Babesia microti – Lyme Feels Like This

“What If I Get Better?”

We started on solid ground, our footing sure, each step of life’s terrain mapped out in our heads. There would be rough patches, we knew. Our expectation, though, was that we would traverse them all and reach the peak.

But things shifted in ways we didn’t anticipate. A crack formed; a fissure so narrow, at first, we just kept going, stepped over the little aches in our knees. Hopped, while we still could, around that fuzzy feeling in our heads. We ducked under the cover of over-the-counter pain killers and trudged along, our ears ringing so loudly we never heard the avalanche of hurt tumbling our way, intent on knocking our feet from under us.

Then we were dizzy, shaky. We could feel the tremors when we held a pen or slipped a spoon between our lips. Our world became unstable, and we found ourselves grabbing hold of walls, furniture, the person beside us. Our steps became arduous from hoisting our limbs over the obstacles that kept showing up in our path. Things that, a few months prior had been only pebbles, were now boulders, immovable, expansive; blocking the whole trail.

How had we misread the signs of our inevitable cave-in?

At first, it was just loose stones, bits of gravel. They only trickled and sometimes didn’t move at all. If it had been a constant rumble, we’d have recognized the danger, but we had no idea those little bits of tumbling rock were a part of something bigger. No clue they were pieces of our very foundation.

We turned to science, to the detectors and fixers of bodily earthquakes. They attached sensors to our brains, hearts, nerves. They looked diligently for any disruptions inside or out. When they couldn’t find one, they made guesses that they called, “educated”; pulled blood from our veins and ran test after test, all-the-while warning us that a positive result didn’t prove we were sick, and a negative didn’t prove we were well. They promised to look at the whole picture; make a determination, let us know how long before we would fall apart.

But science was stumped, or just ignoring the data. Either way, too late came too soon, the crack became a gaping hole. It sucked us under and our productive, happy lives crumbled.

At first, we braced ourselves. Surely, there would be some room for escape. A simple treatment; the right pill.

When there wasn’t, and the wreckage was so much we couldn’t comprehend, we remained determined to dig our way out; move every stone out of the way. We would not eat gluten. We would not consume dairy. We would not partake of sugar. We’d get enough sleep, do yoga, drink water, meditate. We would eat Keto, Paleo, Autoimmune. We would not, I repeat, not, get stressed.

But it was so confusing. We’d just gotten rid of the pain in our feet, hadn’t we? Just yesterday it was better, but once more, they felt as if they’d been punched all night. And two days prior, wasn’t our thinking clearer? We weren’t sure. We thought it had been, but we can’t remember, not with any clarity. We excavated symptoms only to watch our clear, clean space fill again as they rolled back in or new ones took their places.

We asked our scientists over and over, “When will I get better? When?”

At first, it was scary; dark, lonely, silent. But after a while, our eyes adjusted to the gloom; our mind to the quiet. Finally, we accepted our place in this crumbling heap; stretched out our arms and began to gather the fragments, pulling them close; wrapping them around ourselves like a cold, hard blanket.

What else could we do? We had to hold on to something, and since this disease seemed unshakable, we grabbed on to it and embraced our new “normal.”

“It’s better this way”, we reasoned. Buried under the natural disaster of sickness, no longer would we have to do the things that had become so difficult, like talking, thinking fast, getting jokes, feeling sympathy, sorrow, or joy. Instead of trying to discard the stones, we began stacking them with precision. We built a fortress, and tucked away, relieved no one could see us.

We couldn’t drive. Our road was filled with potholes and rubble. It was too hard to remember what a red light or a stop sign meant; too hard to recall the way home or where we were. So, we got cozy in the passenger seat; leaned back and watched things pass by in a blur.

We tried crawling out each day to go to work, but the weight of our symptoms – – too many to count – – was too much, the load too heavy to add the responsibility of bread-winning. Our brains were filled with dust, no room for thoughts, problem solving, or words. So, we quit or were let go. At least that left time for hobbies – – as long as they weren’t too strenuous or didn’t demand clear thought.

