Circadian Interruption

Please consider helping me fight my battle against Neuroborreliosis. I am five months into one year of intensive and incredibly expensive treatment. Absolutely nothing is covered by insurance and the expenses have become impossible. As a thank you, I will write you a written thank you card in the mail, and ship you a freshly picked, handmade sea-glass necklace if you request one. Please click the yellow donate button on the top right column. And thank you. 

Part 1: Nobody Down There Will Help You

Part 2:

It's September. I cannot sleep. This sleeplessness looks different from week to week, but every night shares the same common denominator: the apprehension and eventual dread as the day draws to a close and the normal bedtime routines begin, the mute frustration of lying wide awake next to my husband, trying not to move or make a sound, hoping to at least protect his sleep if I cannot have any of my own.

Before long I move out of our bedroom and into the guest room. The walls are a creamy yellow, there's a ceiling fan above the bed that spins languidly through the still warm autumn air. After a few nights it's no longer the guest room, it's my room. Interstitial Cystitis forces me to get up 16-20 times per night, catching splinters of sleep in between.  It would be impossible for anyone to share a bed with me and get any sleep. I make halfhearted jokes to Dave that we're already sleeping in separate bedrooms after two months of marriage. He gives a halfhearted laugh in return.

After a few weeks, the IC pain melts away, transformed into a new set of symptoms. Lyme symptoms are migratory, they come and go and blossom at random into something seemingly unrelated, which is part of what makes the disease so difficult to understand. I'm prescribed the highest legal dosage of Ambien, and that combined with the lack of urgency to get up and pee every three minutes means I can sleep for five or six hours straight. I swallow my pill and watch the world of my bedroom start to loosen around the edges and then bubble away. I even start sleeping next to Dave again, although not for long.

Late September I wake up around 2am soaking in sweat. It runs down my face and chest and pools in the slight curve of my lower back. I kick back the blankets, damp and clinging, and feel a cool draft of air wash over me. The next morning I peel back the fitted sheet to let the mattress top dry out. This becomes a nightly occurrence.  If I flip around, head by the window instead of at the headboard, I can find a piece of my bed that isn't soaked in sweat. This is how I wake up each morning, reversed.

Night sweats are a side effect of Babesia, a co-infection present in nearly all Lyme patients. Babesia is a parasite, a protozoan similar to Malaria that requires its own regiment of treatment outside of antibiotics. It's one of twelve currently recognized co-infections that can accompany Lyme. Patients who are unaware of their confections and do not treat them appropriately do not recover.

By Halloween, the sleeping pills bring no more than three hours of sleep. I'm awake again at 2:30 am. If I take another sleeping pill, I get two more hours. The frustration is getting to be unbearable. I make a rule for myself: if it's after 4:30 am, I'm allowed to roll out of bed and begin my day. Whenever I turn over and see that it's 'morning', in my world, I feel immense relief.
Like the majority of people infected with Borrelia Burgdorferi (Lyme disease), one of my most aggravating symptoms, ubiquitous yet also hard to pinpoint, is hyperacuity. When I'm finally diagnosed in December, I'm nearly gleeful to learn that there's a mechanism to blame behind my growing intolerance of sounds, my sensitivity to light, the way I startle and flash with anger when someone in the cafe drops a cup too forcefully into the dish bin.

And so, like other patients, I begin to view those early morning hours, dark and calm, as the most tolerable and desirable of the day. Feet on the cold floor, I dress and drive across town to Starbucks, often waiting for a few minutes in the driveway as the wipers scrape the first frost from the windshield. Asheville is a notoriously laid back city, most coffee shops aren't even open till 7:30am, but Starbucks, thank goodness, opens at 5am.

I take my coffee back home, climb back into bed with the light on, and enjoy a few relaxing and productive hours of work. Most day I drift back to sleep in the afternoon, waking up an hour or so before David returns from work. I take a shower, hurry to change my clothes and busy myself in the kitchen so that when he walks in the door he'll see me like this, functioning, purposeful.

Another puzzle: regardless of whether or not I've slept all afternoon, I always come to life between 8 and 10pm, on the dot.  I am not just awake but energized, in an absolutely outstanding mood, sliding through the hallway in my socks, rolling around on our bed in a fit of laughter. David's bemused, then annoyed, then asleep.

Still feeling very cheerful, I go to the kitchen, open the computer and try to work, although lately I've been distracted by reading those useless little articles that pop up on Facebook, about how lemon juice will cure cancer, and people who suffer from insomnia are statistically more likely to be to highly creative geniuses, (sources unknown, studies not cited, none of it true.) But alone in the kitchen with the whole dreadful night stretching before me, those little articles and their accompanying photostock images of lavender plants and women in bathrobes, they feel so easy and hopeful. Maybe I'm just a highly creative genius. I knew it.

Except for what's happening to me feels different than an everyday bout with insomnia, a condition that's run through everyone in my immediate family multiple times over. This is, as one Lyme literate psychiatrist, Dr. Robert C. Bransfield, describes as, "a complete circadian interruption," caused by the damage done by spirochete to the neurons in the brainstem, which control your sleep-wake cycle. "When you lose some of those neurons.....this can create a vicious cycle of neurodegeneration."

