One street, 3 cases of Lyme disease
Boston Globe
Region seen at high risk for tick-borne infection
By Carolyn Y. Johnson, Globe Staff | July 31, 2005
On a wooded, U-shaped street in Norwell, three neighbors have something new in common this summer: Lyme disease.
The three cases -- two boys and a 63-year-old man -- on Hemlock Drive are a timely reminder that residents in many area communities are at high risk for the tick-borne infection.
The disease usually spreads when tiny deer-tick larvae pick up the bacteria from an infected field mouse, and go on to bite humans during the summer months. Cases were once concentrated on Cape Cod, Nantucket, and Martha's Vineyard, which still boast the highest rates of infection in Massachusetts, but Plymouth County now has the fifth-highest incidence of cases in the state, and regularly racks up more than four times the national average.
Across the region last year, there were 170 cases in Plymouth County, 136 cases in Norfolk County, and 114 cases in Bristol County. The combined average of 26 cases per 100,000 people is about three times the latest available national average of 8.2 cases per 100,000 people in 2002.
''We've seen over the years an increasing number of cases . . . wherever there are deer, deer mites, and ticks," said Dr. Alfred DeMaria, head of communicable disease control for the state Department of Public Health. ''Which is pretty much everywhere, now."
The cases on Hemlock Drive exemplify the difficulty of catching and correctly diagnosing the disease, which is known as an ''imitator" because its symptoms often look like flu, arthritis, or even normal aging. If untreated, the disease can cause meningitis, chronic arthritis, or neurological problems.
Bud Sadler, 63, was lucky. He noticed a tick swollen to about half the size of a BB on his waist after mowing the lawn on a steamy day in mid-June. He later noticed a rash, and began to experience severe headaches and flu-like symptoms. His doctor put him on antibiotics, suspecting Lyme, and last week, he took his final dose.
Days earlier, Sadler's 11-year-old neighbor, Sean O'Sullivan, finished up his own antibiotics, which had to be given intravenously. O'Sullivan, too, had flu-like symptoms and aching joints in early June, but no one suspected a serious disease until, during a vacation in New Hampshire, his face became partially paralyzed with Bell's palsy.
Angela Kotlinski never saw the tick. She began to notice red circles, about the size of a half-dollar, on her 7-year-old son William's body in early June, but her doctor assured her everything was fine. When William got a sore throat and aches and was covered from head to toe with 15 red spots, she pushed a doubting nurse to get a blood test. It confirmed he had the disease.
DeMaria said the three cases on a single street -- which add to two other cases reported to the Norwell Board of Health -- aren't an ominous sign of an epidemic, but a reminder that everyone should exercise caution when they go outdoors, and stay alert for symptoms of the disease if they find a tick on their body.
Over the past two years, the number of cases reported in the state has dropped slightly, from a peak of 1,789 in 2002 to 1,437 cases last year. But DeMaria said the slight shift in numbers doesn't mean that the disease is on the decline.
Scientific studies have found that for every diagnosed case of the disease, anywhere from seven to 12 cases slip under the radar.
Saturday, July 30, 2005
Hide and seek
Record Eagle - Traverse City MIJanice Ensfield and Michael Survilla started their crusade to educate people about Lyme disease in an unlikely place.
The friends met in a local chronic fatigue syndrome support group after struggling for years to pinpoint the cause of their life-altering symptoms. Both of them have since been diagnosed with Lyme disease, whose wide-ranging signals often masquerade as other conditions like chronic fatigue.
"At some point in time we've probably been diagnosed with just about everything," said Survilla, who estimates he saw at least 25 medical specialists before testing positive for Lyme.
Infected deer ticks transmit Lyme disease, which can affect every organ and aspect of everyday life. Early stage signs include flu-like illness, extreme fatigue and joint aches, and later stages can spur neurological problems. Common misdiagnoses include fibromyalgia, multiple sclerosis and a host of psychiatric disorders.
Ensfield and Survilla hope telling their stories will help other people who are unknowingly living with Lyme.
Ensfield first became seriously ill in 1990, but looking back she believes she contracted Lyme disease in 1987 when a deer tick bit her in her yard. A second tick bite in 2001, also at her home in Traverse City, transmitted a co-infection.
Even when her debilitating symptoms brought her "near death" in November 2001, Ensfield had still not heard of Lyme disease. Her turning point came in 2002 when her husband was at the doctor's office and encountered a Lyme patient, who recounted similar symptoms.
"I got tested the very next day," Ensfield said.
Survilla doesn't know where and when the infected tick bit him, but he knew something was wrong the day in 1989 when sudden exhaustion and shakes forced him to pause his round of golf.
"From then on it was never the same," he remembered.
Survilla, who lived in Kalamazoo when his illness emerged, was just recently diagnosed with Lyme but like Ensfield had gone years without hearing about the disease. Both take antibiotics - the typical treatment - and see a Saginaw doctor who specializes in Lyme.
Linda Lobes, president of the Michigan Lyme Disease Association, said diligent awareness is the best defense. That means knowing how to detect and properly remove ticks no larger than the period at the end of this sentence and looking out for symptoms, which include but are not limited to the distinctive "bull's-eye" rash.
"The only way to remove a tick is with tweezers, getting as close to the skin as possible," Lobes said, noting that using a lit match or other methods can agitate the tick and exacerbate the problem.
Not all ticks are infected with Lyme disease, but experts recommend erring on the side of caution. Other preventative measures include wearing light-colored clothing so ticks are easier to see, covering skin with long sleeves and pants, wearing closed-toe shoes and applying insect repellents such as DEET.
The Grand Traverse County Health Department logged no local reports of Lyme disease this year or in 2004, said medical director Michael Collins. Lyme is among the conditions doctors are required by state law to report, but Lobes said varying criteria for tracking Lyme cases make reliable statistics hard to find.
Ensfield and Survilla hope heightened awareness means doctors will look for the disease in patients and patients will be more proactive in recognizing potential symptoms.
"It should be one of the first things doctors look for if someone has any of the symptoms at all," Ensfield said.
Friday, July 29, 2005
Lyme cases could shoot up this season
Poughkeepsie JournalIndications are this year could be among the worst for incidences of Lyme disease in the region, according to a local ecologist whose research focuses on the ecology of ticks and the diseases they carry.
Rick Ostfeld, of the Institute of Ecosystem Studies in Millbrook, said this week at least half his team of 15 field technicians have contracted Lyme disease, or some other tick-borne illness, this year. He said usually only a couple of his workers are stricken each year.
"This is unprecedented," Ostfeld said. "If my field crew is any indication, this is one of the worst Lyme disease years in a long time, if not ever."
Dutchess County Health Commissioner Dr. Michael Caldwell said there are indications more ticks are around this year, increasing the risk humans could contract Lyme. He said his agency is seeing the usual, heavy amount of Lyme disease cases around the county this year.
A boost to federal efforts to prevent and treat Lyme disease could be coming under an updated bill introduced by U.S. Rep. Sue Kelly, R-Katonah, and a New Jersey congressman this week. The bill seeks $100 million over five years for fighting the illness.
High rates of Lyme disease in the mid-Hudson Valley are not unusual. Dutchess County has for years had one of the highest incidence rates in the nation.
Bipartisan support
The proposed federal legislation, sponsored by Kelly and U.S. Rep. Chris Smith, R-N.J., matches a Senate version of the bill introduced Monday with bipartisan sponsorship. Kelly and Smith had each proposed competing versions of Lyme legislation this year.
Symptoms of Lyme disease include a bull's-eye rash, fever, malaise, fatigue, headache, muscle and joint aches. Lyme can be treated with antibiotics, but isn't always easy to diagnose.
More must be done at the federal level to prevent and treat Lyme disease, Kelly said in a written statement.
"Passage of this bill would mark a significant first step toward a coordinated federal effort to better understand and treat Lyme disease," Kelly said.
The bill would:
- Require the development of a diagnostic test to better detect Lyme and other tick-borne disorders.
- Authorize federal funding for increased research into diagnosis and treatments for Lyme disease, as well as increasing community education regarding prevention.
- Create an advisory committee in the U.S. Department of Health and Human Services to help develop and implement improved activities for the prevention and control of the disease.
Jill Auerbach, chairwoman of the Hudson Valley Lyme Disease Association, was encouraged identical bills have been introduced in both houses of Congress.
Advocates were divided
Lyme advocates around the region had been split over the bills introduced by Kelly and Smith. Smith's bill had called for $100 million in funding; Kelly's original proposal called for $50 million.
If approved, the legislation could help shed more light on a still somewhat mysterious illness, Auerbach said.
"This will provide funding and research for that purpose," she said.
Ostfeld, the Millbrook ecologist, has scientific evidence supporting a projected spike in Lyme disease cases this year. It has to do with acorns and mice.
A bumper crop of acorns on forest floors in 2003 helped boost the white-footed mouse population last summer, he explained.
The acorns are a key source of food for the mice, a principal host for the blood-sucking ticks that carry Lyme disease.
The tiny ticks that fed on the mice last summer, and were infected with Lyme, could be spreading the disease to humans this summer, he said.
Wednesday, July 27, 2005
A New Approach to Chronic Lyme Disease
ImmuneSupport.comBy Jill Neimark
In May of this year I sat down at the beautiful Essex House on Central Park South, with a German physician specializing in internal medicine, Fritz Schardt. Dr. Schardt, who is associated with the University of Wurzburg in Germany, published an interesting pilot study in the European Journal of Medical Research in July of 2004 on the use of an antifungal drug, fluconazole, in treating chronic, advanced lyme disease. This pilot study examined 11 patients with chronic lyme. Dr. Schardt has slowly refined the protocol since then, and believes it holds great promise in treating this difficult condition—which is often misdiagnosed as chronic fatigue or fibromyalgia. Here follows our interview:
Jill Neimark (JN): What made you think of using diflucan, an antifungal, to treat lyme disease?