We discovered a small, but bright light inside our burrow. A screen held relief from complete isolation. We weren’t exactly alone. Even in the deepest, darkest place, we could find a signal; a connection. There were people like us hunkered in the ruins. We couldn’t see them face to face, but we found friends, a tribe, a community of like-diseased sufferers. From our corner, we could call out and find validation, encouragement, ideas, and ways to feel a little better sometimes. We could say, “Hey, it’s a full moon and I feel like crap.” Or, name weird symptoms like when our ankles feel wet for no reason, or our lips have an imaginary bug crawling on them that won’t go away no matter how hard we rub. We could proclaim these without fear, knowing their voices would echo our own.

All those things were long ago.

Now, this fracture feels permanent; like part of us, or more often like who we are – – a brittle shard, once whole. We still turn to the scientists, but more and more we feel they’ve lost the patience to uncover our past. Maybe they’ve done all the digging, brushing, and cleaning they can. So, we’ve stopped asking ‘when.’

Instead, here in our dark, hushed places, we whisper, afraid to say it out loud, “What if I get better? What if?”

It happens. Sometimes, someone finds a way out. They stand, stretch, and smile, looking at their limbs like they’ve just shown up. Wide-eyed from a suddenly clear mind, they buy work clothes, running shoes, school supplies; get new hairstyles, make plans, make friends.

We peer between the slabs of our bunkers; watch their strong arms reach up until their shadow-self is washed away by light. We watch until they’re gone. They’ll be back now and again to tell us what it’s like out there, give us pointers, share what worked for them, helped them rebuild. On hopeful days we’ll soak in their wisdom, on days of despair, we’ll only hear Charlie Brown’s teacher.

So, what if we get better?

What if one day, we are strong enough to ascend? What if the pain, fatigue, mental fog, numbness, tingling, anxiety, depression all stay underground and we, somehow, rise to the surface? What if we can make it out clean and fresh, no trace of grit clinging to our flesh; no sludge clogging our minds? No second thoughts about going out with friends? No hesitation about volunteering?

It’s hard to imagine. Some of us don’t have the strength to stand, let alone climb out of a tomb. And better isn’t well.

If we find our footing and move forward will we be looking over our shoulders, wiser now, to the threat of falling rock? Our steps will be wary because we won’t want to wake the giant. We know what it’s like to be swallowed whole and will do anything to keep ourselves free; anything to stay out from under.

Our eyes no longer care for the light, our ears, the noise. We’re not sure we can endure the world above ground. Our brains have failed us so many times we don’t trust them; don’t believe they’re up to the challenge of living in the world of wellness. We fantasize about jobs, parties, picnics, or maybe a club. But what if our panic comes with us? What if it never really leaves? It might be impossible to speak the words we need or to listen and understand the words of others.

And what of our friends still living in the throes of a long, long illness? They’ve meant so much to us, how can we leave them behind? No longer share with them the strange communion of affliction?

Remission is a permanent home on a fault line. Always at risk, the cost to keep it standing is high. The hatches are never completely battened down so we reinforce in hopes we’ll never again have to rebuild from the ground up, but this is where we live, and no matter how badly we want to, we can’t choose a disease-free zone.

Standing in a place that’s not disintegrating, where everything is exposed, we will look unstable and unsteady sometimes, but we know how far we’ve come. We remember the initial collapse, the dementia, the hallucinations, the pain. The days of endless sleep and nights of relentless wakefulness are fresh in our minds. Sometimes, those things are still with us in flashes, moments. Some days they spew up from where we’d buried them. To a degree, some of them are always here.

But, we fear those who watch, will only see us as less than we were, unaware of how much more we’ve had to be, in order to keep trying.

Lyme feels like this.

