Putting the bite on Lyme disease New Scotland woman who suffered through long bout with tick-borne illness forms support group
By CATHLEEN F. CROWLEY, Staff writer First published: Thursday, July 5, 2007
NEW SCOTLAND -- Judy Merritt, a retired speech pathologist, slept 12 hours a night and spent her days collapsed on the sofa of her New Scotland home. Dizziness, headaches, nausea, vertigo and double vision plagued her. When she exerted herself, she felt like she her head would explode.
Merritt, 65, visited all types of doctors and went through blood tests, CT scans and MRI and lumbar punch. They couldn't find anything to explain her symptoms.
Finally, a specialist diagnosed her with Lyme disease, a tick-borne infection.
A year later, she is feeling better and on a mission. With the support of the Empire State Lyme Disease Association, Merritt is forming a support group to help Capital Region residents with Lyme disease navigate its confounding symptoms, learn to cope and educate the public.
"I really don't want people to go through the horror that I did," Merritt said.
In New York, 5,000 cases of Lyme disease were reported last year, and 72,000 cases have been reported statewide since 1986.
It is caused by a bacterial agent carried and spread by ticks. Inside the body, the bacteria can entrench itself in tissue and cause havoc. The spectrum of symptoms ranges from a rash and muscle and joint pain to heart disease and neurological problems. It can baffle doctors and has been been misdiagnosed as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders.
Lyme disease has been successfully treated with antibiotics, although it sometimes evolves into a chronic condition. On rare occasions, it is fatal.
"Lyme disease has so many symptoms that the diagnosis is very confusing," Merritt said. "People are just in a total fog up here about Lyme disease. Nobody understands what it is, how you get it and how you prevent it."
New York already has 17 support groups for Lyme disease.
"We embrace each other. We understand what each person is going through," said Eva Haughie, president of the Empire State Lyme Disease Association and a Lyme disease sufferer.
"We help with relating our own experiences so it's not as frightening to someone newly diagnosed," Haughie said about support groups. "There are some people who consider suicide because of the symptoms they are dealing with on a daily basis."
Haughie said even some members of her own family don't understand what she is going through.
"They are like, 'Why aren't you better?' " she said.
Research is needed, said Merritt and Haughie.
They have someone on their side: U.S. Sen. Charles Schumer, D-N.Y. Schumer had a brush with Lyme disease in May. A tick crawled onto his leg at some time during a tour of dams in Putnam, Dutchess and Orange counties. He developed the tell-tale bull's-eye rash of Lyme disease and after consulting a doctor familiar with Lyme, he was given a 21-day course of antibiotics.
"He's feeling good and healthy," said Alex Detrick, Schumer's spokesman. Schumer has renewed his efforts to get more funding for research in Lyme disease.
Merritt's health has improved, but she still hasn't returned to playing tennis and is afraid to go into her garden and yard, where she probably picked up the tick in June 2006.
"It has affected my life significantly," she said. "I can't have what is a normal day for me." F. Crowley can be reached at 454-5348, or by e-mail at ccrowley@timesunion.com.
Getting helpWhat: Lyme disease support meeting Who: Empire State Lyme Disease Association Why: Education, action and support When: 1 to 3 p.m. Saturday, July 14 Where: Bethlehem Public Library
I have a friend of a friend who is experiencing these exact same symptoms. She is in her mid 20's and it so effected she no longer can work. I contacted her to forward this information to the family. Let's pray for her that somehow an answer to her dilema is found.
Cel, my sister in law who lives in NJ had contracted Lymes quite a few years ago. She had these symptoms for years before they figured out what it was. She was practically bed ridden and at one point they thought she would be in a wheel chair. She also had the double vision. She ended up taking IV antibotics at home for months. She is fine now, but the only thing left as a reminder of the Lymes, is that she does have a very slight defect in her heart now. Nothing life threatening.
So this really is serious if untreated. If I were your friend, I would insist the doctors treat her for Lymes anyways. There is a blood test, but it is not conclusive. So I would take the antibiotic theropy as soon as possible no matter what the blood test results are.
The test that they use to check for lyme disease seems to give too many false negatives and the disease goes undiagnosed until the symptoms get unbearable. It happened to my wife when she was bit by a tick and had similar symptoms for a few years until they treated the disease.
That is exactly what happened to my sister in law. The blood tests came back negative, but when they finally started to treat her, she got much better.
We have pulled 4 ticks out of our dog so far this summer. She did have the lymes vaccine, so she should be ok. And of course not all ticks carry lymes anyways so there may not even be a threat of the dog or anyone else contracting it.
