Lyme disease…and another thing!

Below is a story I’ve been meaning to write for a long time. It details my experiences with Lyme disease and, as the title might suggest, a few other things. For anyone who has ever had Lyme or another invisible illness, if nothing else, I hope this helps you feel less alone.

 


 

“It sounds to me like you’re just depressed,” my doctor said, gazing at me placidly from her desk.

Yeah, no kidding, I thought. But what else?

The sterile paper crinkled underneath me as I shifted uncomfortably on her table. “Are you sure?”

“I think so,” she assured me. “Depression can be a tricky thing that presents a wide array of physical symptoms.”

Sure, maybe the severe fatigue, but causing my hands and feet to go numb for hours at a time? Heart palpitations? Irrational panic? Confused speech? Crippling joint pain? Brain fog? Her diagnosis just didn’t add up to me, but I didn’t push any further. How I wish now that I had.

It was the middle of a somewhat mild July in 2017. I passed another six months of silent hell before I was eventually diagnosed with Lyme.

In the meantime, I accepted her referral to a therapist, but refused her urging to put me on antipsychotics, which I couldn’t believe she’d pushed after a ten minute intake assessment. My insurance company had recently changed, and I’d had to leave the practice of a doctor I’d loved. This was my first time ever seeing my new doctor, and I left her office upset with a sense that I’d been treated irresponsibly, but who was I to argue?

I followed her treatment plan, seeing my new therapist on a weekly basis as months passed and my symptoms only worsened. After about 90 days when I started literally falling to my knees at work from muscles spasms and pain, I booked another appointment with my doctor. This time, I was determined to stick up for myself.

Before I went in, I read up on my symptoms. I pointed out that I had a history of anemia and suggested that my ailments could be indicative of Lyme disease. My heart thudded in my chest as I felt her about to dismiss me before she even opened her mouth.

“These are expensive tests you’re asking for,” she warned. “They’ll take weeks for me to order. I just don’t really see any pressing reason to go through the trouble.”

I wanted to scream at her—make her understand how much I was suffering and how frustrated I was at her lack of support and care. Instead, I swallowed my anger and let it fill my cheeks.

“Please,” I begged as I pushed back the tears threatening to escape my sunken eyes. “Please, can we just run some tests?”

Finally, she reluctantly agreed to at least test me for Lyme using an ELISA test. When it came back negative, she did little more than shrug her shoulders. The gesture that she meant to say “I told you so” felt more like a middle finger.

That was the last time I saw her. I left the therapist she had recommended and tried two more before finding one who I felt understood my goals for my mental health. While my new therapist was immeasurably helpful for me emotionally, my physical symptoms grew worse still.

In January of 2018, I couldn’t take it anymore. I gathered up my insurance information and pounded down the door of my old doctor, ready to beg her to take me back. My insurance had changed again to something within her network. I only had to pray that she was accepting new patients.

I should note that this was a woman who once smelled strep throat on my sister. Seriously. Upon walking into her office, this doctor sniffed the air and said with total confidence, “You have strep. We’ll do a throat culture as a formality, but I can smell it on you.” She turned out to be right. That was one of many miraculous diagnoses I’d seen her make. I had every reason to want to see her again.

She ran a myriad of tests on me without a fuss. A week later, she sat me down with a packet in her hands—discouragingly thick.

“Are those…?”

“Your test results,” she clarified, nodding. “I’m not sure how you’re still standing.”

She read them off to me one by one: mono, anemia, polycystic ovarian syndrome, and chronic Lyme.

At first I felt she might’ve made a mistake, given the fact that I had already been tested for Lyme. The Western blot test, she explained, was much more accurate than the ELISA test I’d been given. Not only that, but at the time of my first test, I had been taking minocycline, an antibiotic that I had been prescribed for acne. My doctor explained that the medication can actually cause Lyme to “hide”, making an already sneaky disease even harder to test for.

As angry as I was that nobody had caught any of this sooner, I was just happy to hear that I had a legitimate diagnosis (or four) and a plan. I started treatment immediately with the understanding that things were about to get worse before they got better.

Those who know me often joke that I act like an 85 year old woman, and for the first time at 23, I looked it too. The slew of medications I’d been given made me move as if I’d aged 60 years. On days when I could walk, I’d shamble around the house like a ghoul, my eyes glazed and unfocused, looking for something to eat that wouldn’t make me vomit. I lost 15 lb. in two months.

Despite the misery of the treatment, as the bottom of my pill bottles slowly became visible, my mood improved. It was almost over.

I couldn’t wait to get my doctor’s call with the results of my latest blood tests. My 60 days of hell were up and I would be able to get back to my normal life. Needless to say I was devastated when that was not the call I received.

“Your test results look pretty good, but I think we should do another round of treatment just to be safe.”

