JWissmille
2004-07-31 03:20:18 UTC
http://ledger.southofboston.com/articles/2004/07/27/life/life01.txt
LYME DISEASE: Phantom plague - This tick-borne illness can fool even
experts
Linda Hilliard of Walpole, a nurse anesthetist, suffers from Lyme
disease and founded the Lyme Disease Association of Massachusetts. (LISA
BUL/The Patriot Ledger)
By CHAD BERNDTSON
The Patriot Ledger
When Linda Hilliard was first diagnosed with Lyme disease, she had
already had it for nearly a decade. She still doesn't know quite when or
where she was bitten - the Lyme vector is the black-legged deer tick -
but, 20 years later, she is sure it did happen.
''Like most people, I went undetected - I had it for 10 years before I
got a diagnosis, and I had all the typical symptoms,'' Hilliard said.
''I didn't have a single rash during those first 10 years, but I did
have headaches every day, a Bell's palsey, loss of sight, dry eyes,
conjunctivitis, an irritable bladder and lots of nausea,'' she said.
''And then a lot of the typical stiffness - a painful neck, jaw pain,
sore throats, problems swallowing, general malaise. I often just wanted
to go home from work and get under the electric blanket.''
The problem with Lyme disease, and the reason why Hilliard's story is so
common to its sufferers, is that almost all of Lyme's most prevalent
symptoms are also common to other, more easily diagnosed diseases.
Hilliard, 60, is a nurse anesthetist originally from Columbus, Ohio. She
later lived in New Jersey and spent two years in Germany, and then in
Milford, Medfield, Sharon and now Walpole. She isn't sure where she was
bitten, but suspects it was during one of her family's summer visits to
Plymouth.
She has lived with Lyme disease for two decades, and both her daughter
and granddaughter are also Lyme sufferers. Although heavy doses of
antibiotics slowed the progress of the disease after it was confirmed 10
years ago, Hilliard remains afflicted and probably will be for the rest
of her life.
''Twenty years ago, people knew nothing about Lyme disease,'' Hilliard
said. ''Certainly the medical students then never learned about it, they
didn't teach about it in medical school. Infectious disease doctors
didn't know much about it.''
Among other difficulties, including an adult onset of asthma and cardiac
irregularities, the Lyme bacteria also lodged itself in her knee, and
after years of swelling and doctors draining it of fluid, she finally
had to have a full-on knee replacement, and says the same thing now
seems to be happening to her other knee. Most symptoms, in fact, persist
and are a daily struggle for Hilliard.
''My hand is in a splint now, because it's so painful. The pain shoots
up to my elbow and into my shoulder. I have spinal cord deterioration,''
she said. ''I feel, and a lot of people agree, that Lyme disease does
destroy bone and cartilage. Practically every statement I could make
about the disease would have disagreement, but I've been in this
business for so long.''
New Englanders and residents of the Northeast in general are especially
susceptible to tick bites because of the area's abundance of woodlands
and forests, and more cases occur in the summer than all three other
seasons combined. As more research on the disease is indicating, Lyme is
far more than just a tick bite, a rash and some dizziness.
''People don't understand that Lyme can be a life-threatening illness,''
Hilliard said. ''If you're caught very early and treated, you stand a
very good chance of getting over it, but if you go several months
without knowing, the bacteria will just keep multiplying in every single
tissue and organ of your body.''
Hilliard said many Lyme sufferers have gone to scores of doctors all
with individual specialties - an often counterproductive measure given
that Lyme isn't easy to spot and has symptoms that don't fall under just
one medical discipline.
''Everything is so specialized now that if you have an orthopedic
problem, you go to an orthopedic doctor, if you have chronic headaches,
you go to another specialist, and on and on,'' Hilliard said. ''It's
hard for one person to pull the whole picture together, and Lyme affects
everything.''
Many of its symptoms are common to more than 300 different diseases,
including physically debilitating diseases like multiple sclerosis,
lupus, ALS, chronic fatigue syndrome, fibromyalgia and mental illnesses
like bipolarity. The Center for Disease Control and Prevention has
called the disease ''one of the fastest-growing epidemics in the
world.''
The Allergy Research Group estimates Lyme disease could be an
unconsidered, but contributing factor to some 50 percent of chronically
ill people in the United States who don't know why they are ill.
