Post by enochroot on Aug 12, 2008 12:56:10 GMT -8
This SELF contributing editor endured a decade of exhaustion, body aches
and brain fog—plus accusations she was making it all up.
Tell us what you think in Hot Topic.
By Tula Karras
From the June 2008 issue
I don't know when or where I was bitten by the tick that gave me Lyme
disease—it could have been during a stroll through a park or even while
petting a dog. But I do remember when my symptoms first struck: November
1994. I was 26, with an entry-level job in New York City, straight off the hay
wagon from Texas and replete with enough energy to go to the gym after
work, play pool until 3 A.M. and roll into the office the next day with a clear
head. My illness began like the flu, but when the fever lingered for a month
despite two weeks of antibiotics, I found a doctor on my plan who could see
me before the weekend.
A specialist in chronic fatigue syndrome, the doctor ran a few tests and then
christened me with a CFS diagnosis. In practically the same breath, she
pointed to a glossy women's magazine on her desk and said proudly, "I'm in
this month's issue." I nodded, impressed. Armed with a vial of pork liver
extract that I was to self-inject weekly (an experimental CFS treatment), I left
feeling relieved. There was a name for what had been plaguing me for more
than a month, and it wasn't lethal.
Several weeks later, fatigue became the least of my problems. My muscles
began to seize up, a constriction like being on the starting block at a race,
waiting for the gun to go off. Worse, I had heart palpitations and dizzy spells
several times a week. I was afraid I was having a heart attack, but my doctor
assured me the spells were typical of CFS. Was that supposed to make me
feel better?
Amid all of this drama, I started dating a guy I was crazy about, although he
wasn't as crazy about me. "Maybe your feelings of rejection are showing up in
physical ways," one friend suggested. It got me doubting my own sanity. True,
my thoughts were often so jumbled I couldn't focus on a simple TV sitcom. At
work, I faked it through the day, using brief moments of clarity to perform my
most complex tasks. I frequently called my parents, crying, "What's happening
to me?" They had much sympathy but few answers.
Determined to find help, I sought out several second opinions during the next
few months. An Ayurvedic healer instructed me to have more sex. (Would that
I had the energy! Plus, my new boyfriend had dumped me. Not that I blamed
him: I'd tried to hide my symptoms—which made me seem flaky.) A doctor
my parents recommended implied I was genetically prone to feeling crappy.
And after spacing on several appointments with a Freudian analyst, I was
diagnosed with a subconscious desire to avoid therapy. She prescribed
drugs for anxiety and depression, and they helped me sleep. But my
symptoms waxed and waned, and inevitably I returned to my default
condition: sick and tired.
Lyme came up the first time in 1996. I visited a rheumatologist, who'd had the
disease himself. After hearing my symptoms, he ordered a blood test to look
for signs of the Lyme bacterium. "But I've never had a bull's-eye rash," I said.
He explained that only 60 to 70 percent of sufferers develop the telltale
redness around their tick bite, and he promised to call with the results.
The test was negative, so the doctor tried to ease my symptoms with
treatments, including dehydroepiandrosterone (DHEA), a hormone used
experimentally to treat CFS. But my body aches worsened. After months of
no improvement, I quit taking prescription pills—and seeing
doctors—altogether. I lost faith in Western medicine.
Meanwhile, my social life was all but nonexistent. I constantly canceled plans,
and while friends were mostly supportive, one practically rolled her eyes
every time I bemoaned being sick. "Are you angry with me?" I finally asked
during a phone call.
Her response shocked me. "You'll hate me for saying this, but I think you're
using your symptoms to get sympathy. I can't feel sorry for you anymore." I
hung up and sobbed, afraid that my friend had blurted out what others were
thinking. Did everyone believe I'd been milking or even faking my illness for
two years? So I began to lie, saying I felt fine and wishing I had something,
anything, that would show up on an X-ray to prove I was sick. "If I had cancer,
at least then I'd either die or recover, and there'd be an end or a new
beginning," I wrote in my journal. Somehow I managed to land and keep a
great job (at SELF!), shoring up all my energy on weekends and pushing
through Friday as if it were the last mile of a marathon.
In January 2003, after a seven-year hiatus from doctors, I decided to see one
more. My pain was so overwhelming that I had considered moving in with my
parents—the kiss of death for a single woman in her 30s. As I chronicled my
symptoms to Leo Galland, M.D., a chronic-illness specialist in New York City,
I broke down in tears. "I think I can help you," he said. He didn't accept
insurance, and the cost of the specialized tests he ordered was about
$1,500. My health is worth going into debt for, I rationalized. I pulled out a
credit card. "Your Lyme test came back somewhat positive," Dr. Galland
said, calmly delivering the news in his office a few weeks later.
"That's unbelievable! I tested negative for Lyme years ago," I reminded him.
"Yes," he said, "but it's possible to get a false negative or even a false
positive." He explained that few tests detect the actual Lyme bacterium.
