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natural therapy. You will find more on fibromyalgia
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FIBROMYALGIA AND LYME DISEASE:
ONE OFTEN MISTAKEN FOR THE OTHER
Magazine: Health Facts, October 1992
Many people seeking treatment for and being diagnosed as having Lyme
disease actually have an arthritis-like ailment called fibromyalgia,
according to a news release from the American College of Rheumatology. Two new studies
showing the extent of misdiagnosis were presented this month at the College's annual
meeting.
Lyme disease was first recognized over 17 years ago when several children
living in Lyme, Connecticut, developed what was initially thought to be rheumatoid
arthritis. The disease is caused by a coiled bacterium--a spirochete--called Borrelia
burgdorferi (named for its discoverer, Dr. Willy Burgdorfer). The spirochete is carried to
humans via tiny ticks that feed on animals, such as white-footed mice and white-tailed
deer. It is not transmitted from human to human.
The misdiagnosis of Lyme disease, which many experts now believe to be a
common occurrence, has adverse consequences. For example, long-term antibiotic therapy,
the standard treatment for Lyme disease, is not only useless to people with fibromyalgia,
but also subjects them needlessly to the risk of side effects like superinfection of the
vagina, intestine, or mouth due to an overgrowth of bacteria.
In one study reported at the American College of Rheumatology meeting,
only six of the 92 people seeking treatment for Lyme disease at the Rush Lyme Center in
Chicago truly had the ailment. The other study involved 700 adults seen at a Lyme center
in New Jersey; 77 of them actually had fibromyalgia.
There are several reasons why Lyme disease is so difficult to diagnose.
For example, the tell-tale red circular rash develops around the tick bite in only 75% of
cases. Many of the symptoms--fatigue, mild headache, pain and stiffness in muscles and
joints, slight fever, swollen glands-are similar to those of fibromyalgia
and several other ailments. Furthermore, the blood test for Lyme disease is highly
inaccurate.
The Journal of the American Medical Association recently reported results
of a testing program of 45 laboratories, which were randomly sent blood samples from
people with and without Lyme disease. The investigators, Lori L. Bakken and colleagues at
the Wisconsin State Laboratory of Hygiene, found a wide variation in lab performance.
Between 4-21% failed to identify correctly the Lyme disease-infected samples. The false
positive rate, that is, the erroneous finding of disease in healthy samples, was as high
as 27%.
The Wisconsin investigators concluded: "Our results indicate that
there is an urgent need for standardization of current testing methodologies. Until a
national commitment is made, blood testing for Lyme disease will be of questionable value
for the diagnosis of the disease."
The growing recognition of Lyme disease misdiagnoses has spotlighted fibromyalgia
(formerly called fibrositis), a chronic ailment about which little is known. Some of its
symptoms--muscle and joint pain, headaches, fatigue, sleep disturbances, numbness and/or a
tingling feeling--are similar to those of arthritis. However, the standard arthritis
treatments are ineffective for fibromyalgia because, unlike
arthritis, it does not involve inflammation.
The lack of inflammation means that fibromyalgia
does not cause the damage to joints and the risk of crippling associated with arthritis. Fibromyalgia
pain comes not from the joints but from adjacent ligaments, tendons, and muscles. The
diagnosis is usually made on the basis of symptoms because there is no lab test to
identify the presence of fibromyalgia.
To make diagnostic matters even more complicated, a recent study conducted
at the Tufts University School of Medicine in Boston found that some people have fibromyalgia
triggered by Lyme disease. Of 287 people treated at a Lyme disease clinic during a
three-year period, 22 had fibromyalgia associated with Lyme
disease (Annals of Internal Medicine, 15 August 1992).
The investigators, Hal Dinerman, M.D., and Allen C. Steere, M.D., of Tufts
University School of Medicine and the New England Medical Center, found that nine of the
people developed widespread musculoskeletal pain, tender points, dysethesias (impaired
sensation), memory difficulties, and debilitating fatigue. Their symptoms lasted an
average of 1.7 months after early symptoms of Lyme disease. The investigators noted that
the signs of Lyme disease resolved with antibiotic therapy, usually given intravenously
for two to four weeks, but the symptoms of fibromyalgia
persisted.
Doctors do not know what causes fibromyalgia or
why childbearing-age women make up the majority of those afflicted. Drs. Dinerman and
Steere summed up prevailing theories, noting that it can be triggered by various
infections, thyroid disease, head trauma, or emotional stress. Although it is an old
syndrome that has merely received increased attention in recent years, fibromyalgia
often goes unrecognized by physicians. They are likely to dismiss sufferers as
hypochondriacs and refer them to a psychiatrist after all available tests show that
nothing is wrong.
It is common for people with fibromyalgia to
have other disorders, such as spastic colon, Raynaud's phenomenon, premenstrual syndrome,
and headaches.
In one study of people with fibromyalgia, half
said their symptoms began after a flu-like illness. Many had been misdiagnosed as having
chronic fatigue syndrome(CFS). Yet another study suggested that CFS and fibromyalgia
may be one and the same.
Fibromyalgia is classified as a rheumatic
disease because it involves the body's connective tissues. Its old name,
"fibrositis," was judged inaccurate because the suffix -it is implies
inflammation, whereas-myalgia refers to muscle pain. Many people with fibromyalgia
find that the pain is initially localized to one part of the body, such as the neck, and
then becomes widespread.
Some comfort can be taken in the knowledge that fibromyalgia
is neither life-threatening nor degenerative. Complete remission occurs in about 25% of
cases.