Romans 8:23b “. . . for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us.” (NLT)

Try And Try And Try Again – – Or Not

Gardens in early spring are broken, dry, and brown, but if you look underneath the leaf litter and last year’s mulch, you’ll find green.

It’s the same every year. I snap off the old dead stems and seed heads and toss them into the compost where they rot themselves into nourishment for the new florae. I try to clear the way and clean the slate. I add new plants, divide the ones too big for their own good, and remove those taken by the cold.

Every year, I start over.

But front to back, and side to side, my plot is filled with stubborn invaders.

Gooseneck loosestrife is lovely, but I didn’t research it, just stuck it in the ground delighted by its drooping cluster of dainty, white blooms. I soon learned it’s not meant for containment but needs its own space and will choke the life out of everything else to get it. An apt name, it is on the loose and causing me immense strife.

There’s also common speedwell – – not native to North America, it’s certainly made itself at home. Every spring, I think I’ll just give in and call it my ground cover. But, every spring, I tug and tug and tug it out, knowing my efforts are futile. It’s long runners will produce new shoots faster than I can say, “shoot.” I apply mulch like a pillow to a face and hope against hope it won’t resurface.

So, my gardening season begins in a sort of panic. Pre-Lyme, I was a butterfly – – fluttering from task to task; soaking it all up, productive and happy. But, I’ve become a caterpillar. I inch along, stay low to the ground, always seated. I pull the garden cart – – two steps then rest, two steps, then rest.

I am defeated before I start. It’s a simple fact.

I know gardens are never finished, even for the healthy. That used to make me happy, but now I’m more acutely aware that my growing season is limited and feel pressure to get it done; make it perfect. I want to make the most of what I have, but spring and summer outpace me. I can’t keep up anymore.

Gardens are places of constant change and perpetuation. They’re filled with decay, death, and disease, but they heal, even resurrect. A garden can be suffocated by alien life; its residents killed by ignorant gardeners who don’t bother to learn what their plants need.

But, they endure. They not only withstand fire and freezing but rise new and vibrant from the ash and snow.

Gardens keep trying.

I am also in a perpetual state of succumbing to disease and decay, then standing again in healing and new growth; succumbing, healing – – always starting over. There are days, when dry, brown, and brittle are all I know and days of flourishing, of feeling bright, full of color and hope.

But, this year’s different. After four years of treatment, and at the risk of being overrun, I decided to stop. I told my doctor I was taking some time off, that I didn’t want to spend the warm days as a patient, keeping appointments, and swallowing pills, or worse, those brown, acrimonious tinctures so popular among Lyme-killers. I have had the same symptoms for a long time, without change, so I need to think.

Can I live with some dry twigs? Develop a rapport with these invaders? Can we function as one?

Do I have to keep snapping off the brittle remains of my old self, making room for new shoots only to find them dead again? Must I continue plucking and pulling at invisible bacteria, viruses, parasites only to find them alive because their roots are many and strong? No amount of pruning or pesticide has destroyed my vermin. Can I just call them my cover? Pretend they belong?

Is it possible to simply look away?

I mean, they aren’t unobtrusive.

The fatigue crushes. Pushing a spade into the earth is not always possible. Somedays, I’m too weak and worn-out.

I bend to plant, then raise up gasping for air, heart pounding, hand to chest wondering if it’s a heart attack or just a Lyme-fake. Can I ignore this?

The depression is dark, an immovable mass; the anxiety like pieces of paper in a blender, swirling, coming close, but never hitting the blades. Some days in the garden, I spend in numb defeat, ruled by blight, sitting in slumped surrender. Other days, I cry, knowing it’s too much, and like me, will never be what it was. How do I keep planting hope when I’m buried? How do I take root and find peace, when I’m scattered?

The roaming, restless pain can’t find a place to land. It rears its head without warning, subsides without a hint. It aches, stabs, stings, burns, spasms, pounds, pierces, throbs. Sometimes, my insides are a bug zapper, overrun by bugs, constantly sending useless zings through my neurons; firing without apparent purpose and with miserable aim.

