Friday, Jun. 08, 2012
Tiny ticks often cause huge trouble
Many in region suffer terribly from Lyme disease
by JOSEPH NORRIS, Staff Writer
Staff photo by EMILY BARNES Carole Koller of Port Republic said she experienced five years of insufferable pain from Lyme disease before she finally found relief.
They’re tiny. Minuscule. Full grown, they’re no bigger than a sesame seed.
But they can cause grief of such proportions that physicians are often left confounded.
They are deer ticks, Ixodes scapularis. They transmit a scourge called Lyme disease, a debilitating affliction that shares symptoms with so many other maladies it’s difficult to diagnose. Tests for the disease often turn up negative for as long as a year before registering positive. There is no vaccine. Antibiotics help, but only if the victim is placed on medications early. Otherwise, it’s a long, painful ride.
Sufferers become familiar with drugs like doxycycline (for adults), amoxicillin (for children), erythromycin (for pregnant women) and ceftriaxone, with treatment lasting 10 to 28 days. In later stages, the bacteria spread throughout the body and might cross the blood-brain barrier, making the infection more difficult to treat. Late-diagnosed Lyme is treated with oral or intravenous antibiotics, frequently ceftriaxone for a minimum of four weeks. Minocycline also is used for its ability to cross the blood-brain barrier.
Left untreated, Lyme disease can cause chronic joint inflammation (Lyme arthritis), particularly of the knee; neurological symptoms, such as facial palsy and neuropathy; cognitive defects, such as impaired memory; and heart rhythm irregularities. Other symptoms include chronic fatigue and severe headaches.
Borrelia bacteria belong to a phylum of bacteria called spirochetes that have flagella tiny filaments that enable them to move around, according to information on the University of California, Berkeley website. These tick-spawned microbes invade healthy cells and organs and can transform into two alternative structures inside the body. It’s little wonder treatment is as frustrating for physicians as for the patients.
To contract Lyme disease, the victim must be bitten by an infected deer tick. The bacteria enter the skin through the bite and eventually make their way into the bloodstream. Before bacteria can be transmitted, a deer tick must take a blood meal, which can take more than 48 hours of feeding. Only ticks that are attached and feeding can transmit the bacteria. An attached tick that has a swollen appearance may indicate that enough time has elapsed to transmit bacteria. Removing the tick as soon as possible might prevent infection.
While deer ticks are the primary carriers of the disease, many disagree on an assertion that all ticks might carry some form of Lyme.
Bull’s-eyeThe Centers for Disease Control and Prevention in Atlanta features photos on its website of the dreaded “bull’s-eye,” which forms around a tick bite. Yet, in myriad cases, victims report they never see the red circle around the bite.
“I never got a rash,” said Carole Koller of Port Republic, who had her run-in with the disease five years ago. Koller has only found freedom from her symptoms in the past few months. She and her husband, Doug Poole, just had moved to Calvert when she contracted the disease. She has horses and was clearing brush along a fence line.
“I’d heard about Lyme, but I didn’t take it seriously,” Koller said. “I had lots of ticks. I was always pulling ticks off and there were a couple of them I didn’t get. They were tiny little things. I got an itchy red spot that didn’t go away.”
Within two months, Koller was experiencing chronic fatigue and joint pain.
“I attributed it to how hard we were working,” she said. “At the time, we were going seven days a week.”
She then started getting headaches that lasted “all day, every day.” Koller went to a doctor, who prescribed antibiotics.
“I’m sorry now I wasn’t more proactive,” she said. “The doctor didn’t think it was that big of a deal. He told me my chances of getting Lyme disease were one in a thousand.”
Koller persisted in telling the doctor she needed to be tested, and, as in many cases, the test came back negative. By August of the first year, the headaches had gone away, but she began experiencing numbness in her hands.
“I thought I was losing my mind,” she said. “I started thinking, ‘Maybe this is what happens to people in their 40s who have Alzheimer’s in their 80s.’”
Koller was tested for everything from multiple sclerosis to lupus to fibromyalgia.
“By then I’d been tested again and the doctor said, ‘I’m so sorry. You have Lyme,’” she recalled. “I told him, ‘I’m just glad you found out what it was.’”
Her physician initially prescribed doxycycline for three weeks. She took it for five months.