Guidelines for Both Conditions
Guidelines for the diagnosis of fibromyalgia
were announced in 1989, and there are a variety of somewhat helpful treatments usually
chosen according to the consulting physician's preference. Lyme disease, on the other
hand, has an effective early-stage treatment, but uncertainties surrounding diagnosis have
produced disagreements about when it should be initiated. New treatment guidelines for
Lyme disease were published last summer.
Lyme Disease
The media attention given Lyme disease and its lasting painful effects has
aroused public panic over tick bites. Lab testing is known to be unreliable, and untreated
Lyme disease produces life- long debilitating symptoms that can progress to major cardiac,
neurologic, and rheumatologic complications.
Some physicians choose the conservative route, observing the individual
following a tick bite and prescribing doxycycline or amoxicillin only after symptoms of
Lyme disease appear. (Tetracycline and doxycycline cause permanent tooth discoloration
when given at the crucial developmental stage, thus, these antibiotics should not be
prescribed to children under the age of eight years or to pregnant or lactating women.)
Unfortunately, early signs of Lyme disease are similar to symptoms of numerous other
ailments, or they can be so minimal as to be overlooked completely.
Because antibiotics can cure most cases of Lyme disease in its early
stage, other physicians believe that the risk of delay is too great. Such physicians will
prescribe the two- to four- week course of antibiotics immediately following a tick bite.
But The New England Journal of Medicine recently published a new analysis which called
this practice into question. The risk of acquiring Lyme disease is actually quite small,
even in areas where the disease is prevalent, according to the new analysis conducted by
David Magid, M.D., University of Colorado Health Sciences Center in Denver, and
colleagues. They cite the only two available studies on the topic, both small in scale,
showing that infection occurs in only about 10% of all people bitten by infected ticks.
Preventive antibiotic therapy is not warranted in areas where the prevalence of infected
ticks is less than 1%, concluded Dr. Magid. (See "What You Can Do" on the next
page to learn about high- and low-prevalence areas.)
Even in high-risk areas of the country, like Eastern Long Island and
Westchester County, New York, only 5% of ticks carry the bacterium known to cause Lyme
disease. Although Dr. Magid took issue with the "treat everyone" practice, his
analysis determined that the risks of preventive antibiotics are probably outweighed by
the benefits for people who have been bitten by ticks in one of these extremely
high-prevalence areas.
This formula approach to prescribing preventive antibiotics therapy was
found wanting by Dr. David Dennis, coordinator of the Centers for Disease Control's Lyme
Disease Program in Fort Collins, Colorado. In a telephone interview, he pointed out the
gaps in Dr. Magid's guidelines. "What do you do with people who are repeatedly
exposed to tick bites? Are you going to keep pouring antibiotics into them? Also, [the new
analysis] didn't make clear to the public that it pertains to people with known exposure
to deer ticks.
Many people are bitten by ticks that play no role in the transmission of
Lyme disease."
"Our message is to check yourself daily and removed the tick
yourself. If a tick is removed before it has been attached for 36 hours, you have very
little chance of being infected, even if that tick was an infected deer tick, because they
just don't transmit the organism until they've been attached and engorged for 36
hours."
When asked about the role of preventive antibiotics for people in
high-prevalence areas like Westchester County, Dr. Dennis said, "We can't generalize,
but in most instances, `watchful waiting' makes sense to us, making sure the patient is
well informed. In most instances that infection, if it is there, will make itself known
and, if treated early, should be resolved with antibiotics without a problem." He
advocates individual decision-making with a physician. "We don't have any hard and
fast rules but we do know that risk of developing illness after exposure is pretty
small."
Fibromyalgia
Fibromyalgia is described in the medical
literature as a "syndrome," a label that usually signifies a major information
gap. The word syndrome refers to a collection of symptoms, the cause of which is unknown.
Rediscovered in 1977, fibrositis syndrome, as it was called then, began to generate a
spurt of research papers, now totaling well over 60.
It was not until 1986, however, that a consortium of research centers
interested in fibromyalgia syndrome began a study to develop
guidelines for accurate diagnosis. It concluded that the diagnosis of fibromyalgia
can be made in the presence of widespread pain, combined with mild or greater tenderness
when mild pressure is applied to 11 or more of 18 sites between the neck and the knees.
It is not known why these 18 sites are tender or why pressure applied near
them will cause no discomfort. The tender spots are very specific, which explains the
difficulty experienced by people with fibromyalgia who try the
pressure-point test on themselves. People with fibromyalgia have
periods of deep sleep disruption; researchers found that when deep sleep is disrupted in
healthy volunteers, they too develop extreme sensitivity in the same tender points. People
who think they may have fibromyalgia should seek a consultation
with a rheumatologist who is knowledgeable about the syndrome (see below).
"Women who call us have been misdiagnosed as having everything from
multiple sclerosis to schizophrenia," said a spokeswoman for the American College of
Rheumatology. She said that certain therapies will work for some people and not for
others. The numerous treatment possibilities can be described as somewhat effective, at
best.
Although corticosteroids and non-steroidal, anti-inflammatory drugs
(Motrin, Advil, etc.) are often prescribed, these drugs are ineffective in relieving the
pain of fibromyalgia. Acetaminophen (Tylenol) and low-dose
antidepressants, on the other hand, can be useful as painkillers.
Remaining active is crucial, and aerobic exercise has been shown in
studies to reduce pain and tenderness. An exercise program should begin slowly with
stretches and low-impact aerobic activity such as fast walking. The pain often worsens
temporarily once an exercise program is begun. Knowing that pain and sleep deprivation
interfere with the ability to exercise, some rheumatologists advise a regimented sleep and
exercise plan.