My brain is another world, where the barometric pressure is prone to dramatic shifts. It swells with damp clouds; blooms with a disorienting mist that steals words, thoughts, the ability to spell, converse, or feel things. Can I be fruitful in a stupor?

As I yank speedwell, and ponder what to do, a tiny green butterfly stops for a sip from one of the relentless weeds. I smile. My nemesis, is this little pollinator’s vast spread of sugary nectar. I’ve heard it before and have said it myself – – weeds have purpose. Struggle and suffering feed our character, nourish our souls, and point us to God. I could end this post on this inspirational note; could list the benefits of trials and the hidden blessings of chronic disease. In my writer’s brain, the butterfly is metaphor for mind and heart; for the way they discover sweetness in weeds.

But, that rosy conclusion wouldn’t be an honest picture of how I feel, not right now. From my little stool, in my big garden, in front of me, I see a small circle, cleared of weeds, filled with multi-hued snapdragons. But if I look left, right, in front of, or behind those flowers, I see speedwell. I see gooseneck loosestrife. I see my perennials looking for air, for light, and finding little of either. I see small gain and huge loss. Clearing this circle was costly and painful, and it won’t last. The dragon slayers are waiting to move in.

This ring of frilly, radiant dragons represents a few good days and some small victories, but mostly, treating Lyme has been like pulling weeds with long, stubborn roots that worm through my body, finding and taking everything. Sometimes, it seems treatment only clears the way for a new batch as soon as the medicine stops.

A successful garden, free of weeds and pests, starts with healthy soil; invites good soldiers – – ladybugs, toads, spiders – – to stand at the ready and make quick work of those bugs that would do harm. It has just enough hours of sunlight to warm the ground without thieving all moisture. It catches the rain and draws it toward the roots; doesn’t hold it on the surface in pools and puddles that corrode.

My “soil,” my internal bed, isn’t healthy. I’ve been looking for green, digging in, doing the right things – – diet, exercise, sleep, meditation, prayer. Ideally, these actions should feed my defenders – – those good bacteria and antibodies. They should open a path for nutrients, supplements, and tinctures to reach the places where they can do their promised work.

But these things work until they don’t. Sometimes, they just don’t. And that’s the problem.

This disease keeps finding its springtime. It keeps starting over, forcing me to do the same. I just don’t know if I can keep it up, keep pulling internal weeds, when to the left and right and all around I see illness – – a snaking, complex, foreign system – – that has made itself at home and thrives at my expense.

This disease will never be finished. I know this, and I know that means my efforts to vanquish it will never be either. It’s one of the first things I learned about Lyme – – that remission and maintenance are the goals, not cure. But, I feel so weary thinking of a life spent clawing out small circles of open space, a life of choosing, over and over again, to try and get done what I cannot. That choice, repeated many times, is wearing me down.

Of course, I won’t give up my garden – – not yet. I’ll do the best I can and try to be content when my efforts to eliminate speedwell or all that strife fail. I’ll try not to look at them, but instead focus on the plants I choose – – the ones I’ll nurture. I’ll look at butterflies when they show up, if only for a moment.

But, my body . . . I don’t know. I am losing the drive to clear the way and clean the slate and am, perhaps, at a place of surrender to the reality of more weeds than snapdragons, more shade than sun, more gasping than breathing. I am understanding that I may have to dig a little deeper to find the green and that I may not be strong enough to do it.

Lyme Disease keeps trying.

Lyme feels like this.

Psalm 119:49-50 Remember your word to your servant, in which you have made me hope. This is my comfort in my affliction, that your promise gives me life.