A vicious cycle because when you cannot sleep, you cannot heal.

A disturbance in sleep patterns is often the first presentation of chronic Lyme disease. In one study, 100% of Lyme patience suffered from sleep disorders.

So I continue to sleep in strange, sporadic bursts, my daily routines shifting and resettling, breaking away from those of my husband and the people around me and beginning to float away like a piece of ice in a stream. I continue to lose sleep, and I get worse.

Thank you for following my story of fighting chronic neurological Lyme Disease. Follow me on Instagram: @thewildercoast and @from_lyme_to_emerald. Feel free to share this story to help promote the understanding and acceptance of chronic lyme disease. 

Nobody Down There Will Help You

Follow along on Instagram @thewildercoast
On December 8th, 2015, I walked out of a brand new practitioner's office holding 13 prescriptions. Among them were anti-psychotics, anti-seizures, anti-convulsants, neurotrophic meds, sleep meds, anti-depressants and mood stabilizers.

This might seem odd, considering that the half dozen doctors I'd visited in the previous two months had insisted, in what felt like a single orchestrated act of dismissal, that I was, in fact, "a very healthy girl".

So I kept switching general practitioners, making the assistant fill out the paperwork she wasn't happy to be filling out, transferring my files to someone new, someone who might listen to me as I sat on the examination table, trying to steady my voice as I read through the growing list of symptoms that I keep recorded on my phone. 

At these appointments, in an effort to appear like someone who should be paid attention to, I always dressed as if I might be attending a job interview afterwards. I learned to keep my words even, free of emotion, as if I were a lawyer presenting the case on behalf of myself. I would try to get through my list of symptoms as quickly as possible, but there was never enough time. I'd choose my top five, the ones I found most disturbing, the most difficult to ignore.

But it kept not working. One by one the doctors appeared in front of me, white coated and dully impressed with themselves. They'd glance at their clipboards and assure me there was nothing much to worry about. One of them handed me a thick white binder filled with the names of local therapists. Another fixed me with a sympathetic look and said, "I'm so sorry you're depressed."

I never said I was depressed. 

On one particularly confusing afternoon, a younger MD I'd been seeing on and off since I moved to Asheville, seemed to be absorbing what I said. She listened, leaning forward with her hands clasped around her knee, nodding at the appropriate times. But the time I'd gotten through my allotted time, she smiled and sighed, with a dramatic shrug. Then she asked brightly, "So are you planning on having a baby any time soon?"       

By the time thanksgiving came around, I was, if not depressed, then at least completely baffled by the fact that nobody would help me. It was the first thought to hit me every morning when I woke up and felt the symptoms descend. On some mornings, my mind would awaken up but I'd find myself unable to move or even open my eyes- a type of nocturnal seizure. I'd lie there for a minute or two, conscious but paralyzed, rolling the question around in my head.

Nobody will help me.

Why will nobody help me.  

It was over thanksgiving that I dragged myself and my husband to a privately run urgent clinic, having been hit with an intense and mysterious symptom known as mal de dembarquement. If I was unable to catch the attention of any doctor, then maybe husband could. 

We were spending the holiday in south central Vermont, where I spent over half my life. At the clinic, I asked for a blood draw to test for lyme. I figured I could take advantage of being in New England, where Lyme is endemic and the doctors, I believed at the time, were savvy ("lyme literate."). The two times I had requested a lyme test in Asheville, I was immediately shut down. ("We don't have lyme in North Carolina.") On both occasions I backed down, thrown off by the way the doctors' faces instantly stiffened with annoyance. 

This time, I demanded the test. I refused to leave until they agreed, until I watched somebody leave the room holding a vial of blood. And the doctor fought me. At first, she gave me the familiar chorus: "Look at you, you're healthy." 

"I'm not healthy. I can barely walk right now."

"You say you can barely walk. Come back to me when you can't walk. Then we'll discuss what could be wrong." (This is not an exaggeration, although it's such outrageously bad medicine that if my husband had not been there to witness it, I probably would not believe my own memory.)

"I'm covered in this rash. It feels like I've been burned. I never get a rash."

She waved her hand- "That'll go away. You need to see a therapist."

"I already see a therapist."

"Listen, I could give you a lyme test, but the tests are largely inaccurate. They give false negatives the majority of the time."

"Maybe mine will be positive." 

"It won't be positive. But what if it is? What if you discovered you had Lyme disease, why would you even want to know? Listen to me. You live in the South. Nobody down there will help you."

This is when David spoke up from his chair in the corner, completely even-keeled. "If she has lyme, she wants to know because it's her right to know."

The doctor turned to face him, incredulous. "And you approve of this?" 

We both just stared at her, barely comprehending the audacity of a doctor to ask approval from a patient's husband like this. She threw her hands up. She was over us. "Fine." The door clicked shut behind her.

She was correct about the lyme test: they are complicated, and notoriously inaccurate. Many people who suffer terribly from lyme disease are presented with false negatives. (The CDC criteria misses between 1/3 and 2/3 of all true positives, especially in later stages.) In many cases, lyme is so covertly hidden within the body that the blood shows up as clear, the blood lies, although mine didn't.