''It's very common, and often very difficult to diagnose,'' said Dr.
Jean Hubbuch, a family practitioner in Newton who has diagnosed phantom
cases of Lyme. ''There is a lot of controversy - there are people that
have had Lyme disease for years.''
In Hilliard's case, she said many doctors were reluctant to discuss the
disease - either from a lack of knowledge or for ongoing medical debates
on just how dangerous it is.
''It's a very political disease. Doctors often disagree on how best to
treat it,'' she said.
According to the Center for Disease Control and Prevention, 23,763 cases
of Lyme disease were reported in humans in 2002. That does not count the
number of cases that went unreported or undetected, which the CDC
estimates is nine out of 10 cases every year. The American Lyme Disease
Foundation released a report in April saying cases of Lyme disease in
the United States have increased every year since 1990, and in 2004 are
expected to set record numbers yet again.
Along with other local Lyme sufferers and awareness advocates, Hilliard
founded the Lyme Disease Association of Massachusetts, which meets as
often as its members are able.
''Several of us would get together when we felt up to it,'' Hilliard
said of the association, which includes Lyme victims and awareness
advocates.
The 40-member group responds to queries from around the country and even
internationally, and works with local and national awareness groups,
including the Cape Cod-based Massachusetts Lyme Disease Coalition.
''The mission and the goal is to educate people and to increase
awareness of the disease,'' she explained. ''Especially outdoor people
who are exposed to the elements: public service workers, fishermen,
hunters, joggers, mountain climbers.
''Worldwide, there are 850 different kinds of tick species - five in the
United States. Dogs are 50 percent more susceptible to ticks than humans
are.''
Hilliard visits school systems, most recently a June visit to Hanson
elementary school, to educate children and adults. Arming yourself with
knowledge is a key to fighting this disease, she said.
Hilliard hopes to raise awareness and help to reduce the amount of Lyme
infections. In her case, though, she takes life one day at a time.
''I don't know if you ever really learn to live with it,'' Hilliard
said. ''It's a different kind of pain and a new challenge every day. It
skips around your body. One day it'll be a sharp pain in your arm or
wrist, another (day it is) stiffness in your leg or back, other days
headaches and dizziness. It's neurological, and it's a series of good
days and bad days.''
HOW LYME DISEASE IS SPREAD
Lyme disease is a bacterial infection spread by the bite of an infective
tick. The infection is caused by a spirochete named Borrelia
burgdorferi. Not all ticks are infected, nor capable of transmitting
this bacteria. The bacteria cycle is maintained long-term by animals in
nature, whereby certain species of ticks bite infected wild animals,
ingest the bacteria, then transmit the infection to other wild animals
through subsequent feedings. Humans and pets are incidental hosts to
ticks.
Tick tactics: avoiding lyme disease
- If possible, keep out of infested areas - fields and marshes are
havens for ticks
- Wear light-colored clothing to spot ticks more easily
- Wear long-sleeved shirts and pants and tuck long pant legs into boots
- Use an insect repellent that contains DEET on your skin and clothing
- Wash clothing after being outdoors, dry at a high temperature
- Shower and inspect your body for ticks
IF YOU ARE BITTEN BY A TICK
-Grab the tick by the head (not the body) with sharp tweezers, as close
to the skin as possible and pull it away slowly
- Avoid squeezing the tick, and place it in alcohol (flushing it down
the toilet will not kill it)
- Clean the bite wound thoroughly with a disinfectant, then water
- Wash hands thoroughly
- If symptoms develop, see a doctor immediately
COMMON SYMPTOMS OF LYME DISEASE
Intense fatigue
Diminished or absent reflexes
Brain fog
Depression
Insomnia or excessive sleep
Joint pain/swelling/ stiffness
Slow or slurred speech
Unexplained chills and fevers
Rash
Tremors
Disorientation
Drastic weight changes (loss or gain)
Nausea/vomiting
Sore throat/swollen glands
Headaches/migraines
Menstrual irregularities
Heart palpitations/ chest pain
For more information, visit www.lymehelp.org, or E-mail
***@comcast.net. For general information about Lyme disease,
go to <http://www.cdc.gov> www.cdc.gov.
