Minnesota Lyme Association: Why do we work so hard?
LYME DISEASE – THE BIG PICTURE
- Lyme disease is the fastest-growing vector-borne disease in the northern hemisphere. For 2010, the Centers
for Disease Control and Prevention (CDC) recorded 30,000 surveillance cases in the US but total case
numbers are unknown.
- Annual statistics report only a fraction of all cases. The CDC reports “surveillance cases” and the inclusion
criteria for this group are very strict. This allows the CDC to track and compare cases across several
parameters but it also means that many cases of Lyme disease are never counted. As stated on the CDC
website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to
define the entire scope of Lyme disease.
- The CDC also recognizes that under-reporting is common, estimating that annual surveillance cases numbers
are likely to be 10 times higher.
- Despite its stated intention, the CDC actually promotes a narrow definition of Lyme disease. The information it
provides to physicians is limited in scope and ignores a large body of scientific research. Misinformed
physicians under-diagnose Lyme disease on a grand scale.
- As documented in 4 National Institutes of Health (NIH) studies, people with Lyme disease may endure great
suffering. Symptoms are widespread and variable; they often worsen, leaving patients unable to attend school
or work. Some problems may persist following treatment. The societal costs of Lyme-related disabilities are
tremendous.
MINNESOTA
- On average, 1 in 3 black-legged ticks (deer ticks) carry Borrelia burgdorferi , the bacterial cause of Lyme
disease, but tick infection rates vary widely on state-wide and local levels. These ticks may also carry other
bacteria and parasites (referred to as co-infections), complicating the clinical picture.
- Once thought to be found only in wooded areas, black-legged ticks have expanded their range and are now
found across Minnesota, including the 7-county metro. They can be found in tall grass and in suburban edge
landscapes.
- Lyme disease has increased roughly 1800% in the past 10 years. The state ranks 8th in the nation, reporting
1,293 surveillance cases to the CDC in 2010.
- MN Department of Health (MDH) distributes inadequate information on tick-borne diseases to physicians,
limiting their knowledge and understanding of these complicated illnesses.
- The MDH funding for Lyme disease education and studies is less than the amount dedicated to West Nile and
other tick and mosquito-borne viruses ($215,000 and $261,000, respectively, in 2011). There were 8 cases of
West Nile reported in 2010.
DIAGNOSIS
- A rash may appear at the site within 2-3 days of a tick bite and is an indication of infection. The rash may be
oval or circular and uniformly colored, and may expand and clear over several days. The bull’s eye shape is
present in only 10-20% of Lyme rash cases. Not all people infected with Lyme develop a rash.
- Available blood tests for Lyme disease are unreliable. They are insensitive and often irreproducible.
- Lyme blood tests measure the level of antibodies directed against Borrelia burgdorferi. Measurable levels may
take 2-6 weeks to develop; thus, tests done early in infection may be negative, even when the bacterium is
present.
- If given early in the infection, antibiotics may turn off the antibody response prematurely, before adequate
levels are achieved. If treatment is inadequate, patients remain infected but their tests may be negative; this
clinical situation is called seronegative Lyme disease.
- Lyme disease is a clinical diagnosis, based on exposure to black-legged ticks, symptoms and exam findings.
Testing may confirm a diagnosis but it cannot rule Lyme disease in or out.
- Co-infections, such as babesia and anaplasma, are common in MN; their symptoms overlap those of Lyme
disease, further complicating the diagnostic process.
TREATMENT
- Borrelia burgdorferi can attack any system in the body, resulting in a wide and variable array of symptoms.
Treatment regimens are based on disease stage and the body systems involved.
- Borrelia burgdorferi is highly adaptable. Multiple animal studies and human care reports have demonstrated
persistent infections following commonly used antibiotic treatments.
- For these reasons, tick-borne infections require individualized care and treating physicians must use their
clinical judgment.
- Unfortunately, the CDC and MDH promote the use of rigid treatment regimens, based on a handful of flawed
studies, while simultaneously dismissing reports from patients and their treating physicians that contradict the
usefulness of such approaches.
- With few physicians adequately trained in the appropriate diagnosis and treatment of tick-borne diseases,
thousands of patients are left without access to the treatment they need, becoming sicker and less likely to
fully recover the longer they go without care.
MINNESOTA LYME ASSOCIATION
- Our mission is two-fold: to provide a supportive environment for people affected by Lyme and other tick-borne
diseases and to educate the public and health professionals in the prevention, diagnosis and treatment of
these diseases.
- To fulfill our mission, MLA:
- Hosts monthly support group meetings throughout the state
- Provides credentialed speakers covering a wide range of Lyme-related topics
- Sponsors accredited continuing education courses on tick-borne diseases for physicians and nurses
- Offers scholarships to physicians to attend the annual International Lyme and Associated Diseases
- Presents information on tick-borne diseases to the public via large-scale events such as the Minnesota
Horse Expo and Warner Nature Center Fall Color Blast, and smaller community-based gatherings
- Accepts speaking invitations from private clubs and organizations.
- Collaborates with lawmakers and elected officials on Lyme-friendly legislation and policies.
What should I do if I get bitten by a deer tick?
Since a high percentage of deer ticks in Minnesota carry the bacteria that causes Lyme, if you get bitten,
immediately seek the attention of a physician. To prevent infection, insist on 10-20 days of 100mg doxycycline twice
daily (the Lyme bacteria has been found to survive up to 19 days of doxycyline therapy).