“I had gotten to that point where pain was just shooting out of my extremities,” Koller said. “I’d had six or seven different blood tests. I took antibiotics for three weeks. They weren’t doing any good. I had pain under my fingernails, pain in my fingers, shooting pain all day long in different places. As a follow-up, I went to see Dr. [Paul V.] Pomilla at Calvert Internal Medicine Group. He put me on doxy for 60 days. Everything would initially work, but then the symptoms would come back. It wasn’t going away.”
Doctors put a PICC line port in her arm and she began receiving antibiotics through an IV every day, followed by blood tests every week. Doctors had her start chronicling where the pain was in her system every day.
“It would change every day,” she said. “After a while it all runs together. You get so used to being in pain.”
Finally, after 14 months and a plethora of treatments, she got to where she was “pretty good.” But after eight or nine months, the symptoms all came back.
“But never like that first summer,” she noted.
Koller said her medications cost as much as $1,800 a month. While her insurance paid for much of it, costs associated with her treatment spiraled.
“I don’t know how people who don’t have insurance would ever be able to afford it,” she said.
Koller said infectious disease doctors in the region are overwhelmed by the volume of Lyme cases they are facing.
“One doctor I know of in St. Mary’s is full up,” she said. “They can’t take any more patients.”
The top 10 you don’t want to be in
Maryland ranks fourth in the top 10 states for number of Lyme cases per 100,000 residents, according to information from the Centers for Disease Control for 2010.
More than 95 percent of Lyme cases come from three distinct geographic regions of the United States, including the northeastern U.S. from Maryland to Maine, parts of the upper Midwest in Wisconsin and Minnesota, and parts of northern California and southern Oregon.
Since national statistics were first taken in 1982, the number of cases reported annually has risen twenty-five-fold, and the cumulative number of reported cases now exceeds 128,000. In 1998, 16,801 cases were reported, with approximately 27 percent of cases from New York, 20 percent from Connecticut, 17 percent from Pennsylvania, 11 percent from New Jersey, 5 percent from Rhode Island, and 4 percent each from Maryland, Massachusetts and Wisconsin.
The highest incidence rates in 1998 were found in Connecticut (105 per 100,000), followed by Rhode Island (79.6), New York (25.5), New Jersey (24.0), Pennsylvania (22.9), Maryland (13.1) and Wisconsin (12.8).
More than 2,200 cases of Lyme disease were reported in Maryland in 2007, almost double the number in 2006 and a record for the state. The sharpest increases in recent years occurred in Anne Arundel, Baltimore, Carroll and Montgomery counties, but Lyme remains the top tick-borne disease in Southern Maryland. In 2008, Maryland changed its definition for Lyme disease to confirmed and probable cases.
This shifted the numbers somewhat.
Where Calvert County, for instance, registered in the top 10 counties in the state prior to 2008, its designation fell to 17th and eventually 15th place overall in the state. Charles County cases rose from 44 in 2007 to 67 cases in 2008, then spiked to 82 cases in 2009, but dropped to 33 in 2010. St. Mary’s County had 21 cases in 2008 but jumped to 67 the following year. In 2010, it registered 30 cases.
“Lyme is still a public health concern in Southern Maryland. I would say we need to be vigilant. People want to be careful and concerned,” said Sharon Nazarek, assistant director of nursing for the Calvert County Health Department.
A group formed two years ago in Southern Maryland as a networking avenue for victims of the disease. Lyme Awareness Network member and Calvert County resident Connie Sutton said they haven’t had many meetings in the past year because so many members are suffering with the debilitating effects of the disease.
“The Lyme Awareness Network is an offshoot of [a] Lyme support group that meets at Calvert Memorial Hospital,” Sutton said. “We wanted to be more active in the community, so we put a grassroots group together and would host Lyme awareness events throughout Southern Maryland. Most of us in that group have Lyme. We did pull off a few showings of the movie, ‘Under Our Skin,’ which is a Lyme documentary. We haven’t been active in the past year. A lot of people have the disease and it’s just so hard for everyone to get together and be healthy.”
Round and around“I ended up having it for five years before I even knew what it was,” said Karen Bowling of Newburg. “I went to see the doctor in 2007 for what I thought was a knee injury. The doctor took one look at me and said, ‘You have Lyme disease.’ I didn’t even know what it was. I hadn’t heard of it back then.The test she gave me was the Western blot test. It came back positive.