Despite my nausea, I stayed on the phone while she explained that just as tests had failed to show Lyme in the past, so could they now. I listened as she gave accounts of people who stopped treatment too soon and ended up worse off than before. When we hung up, I started to cry. Then I threw up again.

The last 30 days of treatment passed like an unpleasant dream. Every day when I poured the pills into my hand I would fight the urge to throw them in the trash. My pain had lessened to the point where I could walk for most of the day, but I still wasn’t well enough to go anywhere. I would pass from the couch to the pantry, gazing longingly at foods that used to bring me joy. By that time, even looking at a box of Annie’s mac ‘n’ cheese made me cry. My comforts were gone. My job was gone. My social life, my pursuit of writing, simple things like going to the gym or having a glass of wine…all of it remained on an excruciating hold.

As I slowly adjusted to the medicine, I regained a small piece of my appetite. I only lost another 5 lb. in the remaining 30 days, bringing the grand total up to 20 lb. I weighed 104 by the time it was all over.

Halfway through March of 2018, I went to a job interview. I explained, not without a certain amount of embarrassment, exactly why I had been out of work for so long, but that I was nearly mended. My now manager looked at me dubiously, his eyes wide even from hearing a watered-down version of the last six months of my life. He looked me over: pale, thin, hunched piteously on the stool before him. Relief flooded me when he told me he’d love to have me on the team, but that if I wasn’t better in the timeframe I’d quoted, I shouldn’t hesitate to push back my start date. I ignored him and shook his hand.

Slow were the steps I took. Small were the bites of solid food. Short were the conversations with my new coworkers. I rebuilt what I’d lost little by little, cautiously optimistic that the worst was behind me.

For anyone who’s ever been that confused and sick for that long, you know the relief you feel when you’re given a diagnosis. It gives you a sense of empowerment, like you’re in control again and the nameless thing that’s been torturing you has been labeled and is on its way out. The thing is, at least for me, I didn’t really feel better until many months later, and even then I still wasn’t normal.

I had persistent joint pain. I would still mix up my words as I tried to speak them and had trouble getting out of bed in the morning. Why?

I read what I could find about other people like me who had lingering symptoms after treating their Lyme. Nobody had answers, mind you. All I found were similar accounts of what I’d been experiencing, crudely dubbed “post-Lyme disease syndrome”.

In September of 2018, another piece of the puzzle fell into place when I suffered what doctors suspected was a transient ischemic attack, or a mini-stroke caused by my new birth control. I was thrilled when they ordered an EEG and an MRI, because since contracting Lyme, I would periodically stop breathing while falling asleep. I was even more excited when I stopped breathing while they had my head wired and I drifted off in the dark room where my EEG took place.

Now they’ll be able to tell me exactly what’s going on, I thought.

Wrong again! The neurologist noted the abnormal drop-off in brain activity associated with my arrested breathing, but offered no explanation or treatment plan. Her recommendations began and ended with taking me off of the birth control that had caused me grief.

A year removed from finishing treatment my health is much better, but not perfect. I’ve had to find creative ways to deal with the chronic pain that never seemed to go away after Lyme. I continue to see a therapist to deal with the depression that I know causes fatigue, as well as the irrational panic that arises whenever I feel something in my body go awry. I’m on a birth control that I think is decently well-suited to my needs. Even though I still don’t think polycystic ovarian syndrome was the correct diagnosis for me hormonally, for now, I’m just happy that the pills I’m on aren’t causing a stroke.

I want to point out that I never got the distinctive bullseye rash that often accompanies the early stages of Lyme. Everything I experienced was invisible. I believe for that reason as much as any other that that’s why it took so long for me to get treatment. Depression is real. Anemia is real. Lyme disease is real, and it can be so much more devastating than most people understand. To this day I’m working through the anger that escorts feeling cheated out of years of healthy, pain-free living.

I wrote this story down with several goals in mind. One, if anyone reading is suffering with undiagnosed health issues and recognizes some of the symptoms that I experienced, I’m thrilled. Though it’s starting to gain traction, there’s still too little literature available detailing the experiences of people who contract Lyme and its aftereffects. What’s worse, there’s not nearly enough research being done to continue developing treatment options. My hope is that the more we talk about it, the further we’ll get in terms of early recognition and care.

My second goal is to try and help people understand that as empowering as it is to receive a diagnosis, you shouldn’t latch onto something that hasn’t been substantiated through multiple rounds of testing, especially where Lyme is concerned. There are lots of other conditions and illnesses that can mimic Lyme, and it’s entirely possible that like me, you have multiple problems that need treating. Don’t gamble with any component of your health and accept a reckless, shallow answer just because you’re tired of not having one.

Lastly, if a doctor claims to have a miracle drug cocktail that will fix all your problems after a cursory intake assessment, run. Run like hell until you find someone who is more interested in developing a comprehensive understanding of your health, rather than making a quick buck off of dosing you into the stratosphere.

Self-advocacy is your friend. Gather knowledge, be rational, be patient, and be well.

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