In The Beginning, Babesia

For most, it starts with a symptom. There may have been others before, but they seemed normal: An achy joint, headache, extra tired, a flu-like feeling. And they didn’t last. They came; they went. Eventually though, a sign of sickness, so bold, so brash crashes into our awareness and stops us. It may stop us from walking, remembering, speaking, moving, eating. Lyme embeds itself in every part of the body so it has a lot of choice as to how it will damage us.
This is the way we discover that we are sick. This one loud signal becomes the bellwether, and all the others begin to ring out until they are a cacophony of indicants and any pretense of health is finally done away with.
These symptoms shift and move; take turns. Like a pot of soup, some float to the top, but with a stir those sink, and a different set rises. It’s no wonder it takes so long to put them together; to give them a name. To realize they are Legion.
Lyme patients tend only to recognize the signs by looking back. In the midst of it, doctors try to sort it out. They name a condition to go with each symptom and a drug to go with each name. But when we finally find that one physician whose eyes and mind are open, whose medicine has kept up with the research, we get an answer. We exit his office armed with, and bewildered by, a new truth. We have something. We have Lyme Disease. One thing that’s really many things. Legion.
We climb into our car. Dizzy, exhausted, aching, struggling to recall the way back home. But at least now we know why. On the drive, we say to ourselves, out loud, “Oh, that’s why last year I . . .” or “I remember feeling . . . It must have been the Lyme.”
The harbinger of my decline, I believe was a protozoal parasite called Babesia. Most people don’t realize Lyme disease is caused by a bacteria, let alone that chronic Lyme is a whole army of infectious organisms. Although the symptoms of each do overlap, I look back to my beginnings and believe it was Babesiosis that rose up to conquer me first. I have two strains, but their symptoms are similar.