CAPITAL REGION Lyme disease tally rises sharply in area BY SARA FOSS Gazette Reporter
In 2002, there were just 15 cases of Lyme disease in Saratoga County. This year, Saratoga County is seeing more cases of Lyme disease than ever before. Saratoga County has already confirmed 138 new cases of Lyme disease, up from the 115 cases the county reported during the same period in 2007, and the 85 it reported in all of 2006. Other Capital Region counties are also seeing big jumps in Lyme disease. As of Friday, there were 54 confirmed cases of Lyme disease in Schenectady County, a 57 percent jump from the same time period in 2007, when 21 cases were confirmed. In Albany County, 387 cases of Lyme disease were reported through the end of July, a 49 percent increase from the 259 cases reported during the same time period in 2007. Officials said that Lyme disease, once more of a downstate phenomenon, seems to be moving north. “The ticks were once more southern, but they’re moving up this way,” said Terri Stortz, communicable disease coordinator for Saratoga County. “People do not have to travel to get Lyme disease. They’re staying in the county and getting it.” Stortz said the actual number of Lyme disease cases may be higher than the official figures. Doctors are supposed to give patients two different blood tests when confirming a case of Lyme disease; if they only administer one of the tests, the New York State Department of Health won’t include the case in the agency’s offi cial Lyme disease tally. “Not all doctors do both tests,” she said. Stortz and others said that doctors are becoming more aware of the protocol. “We are seeing a lot more testing,” she said. Schenectady County Health Education Coordinator Glynnis Hunt said that doctors are more aware of Lyme disease and the need to test for it. “A lot more physicians and health care providers are doing testing,” she said. “This disease is constantly changing. It’s hard to attribute the increase to just one thing. We’re dealing with it more in our office. There are just more cases of it, and it keeps the teams busier.” Statewide, there’s actually been a decrease in the number of reported cases of Lyme disease. In 2002, there were 5,476 cases of Lyme disease; last year, that num- ber dropped to 4,187. And the state doesn’t really have an explanation for why this drop occurred, according to Claire Pospisil, a spokeswoman for the New York State Department of Health. Several factors may account for the increase in Lyme disease cases locally. “We have been seeing an upward trend in Lyme disease over the past 20 years,” Pospisil said, in an e-mail. “Lyme disease has increased its geographic range in New York state from the greater New York City metropolitan area and Long Island north and west, to where the leading edge of cases is as far north as Washington and Warren counties and as far west as Fulton, Montgomery and Herkimer counties.” Pospisil said it’s difficult to account for this geographic spread, but that changes in the environment are likely contributors. Small climate changes, she said, can impact winter survival of deer ticks, and increases in temperature can allow ticks to expand their range. Other changes, such as fields converting back to forests and land being cleared for homes, can impact tick distributions and densities, and place people in environments where they’re more likely to encounter ticks. Lyme disease is treatable using antibiotics and almost always results in a full cure, according to the New York State Department of Health. If treatment is delayed, chances of a complete cure decrease. Lyme disease is caused by bacteria transmitted by the deer tick. The chances of being bit by a tick increase during the time of year when ticks are most active. Young deer ticks are active from mid-May to mid August; adult ticks are most active from March to mid-May and from mid-August to November. People are more likely to be bit by a deer tick if they spend time in wooded and grassy areas. Deer ticks are tiny — a young deer tick is about the size of a poppy seed, and an adult deer tick is the size of a sesame seed, according to the New York State Department of Health. SYMPTOMS In 60 to 80 percent of Lyme disease cases, a rash resembling a bull’s eye or solid patch will appear and expand around the site of the deer tick bite, although sometimes there are multiple rash sites. During the early stages of Lyme disease, symptoms include chills and fever, headache, fatigue, stiff neck, muscle and/or joint pain and swollen glands. In later stages, if the disease is unrecognized or untreated, severe fatigue, a stiff aching neck, tingling or numbness in the arms and legs or facial paralysis can occur. Untreated, the disease can cause arthritis and neurological problems. Early symptoms usually appear within three to 30 days after a bite from an infected deer tick. When visiting a tick-infested area, people should wear light-colored clothing, which makes it easier to find ticks, and tuck their pants into their socks and their shirts into their pants. They should also check for ticks every day. If an attached tick is removed within 36 hours, the risk of tickborne infection is minimal. To remove a tick, grasp the mouthparts with tweezers as close to the skin as possible, while taking care not to crush or puncture the body of the tick, which may contain infectious fluids. After removing the tick, disinfect the bite site and wash your hands. More than 72,000 cases of Lyme disease have been reported to the New York State Department of Health since Lyme disease became reportable in 1986.
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