NORMAL -- Three years ago, Ann Spence was an energetic junior high school teacher, coach and runner whose goals included hiking in each of the 50 states.
Now, Spence, 43, has lost 22 pounds, has been on medical leave since February, has given up her coaching duties, can't go to church, seldom goes out and can't walk further than around the block.
The culprit is a tiny tick that bit her when she was hiking in Southern Illinois.
Spence has Lyme disease, a debilitating and underreported disease that -- if untreated, undertreated or mistreated -- can cause permanent nerve, musculoskeletal and cardiac damage.
Because Lyme symptoms are so varied, the disease often is misdiagnosed, said three McLean County Lyme patients. So there's no way to know how many people actually have the disease, they said.
But Spence of Normal, Bill Sellberg Jr. of Normal, and Marilea White of LeRoy are fighting back. Their weapons are their stories and information they hope will prevent others from being bitten this summer and beyond, and will help people to know how to respond if they are bitten.
"Like it or lump it, people need to know that there is Lyme disease in Central Illinois," White said.
Ann Spence
Spence, a science teacher in Unit 5's Chiddix Junior High School for 22 years, was scheduled to attend a reptile and amphibian conference for school teachers in Southern Illinois in April 2003. She decided to arrive a day early to hike in the Cache River Natural Area, a Cypress swamp.
Spence was more worried about water moccasins than ticks. But she had on insect repellent, jeans rather than shorts, a T-shirt and hat. She thought she was protected.
"It probably got under my cap and bit me on the head because I never saw anything and didn't feel anything," she said in her Normal home recently.
Two weeks later, she had a high fever, an ear infection and felt achy. Her doctor put her on antibiotics.
One day, she was doing sit-ups at home when everything began to spin. She was diagnosed with vertigo and was treated for that but still had ear pressure and felt off balance.
A friend suggested Lyme disease but she began to feel better and resumed a daily walk. In January 2004, she fell down several times at work and had tingling down her left arm and leg. About that same time, she began experiencing myoclonus, a sudden spasm of muscles, several times a day. The spasms leave her fatigued. In August 2004, she had a blood test that resulted in a diagnosis of Lyme disease.
The Pantagraph/STEVE SMEDLEY Spence sits in front of a Rife machine to illustrate a treatment she has used for 30 minutes once a week to kill bacteria using electromagnetic frequencies.
"I actually was, like, 'Yes, we have a diagnosis, finally!'" she recalled.
She was put on antibiotics and found a Lyme specialist, Dr. Susan Busse, in Hoffman Estates, a Chicago suburb, who confirmed the diagnosis and put Spence on an intravenous antibiotic. On her own, Spence also purchased a Rife machine, which she runs once a week for 30 minutes and which supposedly kills bacteria using electromagnetic frequencies.
She felt better for awhile. But by February 2006, she was so fatigued and was having so many episodes of myoclonus that she needed to take medical leave from work. Other symptoms include pain in her left foot, imbalance and occasional ringing in her ears.
"I can mow the lawn or run errands or clean house, but then I'm wiped out for the entire day. Before, I could do all of those things in a day."
She can't go to a restaurant, a ballgame, even church because the noise sets off her myoclonus. Instead, she may go out with a friend to a bookstore and does Bible study on her own at a quiet coffee shop. When she goes out, the former runner has to use a walking stick to steady her gait.
Spence takes antibiotics, anti-myoclonus medicine, vitamins and minerals. "I probably take 16 different types of medicines," she said.
Because Busse has closed her practice, Spence will go to a Lyme specialist in Springfield, Mo., on Friday and he will determine whether she can return to work.
"I don't like being off work. I want to get better. I want to teach."
Lyme disease facts * Lyme disease is an infectious disease caused by microscopic bacteria carried by tiny ticks.
* Lyme reports have increased dramatically since the disease was recognized in Lyme, Conn., in 1975.