Instead, blood tests look for antibodies to the bacterium, and these measures
aren't foolproof. "Given your test results and history, it's pretty clear you were
exposed to a tick at some point," Dr. Galland concluded. More than eight
years after my symptoms started, I was given a prescription for Zithromax, an
antibiotic used for Lyme.
My future was bright, I told myself as I washed down the pill each day. I had
escaped the serious memory loss and rare but crippling arthritis that can
accompany chronic Lyme, and now I was actually starting to improve. After
nine months of taking Zithromax, I went off the drug with Dr. Galland's
blessing, feeling better and energetic enough to do mundane things like
clean and cook. Right before Thanksgiving 2003, however, I was leveled by
what I thought was a flu. It confined me to my bed for days. Back at work a
week later, I suddenly found myself wondering why I couldn't feel my left eyelid
moving when I blinked. I hurried to the bathroom and looked in the mirror. My
left eyelid wasn't moving. Neither was the left side of my mouth when I smiled.
I went cold: By now I knew that partial facial paralysis (aka Bell's palsy) was a
sign of Lyme. I rushed to see Dr. Galland, who took one look at my face and
confirmed my self-diagnosis, then explained that the Lyme bacterium had
invaded my central nervous system. I felt devastated but also oddly
vindicated: I finally had proof—on my face, for all the world to see—that I had
Lyme.
Oral antibiotics resolved my Bell's palsy after a month, but other symptoms
came and went. So in late summer 2004, Dr. Galland brought in the big guns:
Rocephin and Claforan, two potent intravenous antibiotics that can better
penetrate the central nervous system and fight the Lyme bacterium where it
hides. Within days of being hooked up to the IV—administered via a 24/7
pump housed in a fanny pack—I saw huge improvement. I was so giddy I was
able to brush off the horrified looks from women in my office elevator, who
eyed my IV bag as if I had a dead rat attached to my body. (Truth be told, I
would have strapped a dead rat to my body if it would have cured me.)
For three months, I trotted around with my beloved life-support system at my
side. In January 2005, I had my IV port removed, and after taking an oral
antibiotic for a few more weeks, I've been fairly healthy ever since, knock on
Formica. (I don't spend much time in the woods these days, for obvious
reasons.) I'm no longer fighting mad at the doctors who could have spared
me years of turmoil with the right diagnosis and simple antibiotics. Heck, I
was lucky to find a doctor versed in chronic Lyme, considering many don't
even believe in it. (See "If I Knew Then What I Know Now...".) My best advice
to women suffering from any long-term, unexplained symptoms is to find a
doctor who perseveres with you until you're on your way to wellness. You'll
know when you're getting the brush-off: Your body may be sick, but you can
always trust your gut.
and brain fog—plus accusations she was making it all up.
Tell us what you think in Hot Topic.
By Tula Karras
From the June 2008 issue
I don't know when or where I was bitten by the tick that gave me Lyme
disease—it could have been during a stroll through a park or even while
petting a dog. But I do remember when my symptoms first struck: November
1994. I was 26, with an entry-level job in New York City, straight off the hay
wagon from Texas and replete with enough energy to go to the gym after
work, play pool until 3 A.M. and roll into the office the next day with a clear
head. My illness began like the flu, but when the fever lingered for a month
despite two weeks of antibiotics, I found a doctor on my plan who could see
me before the weekend.
A specialist in chronic fatigue syndrome, the doctor ran a few tests and then
christened me with a CFS diagnosis. In practically the same breath, she
pointed to a glossy women's magazine on her desk and said proudly, "I'm in
this month's issue." I nodded, impressed. Armed with a vial of pork liver
extract that I was to self-inject weekly (an experimental CFS treatment), I left
feeling relieved. There was a name for what had been plaguing me for more
than a month, and it wasn't lethal.
Several weeks later, fatigue became the least of my problems. My muscles
began to seize up, a constriction like being on the starting block at a race,
waiting for the gun to go off. Worse, I had heart palpitations and dizzy spells
several times a week. I was afraid I was having a heart attack, but my doctor
assured me the spells were typical of CFS. Was that supposed to make me
feel better?
Amid all of this drama, I started dating a guy I was crazy about, although he
wasn't as crazy about me. "Maybe your feelings of rejection are showing up in
physical ways," one friend suggested. It got me doubting my own sanity. True,
my thoughts were often so jumbled I couldn't focus on a simple TV sitcom. At
work, I faked it through the day, using brief moments of clarity to perform my
most complex tasks. I frequently called my parents, crying, "What's happening
to me?" They had much sympathy but few answers.
Determined to find help, I sought out several second opinions during the next
few months. An Ayurvedic healer instructed me to have more sex. (Would that
I had the energy! Plus, my new boyfriend had dumped me. Not that I blamed
him: I'd tried to hide my symptoms—which made me seem flaky.) A doctor
my parents recommended implied I was genetically prone to feeling crappy.
And after spacing on several appointments with a Freudian analyst, I was
diagnosed with a subconscious desire to avoid therapy. She prescribed
drugs for anxiety and depression, and they helped me sleep. But my
symptoms waxed and waned, and inevitably I returned to my default
condition: sick and tired.