Chad Berndtson can be reached at ***@ledger.com
Copyright 2004 The Patriot Ledger
Transmitted Tuesday, July 27, 2004
LYME DISEASE: Phantom plague - This tick-borne illness can fool even
experts
Linda Hilliard of Walpole, a nurse anesthetist, suffers from Lyme
disease and founded the Lyme Disease Association of Massachusetts. (LISA
BUL/The Patriot Ledger)
By CHAD BERNDTSON
The Patriot Ledger
When Linda Hilliard was first diagnosed with Lyme disease, she had
already had it for nearly a decade. She still doesn't know quite when or
where she was bitten - the Lyme vector is the black-legged deer tick -
but, 20 years later, she is sure it did happen.
''Like most people, I went undetected - I had it for 10 years before I
got a diagnosis, and I had all the typical symptoms,'' Hilliard said.
''I didn't have a single rash during those first 10 years, but I did
have headaches every day, a Bell's palsey, loss of sight, dry eyes,
conjunctivitis, an irritable bladder and lots of nausea,'' she said.
''And then a lot of the typical stiffness - a painful neck, jaw pain,
sore throats, problems swallowing, general malaise. I often just wanted
to go home from work and get under the electric blanket.''
The problem with Lyme disease, and the reason why Hilliard's story is so
common to its sufferers, is that almost all of Lyme's most prevalent
symptoms are also common to other, more easily diagnosed diseases.
Hilliard, 60, is a nurse anesthetist originally from Columbus, Ohio. She
later lived in New Jersey and spent two years in Germany, and then in
Milford, Medfield, Sharon and now Walpole. She isn't sure where she was
bitten, but suspects it was during one of her family's summer visits to
Plymouth.
She has lived with Lyme disease for two decades, and both her daughter
and granddaughter are also Lyme sufferers. Although heavy doses of
antibiotics slowed the progress of the disease after it was confirmed 10
years ago, Hilliard remains afflicted and probably will be for the rest
of her life.
''Twenty years ago, people knew nothing about Lyme disease,'' Hilliard
said. ''Certainly the medical students then never learned about it, they
didn't teach about it in medical school. Infectious disease doctors
didn't know much about it.''
Among other difficulties, including an adult onset of asthma and cardiac
irregularities, the Lyme bacteria also lodged itself in her knee, and
after years of swelling and doctors draining it of fluid, she finally
had to have a full-on knee replacement, and says the same thing now
seems to be happening to her other knee. Most symptoms, in fact, persist
and are a daily struggle for Hilliard.
''My hand is in a splint now, because it's so painful. The pain shoots
up to my elbow and into my shoulder. I have spinal cord deterioration,''
she said. ''I feel, and a lot of people agree, that Lyme disease does
destroy bone and cartilage. Practically every statement I could make
about the disease would have disagreement, but I've been in this
business for so long.''
New Englanders and residents of the Northeast in general are especially
susceptible to tick bites because of the area's abundance of woodlands
and forests, and more cases occur in the summer than all three other
seasons combined. As more research on the disease is indicating, Lyme is
far more than just a tick bite, a rash and some dizziness.
''People don't understand that Lyme can be a life-threatening illness,''
Hilliard said. ''If you're caught very early and treated, you stand a
very good chance of getting over it, but if you go several months
without knowing, the bacteria will just keep multiplying in every single
tissue and organ of your body.''
Hilliard said many Lyme sufferers have gone to scores of doctors all
with individual specialties - an often counterproductive measure given
that Lyme isn't easy to spot and has symptoms that don't fall under just
one medical discipline.
''Everything is so specialized now that if you have an orthopedic
problem, you go to an orthopedic doctor, if you have chronic headaches,
you go to another specialist, and on and on,'' Hilliard said. ''It's
hard for one person to pull the whole picture together, and Lyme affects
everything.''
Many of its symptoms are common to more than 300 different diseases,
including physically debilitating diseases like multiple sclerosis,
lupus, ALS, chronic fatigue syndrome, fibromyalgia and mental illnesses
like bipolarity. The Center for Disease Control and Prevention has
called the disease ''one of the fastest-growing epidemics in the
world.''
The Allergy Research Group estimates Lyme disease could be an
unconsidered, but contributing factor to some 50 percent of chronically
ill people in the United States who don't know why they are ill.
''It's very common, and often very difficult to diagnose,'' said Dr.