Dr. Fritz Schardt (FS): I was actually my first patient. I got lyme disease in 1989, and was given two weeks of doxycycline. Our country follows the protocols set by yours, so that’s what is generally recommended. I now know that was very inadequate and I do not think doxycycline should be used in early lyme disease at all. It is only bacteriostatic, meaning it inhibits the bacteria but does not kill them.
JN: I know, the same thing happened to me. At the doses they recommend, it also does not penetrate the central nervous system. I had a fever, stiff neck and bullseye rash. The stiff neck means it was already in my nervous system. Therefore I probably needed six to eight weeks of doxycycline at double the dose I was given. Higher doses will penetrate the CNS.
FS: Right. I recommend penicillin in early lyme disease.
JN: Amoxicillin is given here. Is that what you recommend?
FS: No, that’s broad spectrum, so you end up killing many bacteria, including necessary ones in your gut. I recommend smaller spectrum penicillins. The syphilis spirochete has not become resistant to penicillin, and there’s good evidence that borrelia, the lyme spirochete, has not either. In Germany, we have cefalosporine, roxithromycin, cotrim-TMPO, and clarithromycin. These are all good choices. They should still be taken for 20-30 days.
JN: Okay, well, you took doxycycline so you ended up with chronic lyme disease. What happened then?
FS: I was sick for 18 months. I was given intravenous rocephin several times. I would feel better, but then once I stopped taking the antibiotics, I relapsed. I was often bedridden and I thought I was ready for the wheelchair. Then, I developed a fungal infection, possibly because of all the antibiotics. So I was put on diflucan. This was around 1990. It was a new drug that was being used mainly for opportunistic fungal infections in AIDS patients.
JN: And what happened?
FS: I got better. But I only stayed on it for two weeks at first, and then I got worse again. So I went back on it for 30 days, and I got well.
JN: What was the dose?
FS: I took 100 milligrams twice a day.
JN: Are you completely well?
FS: I am very active and energetic and I feel quite well. I have since competed in athletic events and won them. However, I do have an occasional heart arrhythmia that I believe may be due to permanent damage from the spirochete.
JN: Tell me your reasoning as to why diflucan might work in chronic lyme.
FS: There are several reasons. First of all, it inhibits an enzyme called cytochrome P450. This is an enzyme that your liver, for instance, uses to detoxify chemicals and drugs. Borrelia has a very primitive p450 defense, so if you inhibit it, it is easily weakened. Therefore I believe that diflucan inhibits the growth and replication of borrelia. It does not necessarily kill it. In addition, it penetrates well into the cells and into the nervous system and brain, where borrelia may hide.
JN: What is your current protocol?
FS: I recommend 200 milligrams a day, for 50 days. There are now 200 milligram pills available, so once a day is fine. Then I recommend 20-30 days of any of the penicillins I mentioned. You may have to go through several cycles of this protocol. You must also be very aware of other drugs that act on the p450 enzyme system, specifically a subset that inhibits CYP3A4. You should not be taking any of these drugs at the same time as you take diflucan.
JN: What are some of these drugs?
FS: There are many, and it’s best to check with your doctor. Some common ones are erythromycin, amitryptylin, midazolam, Lovastatin, and others.
JN: I hate antibiotics. Do you have to take the penicillin?
FS: I understand, many lyme patients come to hate antibiotics because they have to take so many of them for so many years and are still ill. In fact, I also was made ill by the antibiotics.
JN: They really disrupt your digestion.
FS: Right, that was my problem.
JN: So, this protocol is your best one-two punch against borrelia, but you don’t have to take the antibiotics if you truly hate them.
FS: Right. In addition, diflucan has a slow half-life so it can slowly build up in your bloodstream. Sometimes patients call me after a few weeks and say they are feeling very ill on the protocol. Perhaps it’s a herxheimer, or perhaps it’s that the levels of diflucan are higher than they can tolerate. So I say, take a 3 or 4 day pause, and then go back on the protocol. This is perfectly acceptable.
JN: What happens if you have a weak p450 system? Have any of your patients have raised liver enzymes from the diflucan?
FS: I have been lucky, not one of my patients have had raised enzymes. It is generally well tolerated. If it is a problem, however, you can lower the dose of diflucan. This would be overseen by your doctor. I recommend 100 milligrams in pediatric cases.
JN: How many patients have you treated now?
FS: At least eighty.
JN: What is the most difficult case you’ve had?
FS: I have one 75-year-old patient who has had lyme for 18 years. He was very ill. He has had to do this cycle of diflucan and penicillin 3 times. He is much, much better. In fact, he’s so happy with his improvement he called the drug manufacturer to tell them they need to run a publicity campaign to promote diflucan for chronic lyme disease.
JN: Some patients on some internet groups are adapting your protocol, probably in concert with their doctors, and I’d like to know what you think of this. They are suggesting staying on diflucan for 9 months, and some of them are adding in low-dose minocycline. Are you aware of this?
FS: No, I am not aware of this.
JN: What do you think of the idea?
FS: I believe in the narrow-spectrum penicillins for borrelia, not the cyclines.
JN: What about 9 months?
FS: That remains to be seen. Perhaps, like tuberculosis, some patients will need to be on diflucan at least six months or more. Borrelia is a very sophisticated organism, and one of the few bacterium with two cell membranes. There is much we still have to learn about it.
Senate bill targets Lyme disease
ResearchResearch - UKSenator Chris Dodd, D-CT, has tabled a Senate bill intended to increase federal efforts to tackle the public health threat posed by Lyme disease. With co-sponsor Sen. Rick Santorum, R-PA, Dodd has introduced the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005, S1479, to address a serious but underreported and often misunderstood disease.
Lyme disease is named after a town in Dodd’s home state where it was first identified in 1977. The parasite transmits via biting ticks, causing generalized influenza-like symptoms and, if left untreated, can lead to severe heart, neurological, eye, and joint problems. Its diagnosis is often made more difficult by the co-transmission of other tick-borne diseases such as ehrlichiosis and babesiosis and official figures may underestimate the prevalence of Lyme disease by a factor of 10.
Dodd’s bill would authorize the establishment a tick-borne diseases advisory committee at the Department of Health and Human Services. This would help coordinate the efforts of different federal and state authorities in controlling the disease and identify priorities for research on its prevention, diagnosis and treatment. The committee would also advise on measures to increase awareness of the general public and healthcare professionals of the impact of the disease.
Letter to Greenwich Time editor
Kennebec Journal - Augusta,ME,USAThank you for the article "Coping with Lyme" (July 23). I too have Lyme disease.
I went untreated for more than a year because doctors relied on unreliable Lyme disease tests. Eventually, I had to go out of state for treatment.
Because I went untreated for so long, I have neurological complications that are difficult to treat.
If I learned anything from this debilitating disease it is that people must be their own best advocate.
I have run into many people who say they were "tested" for Lyme disease and their tests came back negative.
Those who continue to have symptoms should learn about the disease and find a doctor who will make a diagnoses based on symptoms, not on unreliable tests.
Cora Prentice
Whitefield
cpdanderhill@msn.com
Tuesday, July 26, 2005
It starts with a tick
Tallahassee DemocratBy Kathleen Laufenberg
DEMOCRAT STAFF WRITER
Forget Dracula. Beware the bite of the tiny tick.
Some of these bloodsucking parasites can leave you with more than a creepy-crawly feeling or painful bite. Some transmit diseases, including Lyme, an inflammatory illness that can appear first as a rash, headache and fever and later as arthritis, neurological damage and cardiac abnormalities.
"I think it's a huge problem," said Elizabeth Markovich, a family nurse practitioner in Tallahassee who treats people with Lyme. "It can be very hard to diagnose," particularly in people who have unknowingly had it for a long time.
Lyme sufferers include writer Amy Tan, who spoke in Tallahassee in February, and former Florida State University quarterback Wyatt Sexton, diagnosed earlier this month. Tan, author of "The Joy Luck Club," went undiagnosed for several years and had advanced symptoms that included hallucinations and outbursts bizarre enough to make her think she had Alzheimer's disease. Sexton was involuntarily hospitalized in June after police found him on Spoonwood Drive referring to himself as God.
Not surprisingly, when people exhibiting such strange behavior say they have Lyme disease, the finding can become an eye-rolling controversy. Some doctors don't give credence to a Lyme diagnosis in such cases - or in cases involving people who can't recall a tick bite, who exhibit generic symptoms such as fatigue and headache, or who complain of problems associated with simply growing older, such as arthritis and forgetfulness. Some insurance companies also refuse to pay for the more comprehensive - and expensive - tests for detecting Lyme.
Further complicating the picture here in the South is that Lyme traditionally has been connected with tick bites in the North.
Yet in the wake of Sexton's headline-grabbing diagnosis, other Tallahasseeans with Lyme disease came forward to tell their stories. They want more people - including doctors and insurance managers - to be aware of the disease and its wide range of symptoms.
A prompt diagnosis
In a classic case of Lyme - so named for its 1977 discovery in a group of arthritic children living in Lyme, Conn. - the infected person finds a tick and removes it. According to most accounts, the tick needs to be attached at least 24 hours. It doesn't need to be big; tiny seed ticks transmit the disease, too, and are considered the big culprits. Because of the seed ticks' size, people are less likely to spot them.
A week to 10 days after the tick is removed, a red, bull's-eye-shaped rash (usually in the area of the bite) appears. The CDC says about 80 percent of those bitten will get such a rash; Markovich said it's more like 40 percent. Along with the rash come profound fatigue, fever, headache, stiff neck, joint pain and muscle aches.
Stan Rosenthal, a Tallahassee forester, recently experienced those classic symptoms - except he didn't see a rash - about a week after he removed a tiny tick from his belly button. He probably picked up the tick the day before, he said, while guiding Girl Scouts on a nature walk.