When does the rash typically appear?
EM rashes typically appear 7–14 days after a bite (range, 3–30 days).
About 30-50% of patients exhibit a rash at the bite site.
Does it matter when I get treatment?
Early treatment is more likely to result in complete symptom relief.
Does where I live increase the risk of Lyme disease?
Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or
her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with
many opportunities for exposure to Lyme disease for each individual.
What about CDC surveillance for Lyme disease?
The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track
a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were
never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.
In 2006
913 confirmed Lyme disease cases
(17.7 cases per 100,000) were reported in MN alone.
2007
1,239 reported cases of lyme disease
322 reported cases of anaplasmosis
24 reported cases of babesiosis
2008
10 cases West Nile
1,043 Lyme
278 Anaplasmosis
28 Babesiosis
2010
Human anaplasmosis: 720 (more than double the 300-plus cases in recent years).
Babesiosis: 56, up from 31 in 2009.
Lyme disease: 1,293, up 21 percent from 2009 and slightly above the 2007 level of 1,239.
Reminder: Per the CDC, reported cases probably represent only 10-12% of actual cases.
States funding specifically for lyme disease surveilence?
The Minnesota Department of Health's current funding level for Lyme disease is $215,000 for 2011, which is
intended for Lyme disease monitoring and prevention. We do not have funds that are specifically targeted towards
Lyme disease research.
How much state funding is available specifically to monitor west nile?
Funding level for West Nile virus monitoring and prevention is $261,000 for 2011. Per the Minnesota Department of
Health.
Do other insects carry the Lyme bacteria?
Borrelia burgdorferi has been found in various blood-feeding arthropods, only ticks have been shown to be efficient
at maintaining and transmitting these spirochetes. Thus, we do not consider these other arthropods to be part of
the Lyme disease transmission cycle. Unfortunately there are plenty of blacklegged (deer) ticks in wooded portions
of central, east-central, and southeastern Minnesota. Per the Minnesota Department of Health
How long before the bacteria is transmitted?
The tick needs to be attached for at least 24-36 hours to transmit the bacteria. Attachment time does not need to be
as long on kids as an adult because kid’s skin is thinner and more blood vessels are closer to the surface.
If left untreated what are some things that can happen?
About 50% of untreated patients will have neurological complications, flu-like symptoms, and arthritis.
How do I prevent thrush?
To prevent thrush while on antibiotics, folks should take probiotics and eat yogurt. Some physicians also use
nystatin daily or fluconazole weekly to prevent yeast issues.
Will I always need to be on antibiotics for late stage lyme?
Many patients treated appropriately for late stage Lyme do reach a point where antibiotics are no longer needed
while others need only occasional episodic treatment.
What about insurance for long term antibiotics?
Many insurance companies operating in MN do cover Lyme treatment indefinitely, if ordered by a physician.
MYTH:
Lyme disease is hard to get and easy to cure.
FACT:
Lyme disease is the fastest growing tick-borne disease in the northern hemisphere. Most physicians don't
understand the complexities of tick-born disease or know how to treat them appropriately, leaving thousands of
people to suffer without adequate care.
MYTH:
Ticks aren't a problem in the winter, when it's too cold for them to live outside.
FACT:
In most areas of the country, high season for ticks runs from April to November. Experts recommend year-round
preventives, however, as infection can occur at any time of the year. In the winter, for example, some tick species
move indoors and are in even closer contact with pets and people, while others make a type of antifreeze to survive
during the winter months.
MYTH:
Ticks live in trees, so as long as I don't live near or visit a wooded area, I don't have to worry about them.
FACT:
Ticks live on the ground no matter the locale, be it an urban park or a rural area. They typically crawl up from grass
blades onto a host and migrate upwards, which is why they're often found on the scalp.
MYTH:
The best ways to remove a tick are with a lit match, fingernail polish or petroleum jelly.
FACT:
None of these methods cause the tick to "back out," and all of them may actually result in the tick depositing more
disease-carrying saliva into the wound, increasing the risk of infection.
Experts say the best way to remove a tick is to grasp it as close to the skin as possible with tweezers and pull the
tick's body out with a steady motion. Wear rubber gloves, and clean the skin with soap and water after removal.
Dispose of the tick by placing it in alcohol or flushing it down the toilet.
MYTH:
Lyme disease is the only illness that ticks can transmit to dogs and humans.
FACT:
Lyme is the most widely-known and common tick disease, but there are many others that ticks carry and can transmit
to dogs and people. These include Rocky Mountain spotted fever, anaplasmosis (sometimes known as "dog fever"),
ehrlichiosis and some emerging diseases with potentially devastating effects.
MYTH:
If I find a tick on myself or someone in my family, Lyme and other tick diseases can be ruled out immediately with a
blood test.
FACT:
According to the CDC, laboratory results for tick-borne illness in people are often negative on the first sample and
require a second test 2 to 3 weeks later to confirm infection. Further, children are more susceptible to infections due
to their immature immune systems.
Signs of Lyme are flu-like symptoms such as fever and malaise with or without a bulls-eye rash, but many people
(and dogs) with tick-borne illness don't experience any symptoms – especially in the early stages of the disease.
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