Lyme came up the first time in 1996. I visited a rheumatologist, who'd had the
disease himself. After hearing my symptoms, he ordered a blood test to look
for signs of the Lyme bacterium. "But I've never had a bull's-eye rash," I said.
He explained that only 60 to 70 percent of sufferers develop the telltale
redness around their tick bite, and he promised to call with the results.
The test was negative, so the doctor tried to ease my symptoms with
treatments, including dehydroepiandrosterone (DHEA), a hormone used
experimentally to treat CFS. But my body aches worsened. After months of
no improvement, I quit taking prescription pills—and seeing
doctors—altogether. I lost faith in Western medicine.
Meanwhile, my social life was all but nonexistent. I constantly canceled plans,
and while friends were mostly supportive, one practically rolled her eyes
every time I bemoaned being sick. "Are you angry with me?" I finally asked
during a phone call.
Her response shocked me. "You'll hate me for saying this, but I think you're
using your symptoms to get sympathy. I can't feel sorry for you anymore." I
hung up and sobbed, afraid that my friend had blurted out what others were
thinking. Did everyone believe I'd been milking or even faking my illness for
two years? So I began to lie, saying I felt fine and wishing I had something,
anything, that would show up on an X-ray to prove I was sick. "If I had cancer,
at least then I'd either die or recover, and there'd be an end or a new
beginning," I wrote in my journal. Somehow I managed to land and keep a
great job (at SELF!), shoring up all my energy on weekends and pushing
through Friday as if it were the last mile of a marathon.
In January 2003, after a seven-year hiatus from doctors, I decided to see one
more. My pain was so overwhelming that I had considered moving in with my
parents—the kiss of death for a single woman in her 30s. As I chronicled my
symptoms to Leo Galland, M.D., a chronic-illness specialist in New York City,
I broke down in tears. "I think I can help you," he said. He didn't accept
insurance, and the cost of the specialized tests he ordered was about
$1,500. My health is worth going into debt for, I rationalized. I pulled out a
credit card. "Your Lyme test came back somewhat positive," Dr. Galland
said, calmly delivering the news in his office a few weeks later.
"That's unbelievable! I tested negative for Lyme years ago," I reminded him.
"Yes," he said, "but it's possible to get a false negative or even a false
positive." He explained that few tests detect the actual Lyme bacterium.
Instead, blood tests look for antibodies to the bacterium, and these measures
aren't foolproof. "Given your test results and history, it's pretty clear you were
exposed to a tick at some point," Dr. Galland concluded. More than eight
years after my symptoms started, I was given a prescription for Zithromax, an
antibiotic used for Lyme.
My future was bright, I told myself as I washed down the pill each day. I had
escaped the serious memory loss and rare but crippling arthritis that can
accompany chronic Lyme, and now I was actually starting to improve. After
nine months of taking Zithromax, I went off the drug with Dr. Galland's
blessing, feeling better and energetic enough to do mundane things like
clean and cook. Right before Thanksgiving 2003, however, I was leveled by
what I thought was a flu. It confined me to my bed for days. Back at work a
week later, I suddenly found myself wondering why I couldn't feel my left eyelid
moving when I blinked. I hurried to the bathroom and looked in the mirror. My
left eyelid wasn't moving. Neither was the left side of my mouth when I smiled.
I went cold: By now I knew that partial facial paralysis (aka Bell's palsy) was a
sign of Lyme. I rushed to see Dr. Galland, who took one look at my face and
confirmed my self-diagnosis, then explained that the Lyme bacterium had
invaded my central nervous system. I felt devastated but also oddly
vindicated: I finally had proof—on my face, for all the world to see—that I had
Lyme.
Oral antibiotics resolved my Bell's palsy after a month, but other symptoms
came and went. So in late summer 2004, Dr. Galland brought in the big guns:
Rocephin and Claforan, two potent intravenous antibiotics that can better
penetrate the central nervous system and fight the Lyme bacterium where it
hides. Within days of being hooked up to the IV—administered via a 24/7
pump housed in a fanny pack—I saw huge improvement. I was so giddy I was
able to brush off the horrified looks from women in my office elevator, who
eyed my IV bag as if I had a dead rat attached to my body. (Truth be told, I
would have strapped a dead rat to my body if it would have cured me.)
For three months, I trotted around with my beloved life-support system at my
side. In January 2005, I had my IV port removed, and after taking an oral
antibiotic for a few more weeks, I've been fairly healthy ever since, knock on
Formica. (I don't spend much time in the woods these days, for obvious
reasons.) I'm no longer fighting mad at the doctors who could have spared
me years of turmoil with the right diagnosis and simple antibiotics. Heck, I
was lucky to find a doctor versed in chronic Lyme, considering many don't
even believe in it. (See "If I Knew Then What I Know Now...".) My best advice
to women suffering from any long-term, unexplained symptoms is to find a
doctor who perseveres with you until you're on your way to wellness. You'll
know when you're getting the brush-off: Your body may be sick, but you can
always trust your gut.