* Several species of deer ticks --which feed on a variety of mammals and birds -- may become infected with the bacterium, then pass it along to humans and other mammals when the ticks bite them as they pass through woodlands and brushy areas. While deer ticks are responsible for transmitting Lyme disease in the Midwest and northeastern United States, the western black-legged tick carries the disease in the West and the black-legged tick carries the disease in the southeast.
* Ticks, about the size of poppy seeds, may attach to any part of the body but often attach to hidden, hairy areas such as the groin, armpit and scalp. They infect the blood stream.
* Reduce your risk of tick bites when hiking by wearing light-colored clothing, tucking pant legs into socks or boots, wearing a hat and long-sleeve shirt, spraying insect repellent containing DEET on clothes and exposed skin and staying on trails.
* After hikes, remove clothing and wash and dry them at a high temperature. Check your body, your partner's body and your pet for ticks.
* If you find a tick, remove it with tweezers by grasping the tick as close to the skin as possible and pulling it straight back. Save the tick in a sealed container and submit it to your local health department for testing. Wash your hands with soapy water and apply antiseptic to the bite site.
* Early symptoms of Lyme include fatigue, fever, headache, and muscle and joint pain. In about half of Lyme cases, a "bulls-eye" skin rash appears.
* Lyme disease is difficult to diagnose because symptoms may be mistaken for viral infections and joint pain may be mistaken for arthritis or multiple sclerosis. A blood test, the Western Blot test, may determine whether a person has Lyme.
* Lyme disease is treated with antibiotics under physician supervision. The earlier a patient is treated, the sooner and more completely a patient may recover.
* Patients who aren't treated quickly or adequately may experience long-term symptoms, including joint pain, nervous system abnormalities, sleep disturbance, problems with memory and concentration, muscle twitching and heart rhythm irregularities. Lyme can be fatal.
Bill Sellberg Jr.
Sellberg, 49, is a Bloomington-Normal native who has been a State Farm Insurance Cos. technical analyst for 21 years. He and his wife, Joan, have been active in the Illinois Paint Horse Association for years.
They returned from a horse show in west central Indiana in August 2003 when Sellberg found a tick attached to his lower abdomen on the left side.
"I've fished and hunted and like to be outdoors and knew it was a tick," he said.
He went to an emergency room to have the tick removed, but the tick's head was left in Sellberg's abdomen and had to be cut out. The tick wasn't sent off to be tested and Sellberg wasn't put on an antibiotic.
Three weeks later, he had joint pain in his knees and was put on an antibiotic. Through December 2003, he was on and off antibiotics and had on-again, off-again joint pain. In spring 2004, he had severe pain in the big toe of his right foot and was treated for gout.
In July, he had severe pain all over and couldn't sleep through the night. Whenever he mentioned the tick bite to doctors, they said he didn't have Lyme disease. However, a blood test that September indicted he had Lyme.
As did Spence, Sellberg went to Busse that October and she confirmed that he had Lyme. She started him on an oral antibiotic, then he began take antibiotics intravenously in November 2004.
"I'm on my fifth PICC (peripherally inserted central catheter)," he said of the tube extending out of his left arm, through which he receives his medicine twice a day. He also takes oral antibiotics and other pills and gets weekly blood draws to monitor his kidney and liver function.
"My recovery has been slow."
By November 2005, he was able to return to work full time.
"I still have joint pain in the neck, hands, knees and feet." He also experiences forgetfulness and has trouble with word retrieval.
"It is very frustrating," he said. "I go into work and try to do the best job I can do. My management has been very supportive to help me work through this.
"My good days are like most peoples' bad days. But I've tried to remain upbeat.
"This is a very debilitating disease. At first, I thought I could return to normal life. Now I don't know if that's possible."
Marilea White
White, 64, a retired school social worker with Tri-County Special Education, has a long history with Lyme.
In October 1985, she experienced an itch and pain that started on her back before the pain spread around her body, then settled in her hands and thumbs. After a week and a half, the pain went away and White attributed it to a weird virus.
