LYME DISEASE - DON'T LET IT HAPPEN TO YOU
SOMETHING OLD, SOMETHING NEW
LYME DISEASE - DON'T LET IT HAPPEN TO YOU
By Ron Ferris, Calgary , Alberta
Ron Ferris has been a research assistant for the Vancouver Lyme
Borreliosis Society for several years. He has spent nearly a decade
learning about Lyme disease and has published numerous articles on this
subject.
This article appeared in the Calgary Herald, September, 1995
A myserious illness initially misdiagnosed as juvenile rheumatoid
arthritis first surfaced in the Lyme, Connecticut region of the United
States 20 years ago.
After "Lyme arthritis" became associated with a particular red-ringed rash
that appeared three to 30 days after a person had been bitten by a tick,
many thousands of deer ticks in the region were dissected. No disease
agent could be found over a six-year period.
Likewise, when human Lyme arthritis rashes were examined, no pathogen
could be found although a typical immune response could always be seen.
By late in the 1970's and early 1980's, Lyme disease or LD began to be
diagnosed in California, a continent away from Connecticut. Wisconsin and
Minnesota soon followed.
By 1982, it became apparent that LD affected the heart, liver, eyes,
brain, nerves inside and outsidethe spinal cord and many other systems.
Some Lyme patients became very ill and some became permanently debilitated
or disabled. Some died.
A medical mystery ended when Lyme disease was finally demonstrated to be a
tick-borne bacterial infection, caused by a spirochete, a corkscrew-shaped
bacterium of the class Borrelia. When microbiologists studied this
bacterium's DNA, they soon discovered that the Lyme spirochete was a
completely "new" organism.
The species was then named Borrelia burgdorferi, in honr of Dr. Willy
Burgdorfer, a medical entomologist with the US National Institutes of
Health who made the initial discovery.
As a result of Burgdorfer's discovery, European doctors and
microbiologists began to take a second look at several tick-borne disease
processes preceded by a red-ringed rash. These illnesses had been around
in Scandinavia, Germany, France and Central Europe for more than a
century.
As in the USA, Borrelia burgdorferi, or Bb, was soon found among European
ticks similar to the American deer tick.
LYME SYMPTOMS VARY
--------------------
Lyme disease often starts with a vague feeling of general malaise,
listlessness, increasing fatigue, fevers and flu-like symptoms - after
which the patient typically never really becomes well again.
Only a few people are ever aware that they have actually been bitten by a
tick.
Sudden, mild to severe headaches may occur. Numbness or tingling or
paralysis on one side of the face (sometimes both) known as Bell's palsy
is so frequently associated with LD, as is meningitis and sudden
sensitivity to light in one or both eyes.
Several weeks to a month or so after infection, some patients start to
experience heart problems - chest pain, rapid heart beat, irregular heart
rhhythms and sometimes, heart block. Even with no diagnosis and
treatment, most Lyme heart problems disappear spontaneously over time. In
some instances, however, the effect on the heart is serious enough that a
pacemaker must be used to prevent death.
As Lyme disease spreads into different organ systems, a plethora of
different symptoms frequently occur, so much so that many Lyme patients
get branded as either hypochondriacs or malingerers.
Pain in muscles, ligaments and tendons, joints and long bones might be in
the shoulders and thighs one day, the hands the next, and the long bones
of the arms and ribs on a third day. Lyme - long known to cause sudden
and repeated swelling of the joints, particularly the knee - also can
cause joint pain with no swelling.
LYME DISEASE IS WIDESPREAD
---------------------------
Six international conferences since 1980 have revealed that Lyme disease
occurs, more or less regularly, worldwide.
Britain, all of Scandinavia, western, central and eastern Europe, all of
the former Soviet Union from the Baltic to the Pacific, northern China,
northern Japan, North Africa, the east coast of Australia and 45 US states
are just some places where LD occurs.
Since 1988 in Canada, human Lyme disease acquired by tickbite has been
firmly diagnosed in New Brunswick, Quebec, Ontario, Manitoba and British
Columbia.
In Alberta, the Lyme disease spirochete was discovered last summer in five
of six rabbit ticks collected from a single rabbit in Grande Prairie.
This shows at least that Borrelia burgdorferi (Bb) is cycling in nature in
the province, although these rabbit ticks very rarely bite other animals
or people.
Because Bb infection involves a spirochete, the disease process - like
syphilis, a venereal disease also caused by a spirochete - can become
severe. As with syphilis, Lyme symptoms can be anything and everything,
or nothing at all, for months to years after infection.
Unlike syphilis, the tests for Lyme disease aren't very good. Lyme
disease diagnosis is complicated by the fact that the bacteria seem to
disappear almost completely after entering the body.
Isolating the disease-causing organism in humantissue becomes extremely
difficult. A further complicationis that the average Lyme patient doesn't
showpositive antibodies against Bb infection for at least four to six
weeks after the infected bite - and may actually never become Bb antibody
positive.
THE NEW GREAT PRETENDER
-------------------------
More than 10,000 medical papers on Lyme disease (LD) now exist. But, even
as the knowledge surrounding Bb infection increases, Lyme continues to be
an infectious diseases' puzzle.
In 1977, it was assumed that 75 percent or more of all Lyme patients would
always exhibit the Lyme rash as an initial sign of infection. Now, the
actual figure is probably closer to 50 or 60 percent (only 16 percent in
Finland).
Many Lyme rashes that do form are misdiagnosed, even by dermatologists.
LD rashes don't have to look like much, or be round and red and like a
bull's eye.
