By Edward McSweegan
"Are you back online with those
"They're not crazy. And neither am
"Well, you're making me crazy. And
I listened to his angry exhale. I
could feel his eyes on the back of my neck as I stared at the computer screen.
My skin is super-sensitive since the disease started.
He said, "The kids are in bed, in
case you manage to drag yourself away from that online loony bin."
I listened to his feet stomp into
The kids are fine. He's fine too.
But I'm not. Doesn't he understand that? It hurts just to sit here and type out
my messages to the group. I don't know what I'll do if I can't type anymore. Who
will I talk to about this endless nightmare?
I shouldn't say that. Frank was a
good husband. He went with me to the doctors. I had all the symptoms. I still
do. There's fever, sweats, chills, sore throat, upset stomach, shortness of
breath, joint pain, headaches, eye floaters, confusion, forgetfulness…,
confusion, irritability--that's mostly Frank's fault--tremors and exhaustion. I
think there are more. They come and go.
The first doctor I saw didn't have a
clue. He poked and prodded and asked about the flu.
"It's June. Who gets the flu in
June?” I asked.
"It happens," he said from behind
the barricade of his desk.
I tried most of the doctors in town.
None of them knew what they were doing. None of them made a diagnosis I could
On grocery day, I was still
wondering why I felt so bad when I overheard two women talking about Lyme
disease and the ticks the older woman said she kept finding in her yard. I
backed out of line with my cart.
“Excuse me,” I said. “What were you
saying about those ticks?”
"Oh, it's dreadful, dear. Nasty,
blood-sucking creatures. Then you get all those horrible complications that
never go away. The doctors never manage to diagnose it," she said. “It’s a
I was so excited. I grabbed her arm
as if she might suddenly disappear. "Yes, I think I have that." I told her about
all my symptoms and the doctors' silly ideas about flu and aging.
"My dear, they have no idea.” She
waved a dismissive hand. "You need an expert.”
“And you need the right information
to make sure they give you the right antibiotics," said the other woman.
"Where can I…?"
"The Internet. There is a whole
community of wonderful patients who can help you get the right treatments for
this awful thing."
She scribbled some Web addresses on
the corner of her grocery list, tore off the paper and handed it to me. "You
check here before you waste more time with those HMO docs. We have to help
ourselves, dear. Keep in touch."
Well, she was right. I found
everything on the Internet. Some victims had posted their symptoms, a
do-it-yourself diagnostic survey, and heart-breaking stories about ruined health
and indifferent doctors. Now I didn’t feel so alone.
Frank took me to another doctor and
I got the Lyme blood tests. All the tests came back negative, but I knew they
would. The Internet sites said the tests were inaccurate so you had to rely on
how you felt.
The doctor shook his head and said I
was wrong. “Online chat rooms and newsgroups are not reliable medical sources.
You shouldn’t listen to faceless strangers just because they’re agreeable and
accessible through a computer.”
I saw Frank nodding in agreement. I
think that was when he decided I was obsessed. That was so unfair of him. All I
wanted was to feel better again.
Driving home, he said, "Honey, none
of the doctors can find any evidence that this is Lyme. They did the blood work.
I think we need to re-focus and ask what else it could be."
"No. The tests are unreliable. The
Internet says you can be seronegative."
“Then why’d you take ‘em in the
first place?” He raked his fingers through his "Look, a pregnancy test isn't
always reliable either. But you take five of them and if they're all negative
it's safe to say you're not pregnant. Right?"
He had that nodding, eager look on
his face. I could see he was hoping I would just agree. But I couldn't. Other
people failed the tests and still had Lyme. I knew I did too. "I'm not
pregnant," I said. We drove home in silence.
The doctor refused to write me a
script for antibiotics. I’d already used all the antibiotics I got from the all
the others. It’s so outrageous having to beg for the medicine you need to get
well. Lucky for me, someone in Lyme Chat said you could buy antibiotics online.
They were for aquarium fish, but so what. I bought three hundred dollars worth
before Frank saw the credit card bills and went
A week later, Frank suggested we see
a specialist at the university hospital.
Well, he seemed nice enough. He read
through my charts and asked me about my lab work. I didn’t tell him about the
He made a temple of his fingers and
said, "You know, these ticks are clever little vampires. They have tiny
saw-toothed heads to cut through your skin and burrow in." He jabbed two fingers
onto the desktop. "Then they secrete a cement that holds them in place. That's
why they're so hard to pull out. Now once they get themselves anchored they
release various chemicals to dampen your immune system and keep your blood from
I felt faint.
"And the bacteria they sometimes
carry, they're sort of shaped like microscopic worms or snakes. A lot of people
imagine these things wiggling through their skin and corkscrewing into their
nerves and joints."
I scratched at a sudden itch on my
“These can be very powerful and
disturbing images for many people. Sometimes they can be overwhelming, even when
there is no tick. No parasite. No bacteria."
"What?" I asked. "You mean, not
He drummed his fingers on his desk.
"It's a condition called 'delusional parasitosis'. Lyme disease fits this
paradigm for a lot of people: some of whom are often so desperate for a physical
explanation to an illness when, in fact, it may be more appropriate to explore
an emotional or psychiatric…."
I was out of my chair and out the
door before he finished telling me I was nuts. In the car, I screamed at Frank
for tricking me. “I’m not crazy.”
"Look, you need help,” he pleaded.
"You need to get well. Who cares how that happens as long as it happens? Those
hypochondriacs on the Internet are just re-enforcing your belief in something no
one else can see."
"Then I'll have to show you," I
On Saturday, I got myself out of the
house and drove over to the kids' school. Where the playground backed up to the
woods, I unfolded one of our queen-size white sheets and dragged it over the
uncut grass. I saw a tick expert do this on the Discovery Channel. Then I turned
the sheet over.
"There they are." I started
laughing. Reluctantly, I knelt down and counted the tiny black dots clinging to
my sheet. I used a stiff blade of grass to flick the little monsters into an old
baby food jar. I jammed the lid and hurried home.
I showered and shampooed. Then I
went into our backyard with a fresh white sheet; I had to throw the first one
away. How could I ever sleep on it again? I dragged the sheet around the yard
until I found a tick. Thank God we didn’t have as many as the school. I showered
again, threw away the other contaminated sheet, and waited for Frank to come
When he came in I waved the jar in
his face and said, "Here's your proof. We're infested."
He took the jar and peered at it.
"Ticks. Nymphal ticks. The kind that
infect you. They’re loaded with Lyme bacteria and God knows what else."
He rolled his eyes. "Oh, please.
I'll spray some pesticide if you're afraid of the backyard. Is there any dinner
or do we have to eat ticks?"
I stormed upstairs and got back
online to tell my fellow victims about the ticks I found.
Later, Frank came upstairs to nag me
about my Internet sessions, but I ignored him. After he went to bed I found my
jar of ticks in the kitchen and brought it upstairs.
The boys were asleep. I straightened
out their sheets and blankets. I know I haven’t been the best mother to them
lately. But I’m so tired from having to fight this disease alone. I need help.
I unscrewed the jar's lid and
sprinkled the ticks into their hair.
Someone has to listen to me.