeping at all. It seemed to get worse at night, whether because it actually got worse, or because there was nothing else to focus on. I could hardly weight bear and the strength in my entire right leg started to deteriorate. I saw an infectious disease specialist, a rheumatologist, a neurologist who diagnosed me with complex regional pain syndrome. He put me on a high dose of gabapentin which finally started to relieve my symptoms enough that I could walk and sleep a little and seemingly function. But the questions remained. Then in October, my right knee became incredibly swollen for no reason I could discern, at which point I saw an orthopedist and at the urging of my Dad he tested me for Lyme. On my second visit with him, he took 55 ccs of fluid out of my knee (about a 1/4 cup). On my third visit, another 35 ccs. On my fourth visit, another 20. Throughout this I was on a month at a time of doxycycline, ending up with 3 months in total, trying to do PT through the extreme stiffness, and reading the Lyme horror stories of people who never work again, never recover.
What I know now is that this symptom progression is relatively common for Lyme cases -- starting with a rash and some symptoms of general malaise, progressing to neurological symptoms and finally to significant joint swelling. More worrying, however, is the ways in which Lyme can seemingly be a trigger for larger autoimmune issues that can be lifelong. There's significant controversy over what is sometimes called Post-Treatment Lyme Disease, or "chronic Lyme" as patients continue to report symptoms like pain, fatigue, and brain fog long after their Lyme has theoretically been resolved. This plays into our worst tendencies as a society, in my opinion, to minimize (often women's) experience as in their head or in their heart in some way. Doctors will say they are just depressed or anxious and that a positive mindset, meditation, and exercise can help heal them. I have no doubt that a positive mentality can help in some instances, but if my experience with Lyme is any indicator, there were some days where the pain was so consuming that getting to a positive mindset was all but impossible.
Because I'm healthy and privileged, this was the first significant health issue that I had ever had, but chronic illness and autoimmune issues are exploding across the United States right now, disproportionately affecting women. The numbers range broadly, from a 3% to 12% to 24% increase across the country in the last 10-20 years, all the way to one piece of research that indicates that "one type of autoantibody called antinuclear antibodies increased nearly 50 percent in the U.S. in less than 30 years," not simply because we are screening more people.
Not only are these lifelong illnesses that can flare up and recede, but so little is still known about their causes and treatments, that they can feel like a damning sentence. It's nearly impossible to describe the tsunami of feelings that comes with chronic pain if you've never experienced it. The physical pain is really just the start of it. Some days the physical pain is more intense, some days less intense, but the undulation of experience, for me at least, didn't provide any relief. Instead, on days where I was in less pain I was dreading more pain that I felt was bound to come. I created scenarios in my mind where the pain lasted forever, where I could never exercise again, where my life was forever changed, and I certainly sunk into a mild depression.
Moreover, there's a social expectation in the US that major illnesses like this should teach some sort of lesson. Many cancer survivors talk about feeling grateful for their cancer in some way because it helped them to appreciate their life anew. Though I'm sure that some patients of autoimmune or chronic illnesses do feel that way, to me there was no revelatory "lesson" here. Yes, I realized the privilege of health insurance and the number of specialists I was able to see, but I also realized more than ever the extent to which we are alone in the US healthcare system, with doctors focused on acute treatment solutions and not the complex web of symptoms that may never have an answer. Yes, I’m grateful for the days I had back then that were good, and a system that eventually got me to an answer. and track down my own healthcare in a way that finally got me to something of an answer. But in the middle of it, there was no lesson. I have dreams and plans for life that don’t include feeling like you physically can’t get out of bed. All I could do was to mourn the experience, and take it day by day.
I'm lucky to, at this point, feel as if my Lyme is likely beaten. I am still doing intensive PT and strength training for a leg that is weak (and has two torn meniscuses, potentially from the weakness I suffered for the 1-2 years of acute issues). I learned however, through the myriad of tests, that my ANA is also high, and so no one knows whether or not this is simply a period of recession only to have an autoimmune reaction flare up again later. I don’t know that I’ll be able to run again. I don’t know if I’ll be able to comfortably squat again. I worry every time one of my joints is sore. Some dreams might die, and that doesn’t have to feel good.
This is terrible! If there's one thing I've learned over the last 4 years of my and my immediate family's run-ins with the healthcare system -- childbirth, infant failure to thrive, appendicitis, cancer, MS, emergency C-sections, etc -- it's the enormous and unfair benefit of having a doctor in the family who can advocate for you, force a second look, and call in favors to find the right provider. Each of the stories I could tell above would have ended completely differently if I wasn't married to a doctor, which really highlights how poorly the system works without assistance.
Beautifully written and beautifully said. And you are so right about our health care system and how difficult it is to maneuver. I'm so glad you eventually were diagnosed, treated, and are feeling better. I too had a bad case of lyme disease, though I had the typical bulls eye and was diagnosed after two weeks. I had an allergic reaction to doxycycline however, and had to take another antibiotic. I experienced mild chronic symptoms, but after working with a naturopath and put on a regimen of certain supplements, the symptoms went away. Lyme is a scary disease and deserves a lot more exposure and research.