Jean Hubbuch, a family practitioner in Newton who has diagnosed phantom
cases of Lyme. ''There is a lot of controversy - there are people that
have had Lyme disease for years.''
In Hilliard's case, she said many doctors were reluctant to discuss the
disease - either from a lack of knowledge or for ongoing medical debates
on just how dangerous it is.
''It's a very political disease. Doctors often disagree on how best to
treat it,'' she said.
According to the Center for Disease Control and Prevention, 23,763 cases
of Lyme disease were reported in humans in 2002. That does not count the
number of cases that went unreported or undetected, which the CDC
estimates is nine out of 10 cases every year. The American Lyme Disease
Foundation released a report in April saying cases of Lyme disease in
the United States have increased every year since 1990, and in 2004 are
expected to set record numbers yet again.
Along with other local Lyme sufferers and awareness advocates, Hilliard
founded the Lyme Disease Association of Massachusetts, which meets as
often as its members are able.
''Several of us would get together when we felt up to it,'' Hilliard
said of the association, which includes Lyme victims and awareness
advocates.
The 40-member group responds to queries from around the country and even
internationally, and works with local and national awareness groups,
including the Cape Cod-based Massachusetts Lyme Disease Coalition.
''The mission and the goal is to educate people and to increase
awareness of the disease,'' she explained. ''Especially outdoor people
who are exposed to the elements: public service workers, fishermen,
hunters, joggers, mountain climbers.
''Worldwide, there are 850 different kinds of tick species - five in the
United States. Dogs are 50 percent more susceptible to ticks than humans
are.''
Hilliard visits school systems, most recently a June visit to Hanson
elementary school, to educate children and adults. Arming yourself with
knowledge is a key to fighting this disease, she said.
Hilliard hopes to raise awareness and help to reduce the amount of Lyme
infections. In her case, though, she takes life one day at a time.
''I don't know if you ever really learn to live with it,'' Hilliard
said. ''It's a different kind of pain and a new challenge every day. It
skips around your body. One day it'll be a sharp pain in your arm or
wrist, another (day it is) stiffness in your leg or back, other days
headaches and dizziness. It's neurological, and it's a series of good
days and bad days.''
HOW LYME DISEASE IS SPREAD
Lyme disease is a bacterial infection spread by the bite of an infective
tick. The infection is caused by a spirochete named Borrelia
burgdorferi. Not all ticks are infected, nor capable of transmitting
this bacteria. The bacteria cycle is maintained long-term by animals in
nature, whereby certain species of ticks bite infected wild animals,
ingest the bacteria, then transmit the infection to other wild animals
through subsequent feedings. Humans and pets are incidental hosts to
ticks.
Tick tactics: avoiding lyme disease
- If possible, keep out of infested areas - fields and marshes are
havens for ticks
- Wear light-colored clothing to spot ticks more easily
- Wear long-sleeved shirts and pants and tuck long pant legs into boots
- Use an insect repellent that contains DEET on your skin and clothing
- Wash clothing after being outdoors, dry at a high temperature
- Shower and inspect your body for ticks
IF YOU ARE BITTEN BY A TICK
-Grab the tick by the head (not the body) with sharp tweezers, as close
to the skin as possible and pull it away slowly
- Avoid squeezing the tick, and place it in alcohol (flushing it down
the toilet will not kill it)
- Clean the bite wound thoroughly with a disinfectant, then water
- Wash hands thoroughly
- If symptoms develop, see a doctor immediately
COMMON SYMPTOMS OF LYME DISEASE
Intense fatigue
Diminished or absent reflexes
Brain fog
Depression
Insomnia or excessive sleep
Joint pain/swelling/ stiffness
Slow or slurred speech
Unexplained chills and fevers
Rash
Tremors
Disorientation
Drastic weight changes (loss or gain)
Nausea/vomiting
Sore throat/swollen glands
Headaches/migraines
Menstrual irregularities
Heart palpitations/ chest pain
For more information, visit www.lymehelp.org, or E-mail
***@comcast.net. For general information about Lyme disease,
go to <http://www.cdc.gov> www.cdc.gov.
Chad Berndtson can be reached at ***@ledger.com
Copyright 2004 The Patriot Ledger
Transmitted Tuesday, July 27, 2004