"I started feeling achy.... I went to bed, waking up on and off all night and not feeling very good. The next morning, I got up and had a headache along with a (100.8-degree) fever, and I was real achy."
Because the 46-year-old is a longtime forester, he has sat through Lyme training. And he knows about 10 people who have the disease. So eventually, as he thought about his symptoms, "I said, 'Wow! I wonder if I've got Lyme disease?'
"I've been bit by ticks many times before," he added, so Lyme wasn't the first thing to pop into his mind.
He consulted a doctor, who confirmed Rosenthal's self-diagnosis. The forester began taking oral antibiotics and is finally beginning to feel better. According to the Centers for Disease Control, when Lyme is promptly diagnosed, three to four weeks of oral antibiotics is generally enough to knock it out.
Rosenthal said he expects a full recovery.
'A nightmare'
For Terry Nardo and Lynne Willson, the road to a Lyme diagnosis was more like a meandering, potholed trail.
Neither can recall a tick bite or a bull's-eye rash, the key information that often triggers testing for Lyme.
Instead, Nardo's problems began two years ago at work. As a team coordinator at Benedict Engineering, she uses a transcription machine that requires pressing down a pedal. Although she didn't remember injuring her right foot, the 44-year-old started having problems pressing the pedal down. The weakness got worse - and worse.
"It got bad enough that people were asking, 'What's wrong with you? Why are you limping?' ... I knew deep down there was something wrong."
Her first stop was to her primary-care doctor, then to a specialist who later left her a recorded message saying she had an autoimmune disease, possibly lupus.
"I was devastated," said Nardo, who got the message at work. "I was in shock."
Next, she saw a rheumatologist.
"He said, 'Oh, you don't have lupus or any blood disorder.'"
He sent her to a neurologist. She underwent a battery of tests, including five MRIs, and was told she had peripheral neuropathy.
Nardo's symptoms kept getting worse. Finally, she took the advice of a co-worker and got tested for Lyme. The tests came back negative. She requested the more comprehensive tests. Her health insurance wouldn't pay for them, she said, so she did.
They came back positive for Lyme. Now she's on antibiotics - and relieved to have what she says is a correct diagnosis. How long she'll have to take the drugs, she doesn't know. But some doctors say such patients need antibiotics a year or longer.
In the meantime, she tires easily. Her balance is poor. She has fallen. She fears falling again. On bad days, she even uses the walls to help her walk down hallways.
"It's been a nightmare."
More study
Willson, 50, was finally diagnosed with Lyme two years ago - after being misdiagnosed with leukemia and other ailments and seeing various doctors for years. Her symptoms today include arthritis and foot and leg pains. She has trouble driving because it's hard to move her neck. She also has memory problems.
"There have been times when I thought I was really losing my mind," she said.
When she was finally diagnosed, "I was blown away," she said. "I started reading about Lyme and it was all there, in the literature. All the pieces of the puzzle started fitting together."
Now she faces problems getting her health insurance to continue paying for the antibiotic treatments. One further complication in her case is that both her grown children have been treated for Lyme. Willson is convinced she gave it to them in utero. The CDC has not stated conclusively that Lyme can be transmitted that way.
Willson said she thinks she got the disease when she was about 11. One of her thighs swelled to nearly twice its normal size, and doctors nearly amputated. Eventually, the swelling subsided and she went home. Now, she said, she thinks the swelling was caused by a tick bite that gave her Lyme disease.
"There are probably many people," Markovich said, "who have been exposed to it and have never gotten sick. And there are probably different strains of it."
Both of Willson's children have been treated. She has, too, but said she needs more.
Amid the controversy that surrounds the disease, however, one thing seems clear: More study is needed on Lyme.
Bill aims to spotlight Lyme disease issues
Norwalk AdvocateBy Christiana Sciaudone
Staff Writer
STAMFORD -- Kelly Lyons had been too skinny for as long as she could remember. Fatigue and weakness plagued the 16-year-old. She had double vision through elementary school, which surgery only worsened.
Then her brother, Jamie, 13, at times, couldn't walk. His throat would close up; he had asthma and allergies. His pupils stopped dilating.
Their mother, Ann, thought she had arthritis, which she treated with ibuprofen.
The family, which lives in the Old Greenwich section of Greenwich, dealt with the long list of health problems individually, until Jamie, then his sister and mother, tested positive for Lyme disease early this year.
The family spoke about their plight with U.S. Sen. Christopher Dodd, D-Conn., at a news conference yesterday at Stamford Hospital.
"The rising number of the infected indicates that far more needs to be done," said Dodd, who yesterday introduced the Lyme and Tick-Borne Disease Prevention, Education and Research Act on the floor of the Senate.
The bipartisan legislation, co-sponsored by U.S. Sen. Rick Santorum, R-Pa., seeks $100 million for increased and coordinated federal prevention, treatment and research of Lyme and other tick-borne diseases, and the establishment of an advisory committee of federal agencies, patient organizations and clinicians.
Dodd said he expects the bill to pass easily considering the number of states hit by the disease.
Lyme disease comes from ticks, which get infected by sucking on white-footed mice. Symptoms, which can range greatly, include fever, headache, fatigue, skin rash, facial paralysis, joint swelling, loss of coordination, liver malfunction, memory loss and hallucinations.
In 2003, 21,273 cases of the disease were reported nationwide, which represents a decrease of 23,763 from 2002, according figures from the federal Centers for Disease Control and Prevention.
However, Dr. Michael Parry, director of infectious diseases and microbiology at Stamford Hospital, noted that the change is due to controversial new reporting procedures and that actual number of Lyme disease cases is far higher and growing.
Last year, 18 cases of Lyme disease were reported in Stamford and eight in New Canaan, according to the state Department of Public Health. Norwalk had 19 cases, Darien had 12 and Greenwich had five.
Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics, according to the Centers for Disease Control.
However, "lab tests are not as good as we want," Parry said. "The diagnosis is very elusive, very subtle."
Parry said that of about 1,300 tests given each year, about 10 percent come back positive, though the results aren't always accurate.
"We have problems of underdiagnosis, particularly for people who have been ill for a long period of time," Parry said. Problems of overdiagnosis also exist, he said.
"We as clinicians are very frustrated and patients are very frustrated by the lack of tools to make a better or the right diagnosis," Parry said. "We need help . . . both on the treatment side and on the diagnosis side."
The Lyons family -- except for Dad, who was spared -- are now all on antibiotics, and each has gotten worse before getting better.
For seven weeks in late winter, while on medication, the disease ate the lining of nerves in Jamie's feet, so he couldn't bear to have anything -- not even socks or bedsheets -- touch them, Ann Lyons said.
Yesterday, he was in much better condition, and walked without a problem, though he wore blue sunglasses to protect his pupils.
His mother, who began the antibiotics months ago, no longer has symptoms of arthritis.
Kelly, who started taking antibiotics in June, is optimistic. "I look forward to just having more energy," the teenager said, "to just living a normal life."
Lyme disease: It's the Great Imitator
Bennington BannerBy PATRICK G. RHEAUME
Staff Writer
MANCHESTER -- If you feel tired or irritable or if you have a headache this morning, it may be just another Monday. But if it persists, or if you've felt this way for a long time, you could be experiencing the symptoms of Lyme disease.
The disease, which even doctors often have difficulty identifying, will be the subject of a public meeting at 7:30 p.m. on Aug. 5 in the Smith Center at Burr and Burton Academy. Dr. Brian Fallon, a professor of clinical psychiatry at Columbia University's College of Physicians and Surgeons, and Pat Smith, president of the Lyme Disease Association, will speak at the event. A question and answer period will follow their speeches.
Many doctors and nurses call Lyme disease "the Great Imitator." In some cases, Fallon said during an interview on Saturday, the symptoms of Lyme disease are mistaken for something else, such as chronic fatigue syndrome.
He plans to talk about "what people look like and feel like when they have the disease."
A variety of symptoms makes the disease difficult to diagnose.
Lyme disease, he said, is more than just a rash or arthritis pain. Symptoms often include headaches, light and sound sensitivity, severe fatigue, irritability, manic episodes, cognitive problems and memory loss.
Fallon recently completed a four-year study of the disease, funded by the National Institutes of Health.
Prior to the study, Fallon said, doctors were confused about how to treat patients with the disease.
"Some recommended several treatments with antibiotics, others said that after one round of treatment the Lyme disease was gone," he said. "But this was all conjecture."
He will discuss some of the results in his speech, which are available online at www.columbia-lyme.org .
Dr. Stephanie Woolwich-Holzman, a veterinarian and an organizer of the event, hopes audience members will use the information provided by Fallon and Smith.
"We will also present a few facts about the growing incidence of Lyme disease in Vermont and the incidence of the presence of the causative agent, the bacterium Borrelia burgdorferi, in ticks that have been tested in various areas throughout the state," said Woolwich-Holzman.
"Right now, there's legislation before Congress that would increase funding for Lyme disease research," she said. "We want people to ask their senators or congressmen to support the bill."
Woolwich-Holzman thinks event will be beneficial for doctors and nurses.
"Dr. Fallon had offered last year to give a presentation [in Bennington] as a form of continuing education for local health care providers," said Woolwich-Holzman. "Given that he is an expert from a prestigious institution - Columbia-Presbyterian Hospital in N.Y.C. - I had thought that this would have been a marvelous opportunity for the health care providers in our area to hear cutting edge information from a cutting edge researcher about Lyme disease, a growing threat in Vermont. To my great disappointment, Dr. Fallon's offer was flatly declined."
About 70 people came last year to a similar event in the Northshire, she said, but organizers hope to see more medical professionals in attendance. "We've asked people to talk to their physicians about coming," she said.
Although the event deals with a serious subject, planning has not been entirely humorless. Woolwich-Holzman has distributed lime green flyers to publicize the speeches.
On Aug. 6, the second annual Gear Up for Lyme bike climb will take place on Mount Equinox.
