My Journey
with
Lyme
INTRODUCTION TO LYME
I find that most people know very little about this disease - even many of my doctors! For those of you who only know it comes from a tick and not much more, here is some more info!
01
What is Lyme Disease?
Lyme disease is an infection caused by a spirochete (say “SPY-ROH-KEET”) that humans can get from the bite of an infected deer tick. The spirochete’s scientific name is Borrelia burgdorferi. Lyme disease is called “The Great Imitator” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
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How do people get Lyme Disease?
People usually get Lyme disease from ticks infected with Lyme spirochetes. Most human cases are caused by the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because their bite is painless, many people do not realize they have been bitten.
Ticks may remain attached for several days while they feed. The longer they remain attached, the greater the risk that they will pass the Lyme bacteria into your bloodstream, where they will start spreading throughout your body.
Recent studies show that there are many other possibilities for transmission, including human to human.
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Where can Lyme Disease be found?
Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the east, midwest, and west coast. Most people are led to believe it is found only on the east coast, when in truth, it is turning up everywhere! This is a nationwide and worldwide epidemic!
Not all ticks are infected. Within endemic areas, there is considerable variation locally, depending on type of habitat, presence of wildlife, and other factors. In the south, a Lyme-like disease is called STARI (Southern Rash-Associated Tick Illness).
In addition to the variation that occurs in nature, there is also variation in how aggressively the states have tested ticks for infection. Thus, many times the reported incidence of infected ticks reflects the fact that the state has done little or no testing of ticks in the area. The maps below show a dramatic increase in the number of states reporting Lyme to the Centers for Disease Control for the years 1985, 1987, and 1992. Some of this increase may be because of disease spread, but it is also likely that it reflects growing public awareness of the disease.
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Early Lyme
Early in the infection, many people experience a flu-like illness that may clear up without treatment. Some people get a rash around the site of the tick bite. Most of the time the rash is an ordinary red area, however if it is a bull’s-eye shape with a darker edge, it is a definite sign of Lyme disease and needs immediate treatment. Unfortunately this distinctive rash is uncommon.
The Lyme rash starts a few days or even several weeks after the bite and then expands over a period of days to several inches across, perhaps with a central clearing. Untreated, it can last for weeks before fading, or it may fade and recur. The rash may have an irregular shape, blisters or a scabby appearance. Some rashes have a bruise-like appearance. Lyme rashes can mimic spider bite, ringworm, or cellulitis. Multiple, so-called “satellite” rashes may appear on different parts of the body. If you develop a rash, take a photo of it and see a doctor as soon as possible.
Your doctor may want you to have a blood test to confirm that the rash is actually a Lyme rash. People with early Lyme disease do not develop the antibodies necessary for the diagnostic tests for several weeks, and, early testing can give false negative results because of this. Although all medical treatment has some risk, treatment with antibiotics is relatively safe. Waiting for test results gives the spirochetes additional time to invade your body. Your doctor should explain the risks so you can make an informed choice.
07
Late Stage Lyme Disease
If Lyme disease is not diagnosed and treated early, the Lyme spirochetes can spread and may go into hiding in your body. Weeks, months or even years later you may have problems with your brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Symptoms may disappear even without treatment and different symptoms may appear at different times.
Diagnosis is clinical and is based primarily on recognition of the typical symptoms of Lyme disease in a person who lives in a high-risk area. Doctors like to have hard evidence to back up their opinions, but testing is not an exact science: the tests for Lyme disease may sometimes be negative in cases where disease is actually present, and false positive tests, though less common, are also possible. Therefore, experienced doctors recommend that Lyme disease be diagnosed clinically, meaning they base the diagnosis on an evaluation of your risk and your symptoms.
People with chronic Lyme disease may be misdiagnosed with more familiar conditions with symptoms that mimic Lyme disease. Since scientists have not figured out the cause of these diseases and treatment does not call for antibiotics, the underlying Lyme infection is allowed to progress unchecked. And the longer a person goes without being diagnosed and treated, the worse the symptoms get. Unfortunately, because of a lack of education to our doctors and inaccurate testing, most people that have Lyme go undiagnosed or misdiagnosed for years. Chronic Lyme is INCURABLE and can often times be fatal.