“I had been bitten by this tick in 2002. ... The reason I know is because I had just started working at the courthouse in St. Mary’s County. I thought it was a spider bite. It was a big, round red circle with a bite in the middle. I never saw a spider, never saw a tick. I actually went to a doctor about something else and I remember him asking me what it was on the back of my arm. I just said, ‘Oh, a spider bit me.’ By then it was almost healed. Ever since then I’ve been back and forth to the doctors. The biggest problem is finding doctors who believe in it.”
Bowling realized that if the doctors couldn’t help with the disease, she had to get help for her pain.
“I started going to pain management,” she said. “They were able to control it. I was on morphine two times a day every day. For two years I wasn’t coherent. I’m on antidepressants now, I believe, from all this crap I’ve been through. What really started it all was pain in my shoulder blade area and under my shoulder. That’s still hurting me to this day. They’ve yet to find out what that is.”
Bowling said she lost her job due to the disease. She has been denied disability by Social Security because they say there’s not enough information.
“The strange thing is, Lyme disease is in this neighborhood,” Bowling said. “I have a German shepherd, he has it also. The thing of it is, they have a vaccine for a dog. They don’t have one for humans.”
‘What chance do we have?’
Kat Cecil of Callaway knows the effects of Lyme disease all too well. Arthritis, headaches, fatigue all came to her about five years ago.
“I think I might have had it for a while before I even realized I’d been bitten by a tick,” Cecil said. “I thought I was getting early arthritis and a bunch of other things about five years ago. I had headaches forever. They would last for days. They were so debilitating I would be in bed for days at a time. I rubbed my head so hard my temples were bruised. That’s how bad they were. I was so tired, I would get up in the morning and I’d be more exhausted than I was when I went to bed. I finally went to my doctor and asked her if she could test me for Lyme. She said, ‘I don’t think you have Lyme,’ and I told her I wanted to be tested anyway. The test came back positive.”
She said she slowly recovered but still has memory loss associated with the disease.
“I’ve slowly gotten rid of the symptoms, everything except the arthritis and the memory loss — that’s the key part of it,” she said. “It’s not like I haven’t been bitten by ticks since. I have horses and a farm. ... And of course, we had ticks all through the winter, because we really didn’t have a winter.”
While Koller had one horse and one of her dogs that contracted Lyme, Cecil has managed to keep her animals free of the disease.
“I give them all their shots every year and check them every day,” she said. “None of my animals showed symptoms of having it.”
She said she put up a fence to keep out deer, which seems to have helped.
She said her cousin, who is a lawyer in Anne Arundel County, got a severe case.
“At one point they were giving him last rites,” she said. “If he, a lawyer, a man who hardly ever goes out in the wild, can get it and get that bad off with it, what chance do the rest of us have?”
Prevention is the best medicine
The Maryland Department of Health and Mental Hygiene recommends the following precautions:
-Wear long pants and long sleeves to help keep ticks off skin.
-Wear light-colored clothing to spot ticks more easily.
-When planning to be in an environment where ticks are often found, use repellent that contains at least 20 percent Diethyl-meta-toluamide DEET on exposed skin for protection that lasts several hours. Parents should apply repellent to children; the American Academy of Pediatrics recommends products with up to 30 percent DEET for kids. Always follow product instructions.
-Treat clothing and gear, such as boots, pants, socks and tents, with the pesticide permethrin, or look for clothing pretreated with permethrin.
-Avoid areas with high grass and leaf litter, and walk in the center of trails when hiking.
-Bathe or shower as soon as possible after coming indoors to wash off and more easily find crawling ticks before they bite.
-Conduct a full-body tick check using a hand-held or full-length mirror to view all parts of the body upon returning from tick-infested areas. Parents should help children check thoroughly for ticks. Remove any ticks right away.
-Remove an attached tick with tweezers by grasping it as close to the skin as possible and pulling firmly and gently straight up and washing the area well with soap and water; and
-Talk to a veterinarian about tick-control products for pets.
Alternative formulas to fight Lyme disease:
-Synergy Formulas, 251 W. Road, Campobello, SC 29322 sells a formula called Lymesode for temporary relief associated with exposure to Lyme. Go to www.synergyformulas.com.
-Teasel root has proven beneficial for people with chronic Lyme disease. Testimonials and product information can be found at www.ladybarbara.net.
-Phyllis A. and James F. Balch’s book, “Prescription for Nutritional Healing” recommends alfalfa, dandelion root, ginseng, hawthorn, horsetail, milk thistle and red clover along with garlic, kelp, Vitamin A with mixed carotenoids, Vitamin C with bioflavonoids, Vitamin E and zinc lozenges.
Websites with more info: