Editor's Note:

Kathy and Larry Cuddeback have been farming 366 acres in Washington County since 1980. Kathy was the part time Naturalist for 12 years with the Washington County Conservation Board. She was diagnosed with chronic Lyme disease in 1993, but knowledgeable lyme physicians believe she was first infected in 1977 while working in KY and TN. She struggles with 15 symptoms including chronic spinal pain, seizures, tourettes, memory loss, tremors, and speech loss. A special service dog assists her with seizure alert and walking problems. She has been on antibiotic treatment for 11 years, the last 4 years by IV method, which has slowed the progression of the disease. She has also tried all sorts of alternative treatments. Despite all these efforts the disease continues to control her life. Kathy and Larry have three children; their middle daughter has been diagnosed with congenital Lyme disease. She is severely handicapped. Kathyís goal is to educate Iowans about Lyme and other tick diseases to prevent congenital lyme disorders.



Lyme Disease: Donít be Scared, But be Aware

by Kathy Cuddeback, President of the Iowa Lyme disease Association.


In 1975, two Connecticut housewives notified the state of strange goings-on in the Lyme, Connecticut area. Family members and neighbors were being diagnosed at an alarming rate with arthritis, often associated with bizarre rashes and odd neurological symptoms. Doctors from Yale University investigated, and "Lyme disease" was born. But in fact, European doctors had known of the disease since the turn of the last century, and in the U.S. 100 yr.old infected laboratory mice have proven the bacteria has been in this country longer than we thought.

According to the US Centers for Disease Control and Prevention (CDC), Lyme disease or borreliosis is the fastest growing zoonotic disease; from 2001-2002 there was a 40% increase in cases surveyed, to 23,763 cases. The CDC acknowledges under-reporting. Reliable estimates are at least ten times those reported, or about 250,000 new cases per year - more than five times the annual number of new AIDS cases in the USA. According to these statistics, there are more than 2 million people with chronic Lyme borreliosis in the USA. No longer just a Connecticut curiosity, the disease has been found in every state; the majority of cases occur along the East Coast and in the north central states, including our neighbors, Wisconsin and Minnesota. Ticks do not stop at state lines.

Lyme disease is caused by a type of spirochete bacteria, called "borrelia burgdorferi". There are over 100 borrelia strains in the U.S., over 300 strains are found worldwide. This borrelia spirochete is a parasite, sustained in nature in the bodies of wild animals and transmitted from one animal to another by the bite of an infected tick. The black-legged tick, formerly called the deer tick is the most common carrier. The Lone star tick has recently been associated with a newly discovered borrelia strain, causing similar Lyme disease symptoms; known has Masterís Disease, named after Dr. Masters from Cape Giorodo, Missouri. His patients brought in Lone star ticks, removed from the bite. Many had bulls-eye rashes, early lyme-like symptoms and responded to antibiotic treatment. Dog or wood ticks have not yet been documented as vectors of Lyme disease by controlled studies, but are under suspicion by many researchers. A study conducted by the University of Missouri, Columbia, collected over 500 ticks and with a highly refined PCR test documented that this bacteria is more likely to be harbored in Lone star and dog ticks, than the black legged (deer) tick.

A tick has only three meals over the entire course of its life span of two years. This meal may last several days at which time the tick drops off and goes into the moist leaf litter. It will take weeks or months to digest this meal. After each period of digestion and change from one life stage to the next it goes in search of its next meal. In the larvae stage, the black-legged tick is tan, the size of a pinhead, and feeds on small animals like the mouse where it can pick up the spirochete. During the nymph stage the tick is the size of a poppy seed, beige or partially transparent, and feeds on larger animals such as cats, dogs and humans. The adult ticks are black and/or reddish and feed on cattle, deer, dogs and humans. The Lone Star tick is gray with a white dot. Ticks are light sensitive and cannot see the way we can, so they rely on their sense of touch. The first vertical object they bump into they climb. It may be a blade of grass, or a shrub at the edge of the forest. Here they will wait for the first warm-blooded creature to pass by and brush into them. They cannot fly, jump or drop onto anything. When a tick comes into contact with a warm-blooded creature they will find a spot to their liking and attach on it to feed. 

INFECTIOUS SOUP

During this feeding stage is when the tick can pass on disease. Evidence has been gathered where one tick can harbor several diseases, referring to them as an infectious soup. Babesiosis is a parasitic, malaria-like illness caused by a protozoon, sometimes fatal in the elderly or those with no spleen. Symptoms include fever, chills, fatigue, headache, muscle pain and anemia. Ehrlichiosis is an illness caused by intracellular parasites. Symptoms include fever, headaches, chills, severe muscle aches, seizures, and meningitis. Bartonella is caused by an intracellular bacterium that can be transmitted by either a cat bite or scratch or a tick bite. When present in combination with Lyme disease, atypical symptoms such as visual problems, headaches, lymph node enlargement, neurological deficits, and seizures may develop. Rocky Mountain Spotted Tick Fever is caused by a parasite and early symptoms include headache, myalgia, and a characteristic rash usually begins on the wrists or ankles. Tularemia is caused by a bacterium with symptoms such as headache, severe chills, fever, and vomiting. Physicians known for treating Lyme patients are finding co-infections common, especially of the parasitic pathogens Babesia and Ehrlichia.

UNACKNOWLEDGED EPIDEMIC

Ticks are transported throughout the country by deer, mice and other small mammals, migratory birds, and by our own pets. The number of Lyme disease cases reported to the Center of Disease Control is far lower than that of surrounding states. Kathy Cuddeback, President of the Iowa Lyme Disease Association, claims "The Department of Public Health records do not represent the true incidence of Lyme disease in Iowa. In fact, the Iowa criteria for recording a case of Lyme are very restrictive and leave out many diagnosed cases. This leads many healthcare professionals to believe Lyme is not a serious health threat. Consequently, Lyme disease is under-reported, under-diagnosed and under-treated in Iowa."