My Lyme experience started in a panic. Not anxiousness, nervousness, not fretting, or worrying; a panic. My mother had passed. I thought that was why I was lying awake in my young son’s bed trying to protect him from the people I believed lurked outside his window. I thought her death was why I began blacking out; once, while driving, long enough to take out a mailbox. I thought that was why I was seeing things and people who were not really there. It was stress. It was normal.
It stopped, and I moved on thinking I was over it. But during the next 7 years, these things would come and go along with other warnings.
In my pre-Lyme existence, I avoided doctors, but two weeks of nightly fevers, vomiting, and diarrhea finally forced me to drag my embattled body into my physician’s office. He was surprised to see me. It had been three years, after all. But he managed a whole five minutes with me, ordered a complete blood count, and told me to make sure I was up to date on all my “female things.” I complied, and one pap smear, a vaginal ultrasound, and stool test later, knew I had a benign cyst on one ovary, blood-free stool, and a hemoglobin of 9.6 – – nearly transfusion-worthy.
Sometimes, I imagine the little parasites, like enemy submarines, swimming through my vessels, blowing up red blood cells. Lysis: It means “to loose” or to “unbind”. That’s what Babesia does to a red blood cell. Like a microscopic battering ram, it breaks down the cell wall so all the vital ingredients inside drift away and disintegrate. Other times, it inhabits the erythrocytes; forms them into little groups. “Sludging,” they call it. This clumping against the walls of capillaries, and arteries, blocks roadways built for lifeblood to travel. Red blood cells are transporters, delivering oxygen to every part of the body, and while their at it, dispelling carbon dioxide so we’re not poisoned to death. When I am doubled over sucking in air without relief from the feeling of needing it, when I can’t stop yawning, when my hearts jumps like a cricket in my chest, or pounds like a hammer, Babesia is at work starving my tissues and organs of air.
I know Babesia well by now and am certain it inhabits every area of me, but it has an affinity for the hypothalamus and prefrontal cortex. I don’t know why this is, but I do know the consequences.
The hypothalamus is a stabilizer. Homeostatis is this gland’s job. It controls the body temperature, thirst, and appetite. It lulls us to sleep or drives us to stay awake for sex. Oxytocin, that hormonal hug, is produced by this gland, and helps us feel relaxed, happy, loving, empathetic, and over all more mentally stable. The prefrontal cortex houses the personality, and many forms of complex thought; problem solving, decision making, management of social behavior, concentration in the midst of distraction. It manages our moods.
Living with dysfunction in these areas, as well as with red blood cell killers means sudden shifts in mood and emotions, instant alterations in one’s physical and mental state, disruptions in cognitive capacity, and depletion of energy.
I am on fire. A hot ache inside my chest, swells, then unfurls. It rolls through my torso, filling the length of all limbs; culminating in a stinging tingle to my extremities. I grip the arms of my chair and lean forward, gasping at the onset of this ignition. I want to tear off my skin; find my way out before my body erupts. Night brings fever and drenching sweats; I seek relief in a long, quiet soak, but the bath water is too warm. I feel my last breath coming; my heart will stop. I imagine my family discovering me lifeless; my head, one arm draped over the edge in a failed attempt to find air. Summer’s heat is a thick sludge. It seals me in, and I slog through, heavy and lethargic. It seeps into my brain, and I cannot think or understand.
I am frozen; my toes cold, pale. I know they will snap if I’m not careful. The sounds of shivers and chattering teeth reveal my location under layers of clothes and blankets. I go outside bundled in long underwear, wool, and down only to find myself sobbing because despite the layers, I am unprotected. Glacial air knifes through my skin, my muscles; all the way deep down to the bones. Then I peel it all off like a wild woman trapped in a cage inside a pit of fire; clawing and scratching my way out, fearful once more of an impending detonation.
I am exhausted. The sleep of Babesiosis is a never-sleep. I close my eyes, but don’t rest. My mind is busy, one incohesive dream after another, after another. My eyes open in the morning, but I have only switched worlds from restless night to bone-weary day.
I am a wreck. A cluster of nervous paranoid anxieties fill my head and sit like a stone in the pit of my stomach. A heavy blanket soaked in despair, defeat, and sadness drapes my whole self and keeps me pinned down, robs me of light and air. I cannot lift it; cannot crawl out from under so I let it hold me until it doesn’t.
I am numb. My personality has vanished. Where are my emotions? There are days, when faced, even with the death of a friend I am unmoved. As I exist in this strange anesthetized pose, I am conscious of it’s oddness; wonder in those moments why I am not crying, why I am making a pretend sad face as I hug loved ones. Why I feel nothing.
I am confused. Oxygen cannot be late to the brain without upsetting the whole operation. I am sick of standing, clueless, in the middle of a room, no idea why, nor what I am meant to do, and often no memory of getting there. I am weary of panicking when my phone calls are answered because I have no idea who I called or why, or can’t remember answers to questions like, “What’s your date of birth, your social security number, your name?” I’m weary of having to change passwords because I can’t get letters in the right order. Babesia inflames the brain, causes it to swell, blocking blood flow. I know when it happens because I become a fountain of tears; leaks sprung by jabs of despair, anger, frustration, happiness, fear. Emotions bundled so tightly together, fighting for control, they rule me until the Babesiosis is, again, muffled.
I am in pain. There are days, Babesia sits in the middle of my forehead and hurts without relief for months. My neck is strained, fatigued. I cannot hold my head upright for long and feel as if I am stopping a locomotive with the back of my skull. At times, I think the little bugs are lodged in my throat because I cough and cough until it’s raw. My muscles spasm and ache, quadriceps unable to bear the weight of a magazine, deltoids feel as if I’d endured ten tetanus shots the day prior.
Like the contents of my red blood cells, I am undone by Babesia. My personality – – who I am – – my emotions, thoughts, understanding have all been let loose. I am drifting away. Comfort and peace, things I once possessed, are now unbound. There do not seem to be any walls to keep me together or keep me safe; no place of rest that cannot be invaded by these creatures. ‘Loosed,’ ‘unbound,’ may conjure ideas of freedom, but this is not that. This is a disorientating, perplexing push from behind into open air with no sense of place, no certain hope of landing.
Lyme feels like Babesiosis.
Lyme feels like this.