Saturday, July 23, 2005
Lyme disease is a little-known threat
The Shreveport Times - Shreveport LABacterium-based and spread by ticks, Lyme disease affects the joints, heart and nervous system.
But local physicians are skeptical about whether it's found in northwest Louisiana, according to Lyme disease experts. The doctors generally don't consider the disease when its symptoms appear on patients, allowing it to infect many people and go undiagnosed and untreated.
"Not enough doctors know to test for it," said Pat Smith, president of Lyme Disease Association, a New Jersey-based nonprofit dedicated to research, education, prevention and patient support. "Not enough of the public know about it. They say, 'We don't have Lyme disease (in Louisiana).' They're just not thinking about it."
Louisiana had just 87 diagnosed cases from 1994 to 2003, according to the most recent figures available from the Centers for Disease Control and Prevention in Atlanta. But that number is roughly 10 percent of the actual cases because CDC uses narrow and restrictive criteria for classifying Lyme disease cases, which serves to underscore its reach and impact, Smith said.
Dr. Jonathan Forester agrees and has anecdotal evidence to support it. Forester, who specializes in outpatient medicine, allergies and psychopharmacology, is treating about 300 patients with Lyme disease at his Pineville practice -- most of whom call Louisiana home.
"I'm truly alarmed by the number of people who have it. And it's not like I'm out there looking for it," he said. "I've reported my Lyme disease numbers here, but they will not count them at the state epidemiology department."
Jeannine Jalanivich is one of Forester's patients who knows firsthand about local doctors' skepticism regarding the disease.
About two years ago, the Mansfield woman experienced "stabbing" pains all over her body, constant fatigue and a low-grade fever that wouldn't go away. But it wasn't until she started losing her hair that she truly became alarmed.
"I thought I was crazy," the 29-year-old nurse said. "You have a lot of weird symptoms and no diagnosis of anything. 'What's going on with my body?' you start wondering."
Jalanivich remembered a lot of local doctors hesitating to point to Lyme disease because it has proved difficult to detect. Still, she added, Lyme disease is something the community, medical and otherwise, needs to follow closely.
"As years come, we're going to learn more about it," she said. "It makes sense that we have it here. Ticks travel on animals, and they're not localized to just one state."
While Jalanivich said she still experiences residual symptoms such as fatigue, the antibiotics and other medications she took for about six months have greatly improved her overall quality of life.
People with the disease need their physicians to identify it before they can properly treat it, Forester said, and Lyme disease needs more respect and attention for that to happen. "It needs more national recognition before we get more of a response."
Coping with Lyme Disease is nightmare for some Mainers
MaineToday.com - Portland,ME,USAVASSALBORO -- Linda Anderson sits with her right leg propped on a stool, her swollen knee one of the signs of a disease she's dealt with for months.
An otherwise healthy 47-year-old, Anderson nearly lost her house this spring because Lyme disease made it impossible for her to continue working as a certified nurse assistant. With the help of family and friends, Anderson was able to keep the bank from taking her beautiful home in the Vassalboro woods.
But it could still be some time before she can return to a job she loves, but one that keeps her on her feet eight hours a day.
"I can't be on my feet for more than 20 minutes tops," she said.
In some ways, Anderson is lucky. Although she believes the tick that made her ill probably bit her last fall, she was able to get a diagnosis fairly quickly this past spring.
For some who were infected years ago, diagnoses took years -- precious time wasted on false starts and treatments that did nothing to stop the disease from spreading.
Experts believe Lyme disease has been around since the 1800s but was not identified until the 1970s, when a group of housewives from Connecticut demanded to know why many of the children in their neighborhood were diagnosed with rheumatoid arthritis, said Dr. Beatrice Szantyr, an internist and pediatrician who lectures in Maine on the illness.
For years, people in Maine were told the disease hadn't made its way this far north.
But it's here now, and Szantyr and those with the illness say not enough people understand what it can do.
Emmy award-winning musician and director Bill Chinnock calls it an epidemic in Maine, citing several people in his Yarmouth neighborhood -- including him and his wife -- who have Lyme.
He believes there are far more than 200 new cases each year in Maine, despite information from the state Bureau of Health.
But Szantyr hesitates to use the word "epidemic." Although she believes it's underreported by doctors, she does not want to alarm the public by using such a highly-charged word.
And the state's top doctor, Dr. Dora Mills, director of the Bureau of Health, said although the number of cases has grown since the disease first made its way to Maine in the mid-1990s, it's not an epidemic.
"An epidemic is an unusual and or unexpected rise in the incidence of a disease," she said. "I would not characterize Lyme disease as an epidemic."
As an emerging disease, doctors in Maine and elsewhere are still learning about how to spot it and treat it, she said.
The common belief about Lyme is that if you have it, you'll see a "bull's-eye" rash around the site where the tick bit you.
But that's not always the case.
LINDA'S STORY
Linda Anderson never saw the telltale bull's-eye. Only about half the people who develop Lyme do.
If she had seen it, Anderson said she would have known sooner that she needed treatment for Lyme.
She believes she was probably infected last fall while playing golf or doing yard work. It began to be a serious problem this spring, when it became difficult, then impossible, for her to work.
Once she got the diagnosis, she first started with a four-week course of antibiotics, then had a port attached to her chest that administered IV antibiotics for another 28 days.
After that, she went to see a Portland specialist, who then referred her to an arthritis specialist.
"He said you've got Lyme arthritis," she said. "This has been going on for months."
In addition to her knee problems, her neck was swollen and her right ankle is still larger than normal.
She hasn't been to work since March 19.
When she started to worry about making her house payment, she asked around to see if there were any social service programs that could help her out of a jam. She wasn't looking for a handout. She would pay the money back. She just needed some help to get her out of a temporary bind.
"I went to Human Services," she said. "It was the most degrading thing I've ever done in my life."
When she could find no government help, her family chipped in to pay the electric company and her mortgage so she could stay in her home.
She now covers herself with a product containing the insect repellent DEET when she goes outside.
TICK TALK
In the not too distant future, Szantyr hopes protecting against Lyme disease will be as common as buckling a seat belt or putting on a life jacket in a boat.
After all, it is a preventable disease if people cover up when they are outside, apply a bug repellent with at least 23 percent DEET, and check themselves for ticks at least once a day, she said.
Szantyr, of Lincoln, spends much of her time traveling the state and country lecturing about Lyme, letting people know that it's a certain tick -- the deer tick, which is the size of a poppy seed -- that carries the potentially debilitating disease.
For doctors, it can be difficult to diagnose Lyme, she said.
It doesn't show the same symptoms in every person and the tests developed to detect it aren't sensitive enough to pick it up in every patient.
"The lab can't make or break any diagnosis," she said. "We doctors do like it when the lab can give us the answer."
In Maine, the ticks that carry Lyme are most prevalent along the southern coast, but it is moving north along the rivers, Mills said. There have been cases reported in every county in Maine, although Mills said it's important to remember that people travel, too, and some may have picked it up elsewhere.
Mills is especially careful about checking her children at bath time, saying she once found a tick on her 3-year-old after he had been playing in a pile of leaves.
She said keeping grass cut short, moving wood piles away from areas where children play, and not piling up leaves are easy tips to reduce the chance children will be exposed.
"People should feel at ease to go outside and play, but a couple of quick precautions can reduce the incidence of Lyme disease," she said.
While new cases spotted early are easier to treat, some people got the disease before it was known to be a problem in Maine.
LUCINDA'S STORY
Lucinda Gidney, 48, of Albion, has been struggling with Lyme ever since, 11 years ago, "I had the worst flu I had of my life," she said.
At the time, she was working three jobs. She, too, did not see a rash.
She had been camping that year, but wonders if she was bitten by a tick in her back yard.
She had trouble concentrating and had vertigo. It was hard to get in and out of a car. Her legs were weak and her throat was sore for a year.
She had an irregular heartbeat and chest pain, and was extremely tired.
Her last day of work was Sept. 14, 1994.
At various points, with various doctors, she was told she might have fibromyalgia, multiple sclerosis or chronic fatigue syndrome, or that she was mentally ill.
"I really thought I was dying and nobody could tell me why," she said.
After seven years of searching for a diagnosis, three people in one week told her to get tested for Lyme. The first test came back negative.
She found a doctor in New York state, a Lyme specialist, who found she had what's known as a co-infection that had become entrenched after seven years without treatment.
She takes nearly 50 pills a day, which include two antibiotics, a heart medicine and several herbal remedies.
Her husband, Alan, also has it.
Gidney helps run a support group at Inland Hospital in Waterville, where about a dozen people come each month for help.
"I haven't read a book in years because of the effort it takes to read and remember," she said. "I was a voracious reader before that."
BILL'S STORY
Bill Chinnock and his wife, Terry, also have struggled with Lyme for years, spending three years on the IV antibiotics. Chinnock, known to many in Maine as a blues guitarist, said they both were disabled by the disease.
"There's a dropper full of doctors in Maine who understand the disease," he said. "I saw every doctor in Maine for a year before I was diagnosed out of state."
He's able to work now and wants to alert families that they can take precautions to prevent Lyme, such as covering up when going outside and using DEET to keep the ticks at bay.
"This initiative needs to not be a fledgling attempt to wave a small flag," he said. "There needs to be an educational campaign for the general population."
World of wonder in Lyme bacterium
By HAROLD ROYBy HAROLD ROY
I don't know much about God or science, but find myself fascinated by the current debate between intelligent design advocates and evolutionists which is going on largely in Bible belt states. The ID folks argue that some intervening intelligent being creates life in its multiplicity of forms. The evolutionists see a random and incessant process of slow changes producing the most robust life forms, for that time and place, anyway.
I personally believe that evolution is God's way of getting the results he wants, and that he has a lot of fun doing it. But I don't know for sure, and don't expect to.