Another problem: Lyme tests can cross-react with other comon infections,
and produce false positive results. Even a two-week course of oral
antibiotics may then cause a Lyme patient to test negative for the rest of
his or her life, even as the infection persists.
The most troubling and most mystifying aspects of LD are its effects on
the nervous system and central nervous system.
Hands and fingers, or feet and toes, may twitch or go numb again and again
although neurological exams often remain normal. Gait disturbances and
sudden paralyses - usually reversible - sometimes occur.
Vision may blur or become doubled. Sharp "electric" pains may suddenly
rip through the body.
Lyme-induced twitching of muscle groups mimics Lou Gehrig's disease. Lyme
also mimics multiple sclerosis symptoms in the numbness and tingling and
burning of nerves controlling limbs, eye problems, urinary problems and
severe fatigue.
There's goods reason why Lyme has been called the New Great Pretender.
Leading misdiagoses for LD include juvenile rheumatoid arthritis,
rheumatoid arthritis, fibromyalgia, systemic lupus erythematous and
chronic fatigue syndrome. Attention deficit disorders and mild to severe
psychiatric disorders also have had Lyme as the actual underlying cause.
For more than a decade, medical and scientific communities have been
divided into two camps over Lyme disease. The first camp holds that LD is
easily diagnosed, treated and cured if the patient actually has the
disease and that Lyme is vastly over-diagnosed. The second camp states
that Lyme is difficult to diagnose and cure, and that it is vastly
under-diagnosaed.
LATEST RESEARCH FINDINGS
-------------------------
Earlier this year (1995), the Lyme Disease Foundation, based in Hartford,
CT., in conjunction with the Vancouver-based BC Lyme Borreliosis Society,
met in Vancouver for the eighth annual scientific conference on Lyme
disease. Physicians, veterinarians, and microbiologists from 15 countries
attended.
Peer-reviewed scientific evidence presented at the conference confirmed
that tests for Lyme disease remain "poor at best". There are at least 23
strains in the US and at least 81 other strains worldwide, and many
separate strains likely act quite differently from what's expected.
When Bb enters the human body and is attacked by the immune system, the
spirochete seems to assume the many dozens of shapes and forms of the
syphilis spirochete, first identified by French researchers in the 1920's.
European laboratory evidence showed that Bb routinely penetrates white
blood cells, fibroblasts (connective tissue cells, present in every organ)
and - something new- the Langerhan's cells which produce insulin in the
pancreas.
What this means is that the Lyme spirochete actually hides itself inside
those very cells - the white blood cells - that are supposed to identify
it and trigger the immune system's response.
Conference participants were also reminded that no one in the medical
community knows which antibiotic regimen is most effective against LD
human infection.
One approach - yet to be tried - is to do large clinical studies of LD
patients, using short-term and long-term antibiotics. Results would be
compared as to which patient group did better, and which single antibiotic
or combination thereof performed the best.
Participants also learned that a LD vaccine trial among 10,000 healthy
human volunteers has started on the US east coast. The hope is that
vaccinated volunteers in highly endemic Lyme disease areas will be
protected against tickbites as people cut their lawns, hike and picnic at
the beach. Results won't be known for several years.
MORE RESEARCH REQUIRED
------------------------
In a day and age where it is expected that medical tests can rule out an
infectious disease process, Lyme disease continues to defy established
rules.
Lyme is a truly terrible infection which too often debilitates, cripples
and, in some instances, kills its victims. the key point is that certain
tick species act as vectors for Lyme, and that tick bites should never be
treated in a cavalier manner.
In the most highly endemic Lyme disease areas of the world, far less that
150 people per 100,000 receive a diagnosis of active Lyme disease each
year. On the other hand, the microbiologist who first grew Bb in the
laboratory has stated that every Lyme patient diagnosed means 10 others go
undiagnosed.
For example, a 1991 Swedish study, involving healthy volunteers with no
symptoms at all, indicated that some seven percent of the population in
and around Stockholm had demonstrable antibodies to Borrelia burgdorferi
in their blood.
No one really knows as musch as they could. Meaningful Lyme disease
research is a must - both after the fact elsewhere - and, in areas like
Alberta, before the fact.
Until proven otherwise, the very best way to avoid Lyme disease is to
avoid tickbite.
PREVENTION......TAKING THE BITE OUT OF LYME DISEASE
-------------------------------------------------
1. Avoid tick habitats.
Walk along cleared or paved surfaces rather than walking on grass or in
the woods.
2. Dress properly if you must go into tick habitats.
Wear long-sleeved shirts that button at the wrist, long pants tucked into
socks, and closed shoes. Choose light-coloured fabric so you can spot and
brush off ticks.
Apply approved tick repellent and use only as directed. Be cautious when
using repellent on children.
3. Tick check.
Always do regular tick checks when outdoors. Remove ticks promptly and
properly from yourself, family members and pets.
4. Proper tick removal.
Using fine-tipped tweezers, grasp tick close to the skin. Apply gentle,
steady straight upward pressure to remove. Disinfect the bite site. Save
the tick for testing. Put in a vial or ziploc bag with a blade of grass.
Contact your doctor for further instructions.
Manage tick habitats.
If you live in an area in which deer ticks are common, mow the weeds and
grass around the house. Try to discourage birds or animals that may
harbor the ticks from coming near the house. For example, move bird feeds
away from homes to eliminate food sources for mice and other rodents.
Remove piles of stones and other debris that can harbor mice and stack
firewood and lumber away from the house.