Writing from Lyme Disease

Lyme affects every aspect of our lives. It can trigger depression through amino acid shortages, as if just the thought of having it and all the damage it does is not depressing enough. I write when I feel poorly, if my hands aren't too tired. It helps me to get through it.

Lately, I've been writing on mykuworld. Myku are 4-line poems that are a cross between haiku and Ogden Nash. The poems are written in tandem with other people's poems, inspiring each other to write the next poem. It's a chain that goes in up to 8 directions at once.

For example:

Thirst

Lyme, clever adversary,
imitates diseases diverse-
Parkinson's, MS, depression-
all hide Lyme's secret curse.

led me to write:

Thirst

Exquisite is a word I'd
heard often applied to pain.
Lyme shows me why it's right,
again and again and again.


Come and try it! I am katepoet at mykuworld.

I also write longer poems. Here's one that is older - I might write it differently now - but it is an accurate picture of our lives when we were first diagnosed a few years ago.

My Writing Life with Lyme Disease

My husband sleeps in our bed upstairs,
wrapped in a cottony cocoon of soft linens.
his day starts early, before the onslaught of rush hour traffic.
Just the thought of him tempts me to abandon my work, invade the bed,
unwrap my love and enjoy the silken warmth of his skin.

Outside the sky is dark; the neighbor’s lights are dimming, flicking out.
The phone is still, meals have been eaten, dishes are done, or not.
The laundry is spinning in the dryer below me,
hardware on cloth clinking against the metal drum.

It is time to work if I am well,
I can write for hours.

When Lyme disease rages for recognition
goals fly out the window,
shredding and tearing in the wind,
paper confetti blizzard in manmade canyons,
a New York City tickertape parade.

A migraine trounces me with the dull thump of a leather mallet
or the quick, unexpected stab of a sharpened screwdriver.
Pain, nausea, a general malaise,
my vision clouded by an aura of ominous golden worms.
Hours may pass, days, nights,
before I can write a word.

Degenerating discs damaged by neuro-toxins trigger muscle spasms.
My swollen spine slows internal communication,
hands swell, keystrokes become indecipherable.
Strategically placed ice packs cool the neural pathways until
an hour passes, sometimes less but sometimes more,
before messages are sent and received,
hands become useful once again.

Forgetting caution, I sit on the floor, weed the garden,
wash the car, any one of these,
my hands and arms itch and twitch.
I cannot find stillness.
I scratch and rub, twisting to stretch,
striving to ease trapped nerves, to relieve the pressure.
Unabated the relentless itching forces capitulation,
I succumb to a small white pill;
I will be in a fog for two days
before I can consider whether I am well enough to write.

Some days, I am careful, take on only the smallest task.
It does not really matter to this insidious illness,
Lyme does not give points for giving in to its wretched limits.
Yet still I try to appease it.

Gently, cautiously, I connect with community;
attend a rendezvous of writers, friends,
act as if I have a right to live my life.
Strong perfumes, cat dander, cigarette smoke,
all exact their fees from my meager purse,
so highly taxed by Lyme.
I am in bondage to the replicating bacteria.
I rush home to shower, dress in clean clothes, start the laundry;
toxins to my compromised immune system wash quickly down the drain.

Safe again, exhausted; I can’t think, can’t speak, can’t sit upright;
I am supine, laid out by an unexpected uppercut.
Lethargy slips over me, the deepening dark descent
into fatigue’s damp, shadowed cave.
Before reaching nadir, I slide my thoughts to a back burner,
hoping they will stay warm, fresh,
until later, when I wake to devour them,
their flavor returning strong on my tongue.

My own care is not my sole responsibility in this rough-hewn reality.Our son’s Lyme disease strikes out at him like a heat seeking viper,
sinking in her fangs without provocation, injecting her serpentine toxins.
To ease my son’s pain, stop his migraine, an explosive misfired missile,
alleviate his deep fatigue, I fetch ice packs, food;
prepare an unlit quiet room; do whatever I can,
to bring some joy into his Lyme-invaded life.