Each of us is awesome-a universe of billions of cells, awash in oceans of bio-chemicals. One celled bacteria were quite different, dull, or so I thought. I was raking leaves at a home near Lake Wequaquet on a Saturday in April 1986. On Monday, I felt very weak, and was at a doctor's by Thursday. I had three reddish oval rashes on my chest, but back then, physicians were looking for the now ''classic'' bulls eye rashes, so my Lyme Disease went undiagnosed.
I recovered some on my own, without treatment, but had numerous relapses over the next months. A year after the tick bite, I could barely get out of bed. For the next eight years, I was diagnosed, wrongly, with Chronic Fatigue Syndrome. In 1995, my Lyme was detected by an astute physician to whom I went to for another problem. In the next years I received substantial oral anti-biotic treatment. It lifted me out of the zombie category, but I never will be genuinely healthy. All the symptoms continue, less severe, and so does the characteristic cycling. Now, depending on who I ask, I have Chronic Lyme Disease with continuing infection and an up-regulated immune system, or Chronic Fatigue Syndrome, cause unknown , or Fibromyalga Syndrome, cause unknown, or Post Lyme Syndrome, with an auto-immune etiology.
I became curious about why medicine has so many different views of the same set of symptoms.
The dispute is over whether the causative agent of Lyme, the spirochete bacterium Borrellia Burgdorferi (Bb), eludes both the immune system and significant courses of antibiotic treatment, as some say, or if the host individual experiences some sort of post-infectious syndrome. The debate is heated, to say the least. Other spirochetes cause syphilis and Relapsing Fever.
These Bb little guys are only 20 microns, 20 millionths of a meter long. They move with the aid of flagella, like little worms with several sets of legs. They sequester in numerous tissues, preferring neural tissue. Bb's locomotive capacities allow it to move from through the skin and into the blood stream, then into other parts of the body including the brain.
Antigenic variation is another tactic of Bb survival, and is a very interesting phenomenon. Bacteria have Outer Surface Proteins (OSPs), or antigens, to which the humoral immune system develops antibodies which then attack and destroy the bacterium. Antigenic variation gives the bacterium the capacity to up-regulate (increase the number) or down regulate specific OSPs, presenting a complex and varying pattern to the immune system. A set of antibodies sufficient to control the bacteria's spread at one point becomes inadequate later.
Other cards up Bb's sleeve are that, in the host, it can exist in alternate forms, against which antibiotics are ineffective. It has a cyst form, an egg- like mode from which the full bacterium can later emerge.
Another variation is a cell wall deficient form, which protected it from antibiotics which attack cell walls. Bb also exchanges DNA with others of its kind. This is the mechanism which produces bacterial antibiotic resistance, which has become a very serious medical problem.
Bacteria have been shown to communicate bio-chemically with each other. Bb may be one of those with this capacity, and there is evidence that it produces neurotoxins.
So, our agile little friend is quite gifted, a wondrous thing really, not merely a brainless one cell simpleton. It uses it complex strategies to survive and reproduce, as do we all. As with the AIDs virus, it is small but not fragile, and is no easy foe. It seems quite plausible that it may be extremely hard to eradicate.
It was Blake who asked that we see a world in a grain of sand. I have come to understand that there is a stunning beauty to Bb and other bacteria. Even the smallest living things, including those which may harm or kill us as they live out their lives, are gloriously endowed.
Whether life is designed or evolves, or both, it displays a complexity and magnificence to its many forms that speaks of more than we can ever know.
Harold Roy lives in Harwich.
Friday, July 22, 2005
Unrecognized epidemic creates problems for many
Gazette.NetIt is hardly ever talked about, and most who have the disease don't even realize it, even if they have been tested. Lyme Disease is a major medical problem in the US, according to the Lyme Disease Association of Pennsylvania.
The problem with Lyme Disease is that the testing for it is not very reliable. Many will have the test done and it will come back negative. Doctors will then treat the patient for something else, and the problems will only get consistently worse.
Fortunately for Carrie Ortiz of Mount Airy, her test had come back positive when she was tested. She was treated with antibiotics for several weeks. More testing was done, and the unreliability of the testing was showing.
"My tests were coming back with some positive and some negative," said Ortiz.
Ortiz was diagnosed about five years ago, and has actually had symptoms for about six years now.
"A negative blood test does not completely exclude the disease," said Dr. Nathan Wei, a rheumatologist in Frederick. "And a positive test alone does not confirm the disease."
According to Johns Hopkins University Arthritis Center, Lyme Disease is a bacterial infection usually contracted from a tick bite. The symptoms are very similar to the flu and if untreated can cause severe damage or even death.
The most common symptom is a bull's eye rash that will develop around the initial spot of the bite.
Sometimes symptoms will show up right away, sometimes they will begin slowly and other times they will take weeks to show up. One sign that should be taken with precaution is flu-like symptoms in any season besides winter.
Ellie Bonde of Mount Airy had noticed a bull's eye mark across her shoulder and after 48 hours the mark was gone completely. Fortunately she went to the doctor the same day she noticed it. The mark was so obvious, no testing was done, and it was verified by both a dermatologist and doctor that she had Lyme Disease. She was immediately put on 100 milligrams of Doxycycline twice a day for three weeks.
"I was really lucky to have it in a place where I could see it," said Bonde of her bull's eye.
Bonde keeps a chart of all symptoms she is developing to give to her doctor. This is recommended by Johns Hopkins for people who are experiencing similar symptoms.
An infected deer tick must be attached for 24 for 48 hours before it can transmit Lyme Disease, according to Dr. Wei.
The problem with testing is not all doctors are as knowledgeable as they need to be to treat the disease. According to Dr. Wei, Lyme Disease is a form of arthritis because it affects the joints and muscles. The symptoms of Lyme are very similar to those of rheumatoid arthritis.
"Lyme Disease is one of over 100 different types of arthritis," said Dr. Wei.
One Lyme patient, who has asked not to be named, was treated for rheumatoid arthritis for about 10 years before it was proven that he was actually suffering from Lyme Disease. The body and muscles aches along with the fatigue he was suffering are some of the same beginning signs of rheumatoid.
Along with the disease, other diseases referred to as "co-infections" can be carried with it. Some of the common co-infections are Ehrlichiosis, Babesiosis, Bartonella, and Rocky Mountain Spotted Fever.
The patient who has asked not to be named is also suffering from Babesiosis along with the disease.
His treatment for his infections is a little different than the treatment Ortiz is receiving. He has what is referred to as a pick-line in his arm. It runs to his chest to send the antibiotics through his body. The worst part is that the tube must stay in all the time because his testing is done five times a week and it is impossible to keep taking the tube in and out.
When Ortiz was diagnosed, she had trouble finding a doctor in the Maryland area that was knowledgeable enough to treat her correctly. Both she and her husband have the disease. Together, they make a 12-hour round trip to Hermitage, Pa., where they receive treatment once a month. They are coming up on their 14th month of treatment. Although they are doing much better than they were last year, they both still have symptoms.
"The bacteria changes shape to hide from the antibiotics," said Ortiz. This makes it hard for it to be treated because the antibiotics won't recognize the disease and won't be able to fight it.
Although there are more doctors in the area now who specialize in the disease, Ortiz pays for all of her treatment out of pocket because insurance doesn't cover all the procedures and testing that need to be done. It would cost them more than $1,000 to be re-tested by a new doctor in the area and it would have to be out of pocket.
The problem with many doctors who aren't specialized in the field is that "they try to follow the Center for Disease Control (CDC) guidelines and won't think out of the box," said Ortiz.
"The disease is not recognized as the epidemic it is," added Ortiz.
"Since Lyme Disease may look like many other types of arthritis, the diagnosis is not always an easy one to make," Dr. Wei said. "Over-diagnosis is probably more common than under diagnosis."
Ortiz and her husband have developed a support group in Mount Airy at the Mt. Airy Bible Church. They meet on Friday, sometimes Saturday depending on the calendar, once a month.
It is a place for people to come and just talk to each other and know that they aren't the only ones out there feeling this way.
"With the way we were feeling, we figured people needed support," said Ortiz.
Some visitors to the group may not have the disease, but know someone with it or have information on it to share with those at the meetings.
The important matter for people to realize is that many are walking around with Lyme Disease and not getting properly treated because their doctor may not use a reliable test. The best test to use to find an answer is the Western Blot Test, which is recommended by Johns Hopkins. It is important to find a lab that makes a special effort to focus their testing on tick-borne diseases and have the procedures available to make the tests more reliable.
If a tick is found, it is possible to save the tick in either a plastic bag or a bottle and take it along to the doctors, according to the Lyme Disease Association of Pennsylvania. There is testing that can be done for a price, but it is a precaution that may be worth the money.
Two Limestone women get reprieve from ALS diagnosis
The News-Courier"I never thought I'd be so happy to be diagnosed with Lyme Disease," says 54-year-old Vickie Crawford, "but when you consider the alternative..."
Crawford - who has been on a nearly two-year odyssey to get a diagnosis for symptoms that began as a numbness in one side of her lip and grew to include facial numbness, extreme difficulty in swallowing, and slurred speech - had gotten an even more frightening diagnosis of progressive bulbar palsy, an onset of ALS (amyolateral sclerosis, or Lou Gehrig's Disease). But Vickie and husband Gary became their own advocates, researching and networking until their path led to similarly misdiagnosed patients; a research organization with a highly reliable test for Lyme Disease; and a Mobile physician who specializes in treated the often-misdiagnosed illness.
Vickie, who recently retired as librarian of Athens Middle School to give her full attention to getting well, thought she had a sinus infection when in 2003 she noticed some overall achiness and a numbness in one side of her mouth. Despite over-the-counter medications, Vickie's symptoms continued on and off for six months.
When her doctor X-rayed her sinuses and found no infection, he feared a brain tumor and sent her for an MRI. When the test revealed nothing, Vickie was sent to a neurologist who suspected an aneurysm, but a scan of her arteries showed no problem there. The numbness, meanwhile, spread to Vickie's left cheek, then to her forehead. The neurologist investigated the possibility of Bell's Palsy without the drooping.