In summer 2003, she developed severe lung problems and was diagnosed with hypersensitivity pneumonitis. She was put on prednisone, then taken off it until she began to experience exhaustion and leg pain in January 2004. She remained on prednisone until April 2005.
Her lungs were better but the earlier pain in her thumbs, back, knees and feet returned. She also experienced burning on the bottom of her feet and problems with memory, word retrieval and balance. Her chiropractor referred her to Busse, who confirmed she had the illness.
White said she had been in Vermont, Wisconsin and Michigan in the mid-'80s and often camped, but she isn't sure where and when she got the tick bite.
White is on her sixth antibiotic, takes vitamins and minerals, gets a massage every week, watches her diet and tries to exercise and remain upbeat and active. Her feet no longer burn and she feels the best she's felt since 2003. But her problems with word retrieval, short-term memory and fatigue remain.
"I was a high-energy person ... but now I sleep eight to 10 hours a night and take naps," White said.
Just thought people might want to read this article that shows Lyme is everywhere. Sorry I couldn't get the pictures in, but you didn't want to see my ugly mug anyway.
Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
up
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
| IP: Logged |
Did you go to the newspaper asking for the article or did they come to you.
Very informative and accurate. I've just met two more people in my area with Lyme and I'm thinking its time to get an article in the paper here.
Posts: 460 | From Illinois | Registered: Aug 2005
| IP: Logged |
posted
Great article...but I'm so sorry you had to be a part of that, Ann. Thank goodness the author got the facts right. Hats off to the three of you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
chroniccosmic: I went to the paper and ask for an article on Lyme. Wish they had put in some other things I suggested:
if a doctor says you don't have lyme purse it with someone else
take a picture if you get a rash
Support group etc.
size of nymph tick--I gave them a picture
oh well, at least it got some people thinking about it.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Bravo, Ann! You did it just right and that is a great article. I went to the website and saw that the sidebar was good too! ( a little confusion about ticks, but not much)
Lyme disease facts * Lyme disease is an infectious disease caused by microscopic bacteria carried by tiny ticks.
* Lyme reports have increased dramatically since the disease was recognized in Lyme, Conn., in 1975.
* Several species of deer ticks --which feed on a variety of mammals and birds -- may become infected with the bacterium, then pass it along to humans and other mammals when the ticks bite them as they pass through woodlands and brushy areas. While deer ticks are responsible for transmitting Lyme disease in the Midwest and northeastern United States, the western black-legged tick carries the disease in the West and the black-legged tick carries the disease in the southeast.
* Ticks, about the size of poppy seeds, may attach to any part of the body but often attach to hidden, hairy areas such as the groin, armpit and scalp. They infect the blood stream.
* Reduce your risk of tick bites when hiking by wearing light-colored clothing, tucking pant legs into socks or boots, wearing a hat and long-sleeve shirt, spraying insect repellent containing DEET on clothes and exposed skin and staying on trails.
* After hikes, remove clothing and wash and dry them at a high temperature. Check your body, your partner's body and your pet for ticks.
* If you find a tick, remove it with tweezers by grasping the tick as close to the skin as possible and pulling it straight back. Save the tick in a sealed container and submit it to your local health department for testing. Wash your hands with soapy water and apply antiseptic to the bite site.
* Early symptoms of Lyme include fatigue, fever, headache, and muscle and joint pain. In about half of Lyme cases, a "bulls-eye" skin rash appears.
* Lyme disease is difficult to diagnose because symptoms may be mistaken for viral infections and joint pain may be mistaken for arthritis or multiple sclerosis. A blood test, the Western Blot test, may determine whether a person has Lyme.
* Lyme disease is treated with antibiotics under physician supervision. The earlier a patient is treated, the sooner and more completely a patient may recover.
* Patients who aren't treated quickly or adequately may experience long-term symptoms, including joint pain, nervous system abnormalities, sleep disturbance, problems with memory and concentration, muscle twitching and heart rhythm irregularities. Lyme can be fatal. [end quote]
Thank you so much! Just think how many people are now aware and forewarned about Tick Borne diseases!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic