Until just recently, I’ve been thinking of October 19, 2014 as the day I got sick. I woke up that morning without any hearing at all on my right side. A few weeks later, I started having heart palpitations, trouble breathing and what I assumed to be panic attacks. Then terrible neck, head and jaw pain. Then trouble sleeping – to the point where I’d be awake for days even weeks at a time. From there, things only got stranger. And over the course of weeks, I developed a multi-page list of physical and cognitive symptoms that would change severity and combinations day to day.
A formerly very fit and capable person, I was just recently doing crossfit 5x per week, spending weekdays at my high stress, high output Microsoft job and weekends biking, hiking and socializing with no trouble at all keeping up. Suddenly I found myself nearly housebound, unable to drive and with difficulty performing even the most basic functions of living. What happened??
I was determined to find wellness again, and started visiting doctors. In the months that followed, I saw 13 different doctors. ENTs, neurologists, chiropractors, primary care physicians, a naturopath, a specialty dentist and an endocrinologist. Most were, at best, left scratching their heads. At worst, they told me it must all be in my head.
Over the course of 6 months, I was diagnosed with:
- sudden sensioneural hearing loss
- a vestibular disorder (suspected viral labyrinthitis)
- TMJ disorder
- A misaligned “atlas” (subluxation)
- panic disorder
- generalized anixety disorder
- autoimmune thyroid disease (hashimoto’s disease for sure and maybe even grave’s)
- paralyzing migraines and “ice pick headaches”
- muscle spasticity
- unexplained “neuropathies” (transient numbness and weakness of my limbs and face)
- vision changes including: astigmatism, “oscillopsia” and light sensitivity
- chronic fatigue syndrome
At one point, I began to agree with the doctors that maybe I was “just stressed” and sought the care of two mental health practitioners. After extensive interviews and a few visits, each separately told me that based on my descriptions of events, it was clear I was not overly anxious. Neither believed these symptoms were originating in my mind. In spite of their clearances, I accepted my PCP’s strong suggestions to begin antianxiety medications. 5 days on those, and everything was SO much worse. I immediately discontinued them and continued to look for physical causes of this distress.
With each doctor, I received a new diagnosis. And treatment. But the treatments for these supposed conditions haven’t really worked. I’ve kept pressing doctors, asking why things aren’t responding the way you’d expect. And, in my eyes most importantly, why did I get so sick in so many different body systems all at once. They’d get irritated with me for even asking. I guess I’m meant to believe I was just unlucky.
But I don’t believe in luck. So I kept pressing. Finally today I have answers to each of these diagnoses – and looking back, maybe even 21 full years of strange and odd health occurrences, including my MS diagnosis 10 years ago. It turns out October 19, 2014 isn’t the day I got sick. It was just the start of a new chapter in a very long story that actually dates back to about age 10.
I have tested positive for late stage Lyme disease. Contracted as a wee kiddo, this persistent bacterial infection that has been replicating in my system every 28 days for OVER 20 years. It hangs out in my fatty tissues, sometimes doing damage, sometimes not. My immune system sometimes sees it there, and mounts a defense against the bacteria, which also does damage to the tissues themselves (hence my diagnosis with so many autoimmune diseases).
As a youngster, it caused horrible disabling migraines with aura that I’d get every few weeks from the time I was about 11; I was 17 when they mysteriously vanished. It also around age 11 that I also developed a case of asthma that lasted only about a year. At 13, it moved into my joints and I was diagnosed with arthritis, beginning years of PT, pain meds and even surgery. Even untreated joints eased after a few years and we called it a lucky break. When I was 15, it impacted my teeth; without any change in dental habits at all, I kicked off a period of years that resulted in at least 2 fillings per tooth and a root canal. You guessed it, within a few years my teeth were back to their well-behaved selves with no change in behavior from me. In my early 20s, it manifested as carpal tunnel which, in spite of being a lifelong illness, went away on its own a few years later. At 21, the bacteria moved into the myelin coating the nerves in my brain, and I developed neurological symptoms and was (maybe mis)diagnosed with MS that was supremely active for 5 years before quieting down. When it moved into my thyroid gland last year, I developed Hashimoto’s disease. My inner ear – sensineural hearing loss. My vestibular system – labyrinthitis. My muscles – fibromyalgia. You see the pattern: As the bacteria moves and hides and evades, my symptoms and conditions change. And over the years, I move onto the next health hurdle, the next doctor, the next “unrelated” diagnosis and treatment without getting any closer to the underlying issue.
Until this year. At the end of 2014, it invaded so many different body systems and reactivated so many of these old conditions, that I couldn’t deny something systemic was clearly plaguing me.
This course changes now. I know what the underlying issue is now. And I can fight it. It’s my personal belief that if I can eradicate this bacteria, I will cease to have these conditions. Or at least stop developing new ones.
But honestly, I don’t know if eradication is possible. Especially after such a long infection. There’s little research here, very poor testing mechanisms to determine a degree of current infection, and a whoooooole lot of differing opinions. But I know this – fighting a baseline infection can only get me closer to health.
This is a long road ahead. Physically, emotionally, financially. It’ll all come with a side of politics, a medical system that doesn’t recognize this fight, and I’m sure some folks telling me I’m crazy.
But this is my journey. And I am finally pointed in a direction that makes sense to me. ONWARD.