In February of 2004, a neurologist in Birmingham asked Vickie if she could recall any extraordinary event that might explain her problems. Vickie told about finding a deer tick attached to her shoulder in May of 2002. After she and Gary had spent an afternoon walking around on river property, she had found a tick crawling in her hair. She'd showered, shampooed, and checked herself carefully that night, but the next morning she found a tick attached to her shoulder. She had gone to a medical clinic where the doctor removed the tick, put her on a two-week course of antibiotics, and told her to come back if she noticed a bull's-eye rash. The rash never appeared and so she had never gone back.
"His (the Birmingham neurologist's) comment was, 'Oh well, if you were on antibiotics for two weeks, there's no way it could be Lyme Disease.'"
Tests performed on the 12 vials of blood he drew showed nothing conclusive.
From February to May, Vickie worked with a chiropractor for neck stiffness. When she reported difficulty swallowing, he sent her to another Birmingham neurologist who ordered another MRI and recommended that she wait six months to see if the symptoms worsened.
"I told him, 'You don't understand,'" said Vickie. "I worry about choking every time I try to eat. School starts in a month. I've got to get some help. His comment was, 'You might learn to take smaller bites.'"
After a free consultation with a chiropractor they'd found in the yellow pages proved disappointing, Vickie went back to her regular M.D. By then, her physical deterioration was obvious: She'd gone from her healthy weight of 115 to just 90 pounds, and she'd lost muscle tone in her neck and shoulders. In the process of eliminating possibilities, he sent her to a rheumatologist, and to the hospital for an endoscopy where the technician told Gary, "I've never seen anything like this before. She has no gag reflex at all. You'll have to watch her closely. She could choke on anything."
Then came the worst news to date: The neurologist told her he suspected ALS, and sent her to a doctor in Birmingham for another opinion. After an EMG, a painful procedure in which, says Vickie, "they stick needles in you and watch you twitch," this neurologist said Vickie had progressive bulbar palsy. That was in October of 2004.
A trip to Mayo Clinic in February 2005 confirmed the diagnosis, and a pulmonary test measured Vickie's breathing at 85 percent.
But the following month came the first glimmer of hope when Vickie's niece told her about a woman who does microcurrent therapy in Indiana and has had success in helping patients regain muscle usage. The Crawfords took their mobile home to Indiana and parked in a campground while Vickie received two treatments a day for a week.
As they worked together, the therapist told Vickie about one of her patients who had secondary Lyme Disease and in her research had found out it mimicked other illnesses. That patient shared her research with Vickie and recommended she visit a nutritionist in a nearby town.
The Crawfords didn't really want to go. Vickie was already on a restricted diet. But their new friend had been so helpful. They went out of obligation - and they're glad they did. The nutritionist and registered medical technician gave Vickie a visual contrast test - a vision test similar to ones that test for color-blindness, except that this test can be an indicator of Lyme Disease. Vickie scored 75 percent. The Crawfords had learned that tests for Lyme Disease can be unreliable, but the nutritionist told them about a highly reliable test by Bowen Research and Training Institute in Tarpon Springs, Florida.
"We had been about to leave for home, but we stayed overnight to get the test done," says Vickie. "We got home on Tuesday, April 26. That Friday she called to say I'd tested positive for Lyme Disease. On a scale of 1-10, I'd tested 7-8. She said, 'I won't say you don't have ALS, but you do have Lyme Disease.'"
Ironically, not long before the Crawfords left for Indiana, a lady at Herbs And More had, with Vickie's permission, given her name to another customer, Cheryl Szozda, who had been diagnosed with progressive bulbar palsy. Cheryl's husband Anthony, who suspected Lyme Disease, had done some research and taken her to their medical doctor for lab work to be sent to Bowen. Vickie didn't realize until later that the lab Anthony had recommended was the same one she'd learned about in Indiana.
Anthony had gotten on the Internet and found George McCullars, a Mobile physician and clinical pathologist who specialized in the treatment of Lyme Disease. After her positive Lyme Disease result, Vickie saw McCullars, who's been treating LD patients for more than 20 years.
Vickie Crawford checks the calendar where she marked the date of her diagnosis of Lyme Disease. (News-Courier/Charlotte Fulton)
She's learned so much since then: that months or even years after a tick bite, neurological complications can occur that include numbness, pain, weakness, paralysis of the facial muscles, a stiff neck; that sometimes complications affect the heart or the joints, rather than the nervous system; that her sensitivity to light, a symptom that had stymied her previous doctors, is an indicator of Lyme Disease; and that LD often is misdiagnosed.
McCullars told the Crawfords that the Centers for Disease Control sent out a recommendation around 1998 that physicians treating patients with MS, ALS, Parkinson's and other motor neuron diseases get their patients tested for Lyme Disease.
Vickie says McCullars speculates it could take up to two years to cure her Lyme Disease. Already though, she is seeing progress. Her weight is up to 94 pounds. There was a time when Vickie choked on water, when she avoided eating or drinking when alone. Although she has difficulty chewing some foods because of muscle weakness, her swallowing has improved to the point that she eats a cucumber a day from their garden. The biggest improvement came just last week, when Vickie realized she could bend her neck, thrusting her head backward and forward a dozen times in a row. She still can't lie on her back and lift her head off the pillow without using her hands, but she's confident that will come soon.
The Crawfords consider that they have a lot to be thankful for. Some Lyme Disease patients with neurological complications lose strength in their legs; some lose cognitive ability. Vickie has had neither problem. And not long ago, she sent a letter to her "Angel in Indiana," thanking her for passing along information that led to a diagnosis and a doctor who understands the disease.
Cheryl Szozda
Although Cheryl Szozda's odyssey wasn't of as long a duration as Vickie's, it has been equally as terrifying.
In August of 2004, she began having trouble articulating her words. Suspecting a mini-stroke, she consulted her family physician. From the first, husband Anthony thought Lyme Disease was the culprit. Cheryl had been bitten by a deer tick at the base of her neck the previous April. She'd had flu-like symptoms, but had not been treated for Lyme. When a Western Blot test came back negative for Lyme, the physician did not believe that LD was the cause of her speech problems.
Cheryl's ordeal was similar to Vickie's. Only the symptoms varied. One of the most pronounced symptoms was sleeplessness. A specialist diagnosed sleep deprivation and prescribed sleeping pills. Another checked her for Alzheimer's and other disorders, then concurred with the first specialist's diagnosis.
"At one point there was talk of ALS," says Anthony, who speaks on his wife's behalf. (Though Cheryl has been diagnosed and is undergoing treatment for Lyme Disease, she has not regained the ability to articulate.) "Cheryl got on the internet to research ALS. She went to a site called ericiswinning.com. ,where she read that 50 percent of the people diagnosed with ALS actually have Lyme Disease. We found out about the test Bowen does. We did an independent test and she tested positive. Then it became a matter of finding someone willing to treat Lyme Disease."
They started out with a Huntsville physician who put her on Doxicycline for 30 days. After two months she was feeling better, but her symptoms continued to worsen. Meanwhile, searching the Internet for support groups, Anthony found one headed by a woman from Mobile who told him about McCullars. In three visits, they've seen improvement in several areas: a slight weight gain, improved sleep, cessation of a tongue tremor, and improvement in Cheryl's facial paralysis.
They continue with supplemental therapies such as nutrition and acupuncture - and prayer.
"Prayer is important," says Anthony, who names a network of relatives whose churches keep Cheryl on their prayer list. On that, the Szozdas and the Crawfords agree.
They also agree on the importance of spreading the word about their newfound knowledge.
"People call, e-mail, ask questions," says Anthony. "We don't want to force-feed anybody this information; we just put it out there and let them take a look at it."
Wednesday, July 20, 2005
Lyme disease tally difficult to monitor
Rhode Island health officials say they can't tell how many new cases there are, and hope to establish an accurate reporting system.BY PETER B. LORD
Journal Environment Writer
The state Department of Health has been having trouble tallying the incidence of Lyme disease cases here so it is about to announce a new surveillance system that it believes will generate more accurate numbers.
"We've had a lot of problems with diagnosis and treatment," said Health Department spokesman Robert Marshall. "We think there are a lot more cases."
Later, Marshall said he wasn't sure if there are more cases than now recorded by the Health Department. "We don't know. You can't compare one reporting system with another."
For years, the Health Department has been publishing very specific data on Lyme disease cases statewide, reporting a total of 2,801 cases in the last five years, ranging from a high of 852 in 2002 to a low of 249 last year.
But Marshall said the state's method of tabulating cases has been beset with problems that make the figures questionable.
Health laboratories are required to send reports of all positive Lyme disease test results to the Health Department, according to Marshall. But he said many lab reports are reconfirmations of earlier cases so the Health Department has to follow up on the reports and try to figure out which are new and which are repeats.
"We have so many being reported to us it's been overwhelming," Marshall said. "We're trying to sort it out and focus just on new cases."
In a single year, he said, the department might get 3,000 positive lab reports, but only 400 or so turn out to be new cases.
Because of delays, lags in reporting data and the time it takes to analyze the lab reports, Marshall said he has no idea whether Lyme disease this year rose along with the increased abundance of deer ticks that spread the disease.
Marshall said the new protocol will have physicians report only the new cases they diagnose. Notices are expected to go out this week. The results, he said, will allow the department to compare year to year going forward, but not backward, because the different protocol will be in use.
Underreporting of Lyme disease is a "huge issue" says Pat Smith, president of the Lyme Disease Association, a national group based in New Jersey. "That's why we have so many patients undiagnosed," Smith said.
The disease doesn't get the attention and funding it deserves, she said, because health officials routinely undercount the number of people who have it.
At the same time, she said, state programs that rely on mandatory laboratory test reporting can skew results in the other direction.
