LYME DISEASE AWARENESS MONTH

* South Carolina Governor Jim Hodges recently signed a proclamation declaring May Lyme Disease Awareness Month. He urged that "all South Carolinians recognize Lyme disease as a public health threat and work together to raise awareness of the importance of early detection and treatment of this disease." Hence, the following story is a true story of one patient's struggle to be properly diagnosed and treated for Lyme disease. The late diagnosis lead to tremendous suffering for a man who was healthy prior to the tick bite. The story was told by the patient's daughter, who preferred to remain anonymous. *

"My father lived in the midlands of South Carolina his entire lifetime of 85 years. He and my mother were married for 60 years, had two children, six grandchildren and eight great-grandchildren. Employed by the South Carolina Department of Agriculture, he retired after many years of dedicated service.

"In the 1980's, my parents and I worked in the yard of our vacation home on Lake Murray. After returning home, I removed a tiny tick from my side, and several days later, I had a small bull's-eye rash, but no other symptoms. The maximum time the tick could have been attached was six hours! My father also found ticks, but knowing nothing about Lyme disease, we disregarded this early warning. We didn't know until much later that his tick bites caused the dementia and health problems that were to follow.

"In the late 1980's, he was misdiagnosed with Alzheimer's. The local doctors would not consider Lyme disease. They claimed it was not in South Carolina. Due to their closed minds and inaccurate data about the disease, my father had to suffer an agonizing illness for years. In 1992, a physician in New Jersey diagnosed late stage neuroborreliosis (Lyme disease of the central nervous system). He was given 10 days of intravenous treatment in a New Jersey hospital. We returned home and tried to continue the intravenous treatment with the help of a home health care company. Because of many complications (no local doctor to help, the advanced stage of the disease, our lack of knowledge, etc.) treatment was stopped. Though he had improved, his condition deteriorated again. If I had known as much about Lyme in 1992 as I know now, we would never have given up!

"Later, he entered the 'locked unit' of a nursing home near Columbia. My mother and I visited him at least three times a week for three and a half years. He had small strokes, another complication of Lyme, and lost his ability to talk, walk, feed himself, etc. He was restrained with a vest or 'chair tray' at all times to prevent falls. He could not speak, but we felt that he understood more than most people realized. He especially enjoyed having the great-grandsons visit and ride in the geriatric chair with him. He smiled when the boys came and was teary-eyed when they left. Toward the end, he was bedridden, only turning his head to follow us with his eyes. He also lost his ability to swallow.

"For a man who had always been so active, his condition was not living -- it was merely existence. Needless to say, his illness took its toll on all the family emotionally, physically and financially. Nursing home costs were over $150,000 -- none covered by medical insurance. Mother and I were with him when he died peacefully the day before Thanksgiving. Our prayers that he be relieved of his suffering had been answered.

"Words can not express how difficult it is to watch a loved one slowly die from Lyme disease -- a treatable illness that was diagnosed too late!"

According to Carol Black, spokesperson for the Lyme Disease Network of South Carolina, not everyone is affected as seriously as this man was.

"The types and severity of symptoms differ from person to person, and most all of the possible symptoms are linked to other commonly known diseases --Alzheimer's, heart disease, stroke and fibromyalgia, to name a few," Black said. "That causes misdiagnosis."

Consider this. Since 1980, the total number of Lyme disease cases reported in South Carolina is 90; while 604 have been reported in North Carolina and 1,177 have been reported in Georgia. "The thing that's interesting about that is that both of these states have about double our population, but the number of Lyme cases in North Carolina is six and a half times higher than in South Carolina, and in Georgia, the incidence is 13 times higher," Black said.

Can ticks detect state lines, or are doctors in South Carolina misdiagnosing the disease?

Obviously, something is awry.
"If a doctor tells you your Lyme test came back negative, that's not necessarily accurate," Black said. "The Center for Disease Control, the National Institute of Health and the Lyme Disease Foundation in Hartford, Conn., all agree that there are no medical tests that can disprove the presence of Lyme disease. That's why it is so difficult to diagnose."

"The diagnosis is clinical -- based on signs and symptoms," she said. "It is essential that doctors consider Lyme disease as a possibility."

Black quoted a doctor who told her, "When it comes to Lyme disease, there's a saying all doctors need to remember: 'If you hear hoofbeats behind you, don't assume it's a horse. It could be a zebra.'"

"In other words, look for the unusual. Don't always jump to easy conclusions," Black said.

"Some people who are very knowledgeable about Lyme disease have estimated that only one tenth to one twentieth of the actual cases are reported," Black said. "Officials at the Department of Health and Environmental Control have said that it's their experience that Lyme disease is not a problem, here (in South Carolina).