Ms. Cuddeback also claims diagnosing Lyme can be difficult. "This disease should be diagnosed based on clinical symptoms, as no currently available test is definitive in ruling in or out infection with these pathogens, or whether these infections are responsible for the patientís symptoms." The bullís eye rash, which was thought of as a common diagnostic tool, occurs in about 1/3 of the cases. A non-uniform rash or even multiple rashes may be present.

A MASTER OF ELUSIVENESS

Researchers disagree on how long it takes the infected tick to transfer the bacteria, from as little as 4 hours to as long as 72 hours. Once inside, this bacterium can disseminate throughout the body remarkably rapidly. In its spirochetal form, it can travel through blood vessel walls and through connective tissue. Animal studies have shown that in less than a week after being infected, the Lyme spirochete can be deeply embedded inside tendons, muscles, the heart and the brain. It invades tissue, replicates and destroys its host cell as it emerges. It also changes form from a cell wall state to an "L-shape" to a cyst stage, confusing the immune system and becoming invulnerable to standard antibiotic treatment.

THE GREAT IMPOSTER

Lyme can manifest such a broad range of symptoms that it is often misdiagnosed as other diseases. Knowledgeable Lyme physicians report many patients, clinically diagnosed with Lyme, were first labeled with conditions such as fibromyalgia, ALS, chronic fatigue syndrome or Multiple Sclerosis.

The years ahead will unravel some of the challenges of this disease. Until then medical professionals should consider Lyme a serious threat to the health of Iowans and even to the unborn, for it can be passed congenitally from mother to child, causing miscarriages, stillbirth and birth defects. Lyme disease can cause long term disability and can even be fatal.

SIGNS AND SYMPTOMS 

Early signs and symptoms may occur from 48 hrs. to several weeks after a tick bite. It is very important to save the tick for possible testing, in a plastic vial or bag, in the refrigerator, with a blade of grass.

* Flu-like symptoms - fatigue, muscle and joint pain, headache, fever, chills, swollen glands, sore throat, stiff neck.
* A rash which may have a variety of appearances including multiple rashes or the bulls-eye rash. 

Later Signs and Symptoms

Note: These may occur weeks, months, and even years after the bite:

* Continual flu-like symptoms with swollen glands, low grade fevers.
* Muscle pain, weakness, numbness, tingling, motor dysfunction and paralysis.
* Stiff neck, severe headaches, loss of balance, dizziness, poor coordination, Bellís palsy.
* Blurred vision, loss of sight, sensitivity to light, sounds, motion, and odors.
* Irregular heartbeat, palpitations, heart block, chest pain, difficulty breathing.
* Cognitive dysfunction, difficulty organizing or making decisions, memory loss.
* Tremors, seizures, panic attacks, anxiety, sleep disorders, swollen joints.
* Depression, psychiatric disorders.

TICK REMOVAL

* Grasp the head of the tick with tweezers and pull gently. (See physician if unable to remove the whole tick.)
* Wash site of bite with soap and apply antiseptic.
* Save the tick! Ticks can be tested for the bacterium. Save the tick in a tightly closed container with a blade of grass, and refrigerate. Note the date and location of the bite. The Hygienic Laboratory in Iowa City can test ticks.
* Do not prick, burn, or squeeze the tick during removal.
* Do not smother tick with petroleum jelly or fingernail polish.
* Do not use bare fingers to remove or squeeze tick to kill it.
* See your physician if you develop a rash and/or flu-like symptoms such as fever, swollen glands, body aches

PROTECTION

* Wear light colored, long sleeves and pants. Tuck pants into socks or put tape around the cuffs.
* Apply an insect repellent containing DEET to clothing. Follow manufacturerís label.
* If a lot of time will be spent in tick habitat a much stronger repellent containing Permethrin can be used on clothing and will last weeks. Apply to clothing outdoors, wear protective gloves, mask and follow directions on the label.
* Stay on trails, avoid contact with vegetation.
* Check frequently for ticks while outdoors.
* After an outing, examine your clothing and place in a hot dryer for 20 min. to kill bacteria possibly harboring in infected ticks. Check your skin thoroughly, especially the scalp area.
* Check your pets and remove ticks. Save for later inspection. Discuss a flea and tick prevention program with your veterinarian. Pets can also get Lyme disease.
* In your yard, remove brush and leaf litter or create a buffer zone of wood chips or gravel between forest and lawn or recreational area. Instruct children to stay away from brushy edges of your yard. 

With the mild winter ticks should be thriving again this year. Donít be afraid to enjoy outdoor recreational pursuits, but be aware of ticks and that Lyme disease is out there.

SUPPORT AND INFORMATION

The Iowa Lyme Disease Association is a non-profit organization, created in 1999 by chronic Lyme disease patients and their families. The ILDA mission is to educate and provide a communication network and support for Iowans affected by this disease. Contact the ILDA for more information on Lyme prevention and symptoms, local support groups, and for a list of speakers that are available to educate groups and organizations about this disease.

The ILDA is selling Tick Removal Kits as a fund raiser. Cost is $5 each and includes a special tool for easy tick removal, tick I.D. card, Lyme disease facts, antiseptic wipes, and plastic bag for storing tick. Orders may be sent to the address below.


Iowa Lyme Disease Association
P.O. Box 221, Brighton, IA 52540
www.ildf.info/home e-mail: iowalymedisease@yahoo.net