"Connecticut stopped mandatory lab reporting and the number of cases dropped by 80 percent," Smith said. (Connecticut reported 4,431 cases in 2002 and 1,403 in 2003. It attributed the decline to a change in the reporting system.)
Lyme disease in this area is caused by bacteria transmitted by deer ticks, which are much smaller than the common dog tick.
The Centers for Disease Control and Prevention reported 23,763 cases in 49 states in 2002, the worst year ever, but noted "there is considerable underreporting."
The disease poses a significant risk in just 100 counties in 12 states in the Northeast and mid-Atlantic region, the upper North-Central region and in parts of northern California.
The largest proportion of cases was reported among those age 5 to 14 and 50 to 59.
The CDC attributes the increasing number of cases to growing populations of deer, which are hosts to the disease; increased residential development in wooded areas; ticks moving into new areas, and improved recognition and reporting of the disease.
The CDC says it doesn't know the extent of the underreporting of Lyme disease, but cited studies in Connecticut and Maryland that found localities where the disease was 6 to 12 times more prevalent than what was reported.
Last November, Rhode Island Hospital opened its own Lyme clinic from 1 to 5 p.m. Tuesday afternoons. Dr. Jennifer Mitty, the clinic director, said the hospital saw an increasing need for treatment and to provide help to primary care physicians.
"We're busy," Mitty said yesterday. She said the clinic is seeing a lot more acute cases that have "management issues." It also treats chronic cases and patients with more complicated problems.
"One of the things we hope to do is to remind people to think about Lyme when they are diagnosing people," Mitty said. She said at least 20 percent of the people who get Lyme don't have the bull's-eye rash, and some who have the rash just don't see it. The remaining symptoms are much like the flu.
Dr. Nittin Damle, who practices medicine in South County and works with the Lyme disease clinic at South County Hospital, said that when he sees patients in the early stages of the disease with clear symptoms, he sees no need to order blood tests. So those cases wouldn't be counted by the Health Department under its current system.
Tuesday, July 19, 2005
Lyme patients want reporting rules changed
Detroit Free PressThere was a point when Connie Siese, 57, of Wayne could not remember whether the number five was greater than seven. She would just trust cashiers to give her the right amount of change when she went shopping.
PROTECT YOURSELF
To protect yourself from Lyme disease:
•Walk in the middle of trails, away from grass and bushes.
•Wear a long-sleeved shirt, pants and shoes.
•Wear light-colored clothing, so ticks are easier to see.
•Spray tick repellent on clothes and shoes.
•Check for ticks every hour in tick-infested areas.
For more information, visit the Michigan Lyme Disease Association's Web site at www.mlda.org.
"I could not count. I could not recognize money," she said.
It was a symptom of Lyme disease, which Siese got from a tick 12 years ago in the classroom where she worked. The disease showed up on her face with the characteristic bulls-eye rash around her bite, and Siese went on to experience temporary paralysis, pain, exhaustion and memory loss.
These days, with the help of antibiotics, her symptoms have eased and Siese is able to make it through her days by resting and surrounding herself with reminder lists.
Siese and nearly 200 others attended the Michigan Lyme Disease Association's fourth educational event Sunday in Pontiac and called for broader recognition of the disease.
Linda Lobes, association president, said doctors are unfamiliar with Lyme disease and interpret symptoms as psychological problems. Because of the range of symptoms, patients, advocates and doctors say the disease is routinely misdiagnosed, often as multiple sclerosis, and undercounted in Michigan.
Michael Ledtke, 54, a doctor in Saginaw who primarily treats patients with Lyme disease, said he has about 500 active patients.
Ledtke said the disease is undercounted because the state reports only positive lab test results -- not doctors' diagnoses based on symptoms.
"I think that Lyme" disease "is pretty much epidemic in the state," Ledtke said.
The daughter of Oakland County Executive L. Brooks Patterson, Mary Patterson-Warner, got Lyme disease when she was in high school. Patterson, who attended Sunday's event, said health officials need to recognize the disease as a credible public health threat.
State health officials "need to be more accepting of the data that's out there," Patterson said. "It's the front-line doctors whose information should be given more weight."
T.J. Bucholz, spokesman for the Michigan Department of Community Health, said Lyme disease in the state is concentrated in southwest Michigan and the Upper Peninsula. He said health officials are treating Lyme as an emerging disease.
"I'm certain that we follow the CDC guideline in terms of the reporting of the disease," Bucholz said, referring to the federal Centers for Disease Control.
The following is an announcement from ILADS:
What you need to Know about ILADS and Lyme Disease and WhatPsychiatrists Should Know about Lyme Disease are now available in a PDF
file on the ILADS web site (www.ILADS.org). They are in a printable
version so that if you have a color printer, you can print them up
yourself.
http://www.ilads.org/brochures.html
Monday, July 18, 2005
Lyme-disease lookalike baffles CDC
St. Petersburg Times - St. Petersburg,FL,USADr. John Sinnott, an infectious disease expert from Tampa, was vacationing in Key West when a man asked him to take a look at a strange rash.
The man's rash looked like the red "bull's eye" rash found in Lyme disease. But why would a disease most common in the Northeast turn up in a man who hadn't left Key West in months and couldn't remember getting bitten by a tick?
Lyme disease is rare, although not unknown, in Florida. But Sinnott decided the man probably had another disease, one doctors know less about: Southern Tick-Associated Rash Illness, or STARI.
Doctors think that, like Lyme disease, STARI is caused by a bacterium spread by tick bites. It causes a rash and is treated with antibiotics.
The bacterium, Borrelia lonestari , has been found in lone star ticks. It's related to Borrelia burgdorferi , which causes Lyme disease and is found in deer ticks. But they have been unable to grow the bacterium in a lab, aren't positive it causes STARI, and still have many questions about the disease. The federal Centers for Disease Control and Prevention wants to learn more about STARI, and is asking doctors across the Southeast to provide specimens for study.
"I don't think anyone knows how much STARI there is and how much Lyme," said Sinnott, director of the Florida Infectious Disease Institute at the University of South Florida. "We may have more STARI than Lyme."
Anywhere from 15 to 72 cases of Lyme disease have been reported in Florida annually over the decade ending in 2003, according to state health department statistics. But nobody is sure how many cases of STARI there are. Doctors aren't required to report it.
"I believe most things called Lyme disease in Florida are this separate disease," said Dr. N. Lawrence Edwards, vice chairman of the medicine department at the University of Florida College of Medicine. "I have seen Lyme ... but it's almost always in patients who summer in Connecticut or Maryland, and shortly after leaving come down with the symptoms."
That doesn't mean Lyme disease doesn't happen in Florida. Some doctors think the cases reported to the state are only a fraction of the real number. And the disease made the news recently when Florida State University officials said FSU quarterback Wyatt Sexton had been diagnosed with Lyme. That news followed Sexton's hospitalization under the Baker Act after he was found lying in the road, claiming to be God.
Such neurological symptoms as part of Lyme disease are unusual.
"Delusional activity is not something I've seen described," Edwards said, but cautioned that he doesn't know details of Sexton's case.
Lyme can cause cognitive disorders, the CDC says. Two years ago, novelist Amy Tan reported repeatedly hallucinating that a naked man was approaching her bed, as well as memory loss and other cognitive problems before she was diagnosed with Lyme.
Meanwhile, scientists at the federal Centers for Disease Control and Prevention last year started a new study of STARI. They're asking doctors across the Southeast to do skin biopsies of patients with tick bites and rashes that appear to be STARI and send them specimens.
In 2001, doctors found the lonestari bacterium in a skin biopsy of a patient with a STARI rash. The patient, who was treated with antibiotics, had been exposed to ticks in North Carolina and Maryland.
If doctors can isolate more samples of the bacterium from patients with the STARI rash, that would prove a more definite link, said Larissa Minicucci, a CDC epidemiologist in Colorado.
The bacterium "has been isolated from some lone star ticks, but we don't have a good correlation with that and the illness," Minicucci said.
Doctors think STARI doesn't cause the same complications as Lyme, but that's not certain, either.
Lyme disease cases in Florida often exhibit strange symptoms, said Carina Blackmore, the acting state public health veterinarian. Sometimes patients don't seem to have the classic rash. Often they're sick enough to be hospitalized, generally because they're diagnosed late.
"We want to understand Lyme better than we do in this state," Blackmore said. "We know it's here, but for some reason it's not behaving the same way it is in Connecticut and other states, and we don't quite understand why."
STARI might be a piece of the puzzle, she said.
"Maybe that's why we have a hard time diagnosing Lyme - that is it's not Lyme, it's Lyme-like disease," she said.
Lyme patients want reporting rules changed
Detroit Free Press - Detroit,MI,USAThere was a point when Connie Siese, 57, of Wayne could not remember whether the number five was greater than seven. She would just trust cashiers to give her the right amount of change when she went shopping.
"I could not count. I could not recognize money," she said.
It was a symptom of Lyme disease, which Siese got from a tick 12 years ago in the classroom where she worked. The disease showed up on her face with the characteristic bulls-eye rash around her bite, and Siese went on to experience temporary paralysis, pain, exhaustion and memory loss.
These days, with the help of antibiotics, her symptoms have eased and Siese is able to make it through her days by resting and surrounding herself with reminder lists.
Siese and nearly 200 others attended the Michigan Lyme Disease Association's fourth educational event Sunday in Pontiac and called for broader recognition of the disease.
Linda Lobes, association president, said doctors are unfamiliar with Lyme disease and interpret symptoms as psychological problems. Because of the range of symptoms, patients, advocates and doctors say the disease is routinely misdiagnosed, often as multiple sclerosis, and undercounted in Michigan.
Michael Ledtke, 54, a doctor in Saginaw who primarily treats patients with Lyme disease, said he has about 500 active patients.
Ledtke said the disease is undercounted because the state reports only positive lab test results -- not doctors' diagnoses based on symptoms.