"But, at the Lyme Disease Network of South Carolina, we have had calls from all over the state. And our experience shows that it is a growing problem. It should be considered in diagnosing illnesses," Black said. "Early diagnosis can lead to early treatment with antibiotics. And, early treatment generally results in a better outcome, and less expense. Late diagnosis, on the other hand, can result in chronic infection, a need for longer term treatment and disability."

Anyone who would like further information can call the Lyme Disease Network of S.C. at 803-798-LYME. Too, a website is being developed and should soon be ready at the following address: www. sc-lyme.com. Call toll free 1-877-842-5488 for a Tick Removal Kit or information on testing. If you collect a tick from your body and would like it tested for the Lyme disease spirochete, send the live or recently dead tick with check or money order for $24.95 made out to TICK-ITT, P.O. Box 5133, Toms River, N.J. 08754. Up to 5 ticks on the same person or pet may be submitted for a single fee of $24.95. BBI-North American Clinical Laboratories in New Britain, Conn., 1-860-225-1900, also tests collected ticks.

What is Lyme disease?

Lyme disease is an infection caused by a spirochete, which is a bacteria that appears spiral in shape. The Lyme spirochete is known as Borrelia burgdorferi.

The disease is most commonly transmitted by the bite of an infected deer tick or lone star tick, which are usually found in yards, wooded areas and tall grass. Deer, white-footed mice and other wild animals serve as "reservoirs" of the Lyme disease spirochete. Ticks become infected with the bacterium by feeding on infected animal hosts.

Black noted that persons with Lyme disease may not actually recall having a tick bite as ticks are often very small, the bite is usually painless, and ticks can bite and fall off with the host being unaware. Some tick bite victims get a bull's eye rash within two to 31 days after infection, but the rash often disappears within days or a few weeks (though it can reoccur). This rash is the most common and visible characteristic, but not the only marker, of Lyme disease. That's why it is unfortunate that up to 50 percent of patients never develop a rash.

"If you do get the rash, take pictures and see your doctor right away," Black said. "If you collect a tick from your body or your child's or pet's body, have the tick tested for Lyme."

Lyme disease and other tick-borne illnesses can be a year round problem. Ticks are very active in the spring and summer, but April through October is considered "tick season."

Symptoms and treatment

Because Lyme disease symptoms can imitate other diseases, it can easily be misdiagnosed.

Lyme disease usually starts with flu-like symptoms -- headache, stiff neck, fever, muscle aches or fatigue. About 60 percent of light-skinned patients notice a unique Lyme rash, referred to as "erythema migrans" (EM), days to weeks after the bite. Some people do not notice these early indicators of infection. Early symptoms usually disappear, and serious multi-systemic problems may start later:

Brain: As Lyme disease progresses, nerve condition defects such as weakness or paralysis of the limbs, loss of reflexes and tingling sensations of the extremities may occur. Victims may also suffer severe headaches, stiff neck, meningitis or cranial nerve involvement such as: a change in smell or taste; difficulty chewing, swallowing or speaking; hoarseness or vocal cord problems; facial paralysis; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; or a change in hearing. Stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes such as memory problems, confusion and decreased concentration, and behavioral changes such as depression and personality changes are other common symptoms.

Eyes: Vision changes may include: blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before the eyes, inflammation of various parts of the eye, pain, double vision, deviation of eyeball (wandering or lazy eye), drooping eyelid and light sensitivity.

Skin: A victim may have one or more rashes. Erythema migrans (EM) or a bull's-eye rash is a skin discoloration that varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). Multiple rashes per bite or rash(es) not at the bite site are an indication of disseminated disease. Later skin problems include lymphocytoma, which is a benign nodule or tumor, and acrodermatitis chronica atropicans (ACA) which is discoloration/degeneration usually of the hands or feet.

Heart and blood vessels such as the following may occur: irregular beats, heart block, myocarditis, chest pain and vasculitis.

Pregnancy: Pregnant women infected with Lyme may suffer miscarriage, premature birth, stillbirth and neonatal deaths (rare). Congenital Lyme disease has been described in medical literature.

Other symptoms: Joint pain or swelling, intermittent or chronic, may occur. Some people suffer difficulty breathing and/or pneumonia, muscle pain, inflammation, cramps and loss of muscle tone, nausea, vomiting, diarrhea, loss of appetite and/or anorexia, and tenderness and enlargement of the spleen.

Treatment: Lyme disease is commonly treated with antibiotics taken orally or intravenously.

| Home | S.C. News | Ticks - Facts, Diseases, Pictures, Map |
| Tick Removal and Removal Tools | Links | Story of Lyme Symbol |