Our Boston terrier claims Lyme disease, too. It is contagious.
He got it with his pedigree, Buddy Boy’s Bowser.
His dam and sire gifted the tenacious spirochete
through their blood as we gifted it to our son.
Bowser’s care is mine, also, sitting up all night on the couch,
our dog cradled against my heart,
wondering why I didn’t just have another child
if a dog was going to be this much work.

Days go by, sometimes weeks, a month;
I forget the date, the time, the appointments.
I don’t check the voice mail, open the post, balance the checkbook.
I am breathing through all of our pain,
allowing myself to think, each time it seems to ease up,
that we will be well, life will be joyful,
the sun will rise again and I will see it, pain free.

And in each small momentary calmness,
I hobble to the table in the corner of the living room,
push the silver power button,
open a blank page,
and pretend that I am a writer.

Sometimes, I am awed.
Inkjet sculpted text spews out of the printer,
an idea hatched, nurtured and grown
into a piece of art, something I might share,
when next I remember that it is Thursday,
A day for kinship with other writers,
time to listen, applaud, critique, learn—
to be of value, not just recovering from Lyme disease,
to live my writing life.

Katherine A Minden ©2006

Naltrexone or LDN or Low Dose Naltrexone

The MD who is helping us is Dr. John Hart of Fredericksburg, VA. He suggested trying low dose naltrexone. I'm not an MD or a chemist so my understanding is very rudimentary. Naltrexone is an opioid antagonist which competes with opioids for the receptors they would use. It's been used to help recovering alcoholics and drug addicts, and to improve immune function in people with various immune system and auto-immune disorders. It seems to suppress endorphin production when sleeping, stimulating the body to produce higher rates of endorphins in response to the deficit.


Here's a partial list of diseases it seems to help:
Lyme
Crohn's
Some cancers
Fibromyalgia
Multiple Sclerosis (MS)
Rheumatoid Arthritis

I went looking for information and found a couple of sites that seem to have useful information. One is low dose naltrexone. I found lots of great videos on youtube of people detailing their experiences with the drug.

The first night I took it, I woke up in about 1 1/2 hrs. to see a huge gray and hairy spider skittering up my wall and across the ceiling. It was an hallucination. It's been 4 days now and I haven't had an recurrence of sleep disturbance or bad dreams with hallucinations. I didn't sleep the rest of that night though.

I have had a lot of fatigue, but I think that's because I am doing more physically. I've been losing physical coordination and strength consistently for the last year or two. I couldn't do things like sort papers because my fingers couldn't separate them - too numb. I've actually been sorting papers and cleaning up my year's worth of teaching papers. So there's an improvement but it's hard to quantify right now. I am sleeping a lot. I get a couple hours of things done and have to rest. I've been sleeping 10 or more hours a day. This is not great for working, but I have a lighter schedule right now in order to accommodate new therapies.

I am also taking Bactrim right now, a sulfa-based antibiotic. What I noticed as soon as I started the Bactrim was a huge jump in energy levels, and optimism. So, it must be slowing down the progress of the bacteria in my system.

I have borrelia Burgdorferi. The test that was accurate, at last, was done by Central Florida Research. Your MD can request a test kit for you.

Fatiguing out again so I'll stop here.

Fighting Lyme Disease

My family and I have been fighting Lyme for almost 20 years now. I first suspected it was Lyme 18 years ago, but the fallible Western Blot test came up with negatives all around. Six years ago, I had a new Lyme test that looks for the bacteria using bio-luminescence instead of looking for anti-bodies or other traces. Lyme was confirmed.

I believe that I have had Lyme since I was quite small since I have no recollection of a tick bite ever. However, since Lyme is contagious through body fluids, it is possible I got Lyme from my parents, from a beau... lots of people. My son was born with Lyme. I gave it to him. I'll try to track down the links to the papers that explain how this spirochete is passed from person to person. It is a spirochete, like syphilis. Syphilis used to be called "The Great Imitator" and that's what Lyme is like, too. It can trigger or mimic MS, Parkinson's, bi-polar, ADHD... the list is long.

The purpose of this blog isn't to re-detail what others have said better than I ever will. I have chosen to fight the Lyme bacteria more aggressively this summer and I thought it might be helpful to others considering the fight, if I shared how it goes.

I'm tired today, and my hands are slow so I'll stop here for now. Some days are just that way.

Katherine A Minden ©2009