"I think that Lyme" disease "is pretty much epidemic in the state," Ledtke said.
The daughter of Oakland County Executive L. Brooks Patterson, Mary Patterson-Warner, got Lyme disease when she was in high school. Patterson, who attended Sunday's event, said health officials need to recognize the disease as a credible public health threat.
State health officials "need to be more accepting of the data that's out there," Patterson said. "It's the front-line doctors whose information should be given more weight."
T.J. Bucholz, spokesman for the Michigan Department of Community Health, said Lyme disease in the state is concentrated in southwest Michigan and the Upper Peninsula. He said health officials are treating Lyme as an emerging disease.
"I'm certain that we follow the CDC guideline in terms of the reporting of the disease," Bucholz said, referring to the federal Centers for Disease Control.
Saturday, July 16, 2005
More Tick Trouble
WQOW-TV - Eau ClaireOne more reason to watch out for ticks: doctors are diagnosing another disease caused by the tiny creatures. There have been two cases in Menomonie in the last two weeks. It's much more serious than Lyme disease but not as common. It's called Ehrlichiosis. Since it was identified 19 years ago there have only been about 1,300 cases in the U.S. "The biggest clues are a person would have often a degree of headaches, sleepiness, confusion," says Dr. Nathan Rich at the Red Cedar Medical Center. Dr. Rich says it's just within the last five years he's started diagnosing Ehrlichiosis. It's a bacteria that kills white blood cells. "The tricky part is Lyme and this are caused by the same tick so you can be infected with one or both," says Rich.
Michael DuPont had never heard of the disease until last week when blood tests confirmed he has it. "Wednesday evening I started having sore muscles, every joint in my body ached," says DuPont. He thought the pains were related to Lyme disease, which he was diagnosed with in April, but the symptoms got worse: a fever, chills, bad headaches. "In all honesty I thought Friday was probably my worst day," says DuPont. "It just totally put me out."
Doctors say Ehrlichiosis doesn't cause a bullseye rash like Lyme disease. That's why it's often mistaken for the flu. "The infection itself causes an impressive degree of confusion for the person," says Rich. "They just aren't thinking straight, aren't talking right." Now that Michael knows what he's dealing with, he's on antibiotics. And he's watching out for ticks. "Everyone thinks Lyme disease, Lyme disease, Lyme disease, but it doesn't mean that it's Lyme disease," says DuPont
One reason more folks are being diagnosed with Ehrlichiosis is because doctors are now testing for it. They say if it goes untreated, it could be fatal. Prevention tips are the same as with Lyme disease: wear long pants and sleeves in wooded areas and bug repellant with Deet. This disease is also a concern for pets. Michael DuPont says his neighbor's dog died four days after a tick was pulled off.
Friday, July 15, 2005
Lyme disease Debilitating effects, difficulty of diagnosis detailed at hearing
Harvard Hillside - Harvard,MA,USAAREA -- State Rep. Peter Koutoujian and the Joint Committee on Public Health held a public hearing on Lyme disease to gather testimony on a disease that infected roughly 1,500 Massachusetts residents last year alone.
The hearing was held at Nashoba Valley Medical Center.
"We are well into the Lyme disease season," said Koutoujian, D-Waltham. "Outdoor activity is extremely high this time of year, making much of the public susceptible to becoming infected."
The panel included Patricia Smith, president of the New Jersey Lyme Disease Association; John Coughlan, director of the Lyme Disease Coalition; Heather Marceau, member of the Acton Board of Health; Koutoujian; state Rep. Jennifer Flanagan, D-Leominster; Maureen O'Brien, registered nurse; Dr. Sheila Statlender, a registered psychologist and a member of the Lyme Disease Association of Massachusetts; and state Sen. Pamela Resor, D-Acton.
Lyme disease is caused by bacteria that are spread by infected ticks, in the commonwelath it's the deer tick.
In Massachusetts, deer ticks are found everywhere, and the most prevalent time for infection is between late May and early autumn, which is when ticks are most active. Deer ticks cling to plants near the ground in brushy, wooded or grassy areas. The ticks, which cannot jump or fly, climb onto animals and people who brush against the plants.
One group of women came up from the Cape Cod support group of Lyme disease sufferers.
Jacquelyn Nesbitt, Karen Hullett-LaRoche, Sharon Mendes and Susan Soares all have first-hand knowledge of how debilitating the disease can be.
Nesbitt has chronic Lyme disease and spent two years bedridden from the effects. "I am in extreme pain every day," she said. She had been misdiagnosed for five years before a doctor found she suffered from Lyme disease.
Hullett-LaRoche has had the disease since she was approximately 10 years old.
"The doctors never could find what was wrong with me," she said. "They sent me to various other specialists, even psychiatrists. They thought since I had no rashes, which is a symptom of Lyme, that it was fibromyalgia."
"Another doctor told me that I could not even meet my husband's needs, and maybe we should look at getting a divorce, so he could get on with his life," she added.
She said she was near death by the time of her diagnosis. "I went into complete physical and mental collapse," she said. "I always feel like I am swimming upstream, that is how bad the tired gets."
"One thing Lyme does is it can make you forget how to do ordinary things, like walk up or down stairs," she continued. "I've been living like this almost my whole life."
Other difficulties she encountered included not remembering how to write a check.
"I was totally bedridden for eight weeks," she said.
Hullett-LaRoche said she is now on total disability from the state because she can't function.
She passed the disease on to her now grown children through the umbilical cord, she said.
Mendes has had Lyme for 25 years, and is now in an advanced chronic stage. "I was diagnosed three years ago," she said. "My husband has a mild case now as well."
She said one symptom is panic attacks. "You feel like you are going crazy," she said. "All of your coping skills leave you, and it is like you have to learn to live all over again."
Mendes told the panel she was always "an overachiever as a child, and was never a hypochondriac."
"It is very scary when you are ill -- physically and emotionally -- and no one knows why," she said. "Today, I cannot even drive a car."
Soares, who is the designated driver for the group, said her 20-year-old son has Lyme. "He was misdiagnosed for years," she said. "He was so bad that during this past school year, he had to spend two entire weeks in bed, could not even attend his classes."
Lyme disease affects children a little differently than it does adults, according to Mendes. "Many children are misdiagnosed with Attention Deficit Disorder when in reality, they are suffering from Lyme disease," she said.
Koutoujian said to date there are 244 confirmed cases of Lyme disease in Middlesex County, which is a 94 percent increase since 2000. He also said Massachusetts is three times higher in confirmed numbers since 2003.
"Unfortunately there is no vaccine available for this," he said. "Lyme disease is more problematic than we thought, and people around us are being infected every day."
Smith said people who are in grassy areas should check themselves every day.
"Look between your toes, in your groin and on your hairline," she said. She explained the rash looks like a bull's eye.
"In New Jersey, we have finally adopted a state curriculum from Lyme disease in the schools," she added.
William Alton, of Pepperell, spoke to the committee on behalf of himself and his wife, who also suffers from Lyme.
"We have both seen various specialists," he said. "My wife can no longer even speak from the disease. We have both heard from so many other people that have Lyme disease in our area."
Alton said he and his wife have searched for a specialist in the field of Lyme disease, and that they are considering to go out of state.
"One thing we have discovered is total ignorance by doctors on Lyme," he said. "I went on the Internet and found only two Massachusetts doctors that are specialists in the disease."
He said his wife also suffers from breast cancer, which makes the Lyme that much more difficult to deal with.
In the early stages of Lyme disease it can be treated with antibiotics. However, if left untreated, it can spread to the three major organs, the joints, the nervous system and the heart can all be affected. It can be fairly easy to diagnose when the classic rash is a symptom, however most who testified said they did not have a rash.
Koutoujian said all information compiled will be used to get more information out to physicians.
"This hearing will serve as a valuable tool in helping us better understand Lyme disease," he said.
Unrecognized epidemic creates serious problems for many
Gazette.NetIt is hardly ever talked about, and most who have the disease don't even realize it, even if they have been tested. Lyme Disease is a major medical problem in the US, according to the Lyme Disease Association of Pennsylvania.
The problem with Lyme Disease is that the testing for it is not very reliable. Many will have the test done and it will come back negative. Doctors will then treat the patient for something else, and the problems will only get consistently worse.
Fortunately for Carrie Ortiz of Mount Airy, her test had come back positive when she was tested. She was treated with antibiotics for several weeks. More testing was done, and the unreliability of the testing was showing.
"My tests were coming back with some positive and some negative," said Ortiz.
Ortiz was diagnosed about five years ago, and has actually had symptoms for about six years now.
"A negative blood test does not completely exclude the disease," said Dr. Nathan Wei, a rheumatologist in Frederick. "And a positive test alone does not confirm the disease."
According to Johns Hopkins University Arthritis Center, Lyme Disease is a bacterial infection usually contracted from a tick bite. The symptoms are very similar to the flu and if untreated can cause severe damage or even death.
The most common symptom is a bull's eye rash that will develop around the initial spot of the bite.
Sometimes symptoms will show up right away, sometimes they will begin slowly and other times they will take weeks to show up. One sign that should be taken with precaution is flu-like symptoms in any season besides winter.
Ellie Bonde of Mount Airy had noticed a bull's eye mark across her shoulder and after 48 hours the mark was gone completely. Fortunately she went to the doctor the same day she noticed it. The mark was so obvious, no testing was done, and it was verified by both a dermatologist and doctor that she had Lyme Disease. She was immediately put on 100 milligrams of Doxycycline twice a day for three weeks.
"I was really lucky to have it in a place where I could see it," said Bonde of her bull's eye.
Bonde keeps a chart of all symptoms she is developing to give to her doctor. This is recommended by Johns Hopkins for people who are experiencing similar symptoms.
An infected deer tick must be attached for 24 for 48 hours before it can transmit Lyme Disease, according to Dr. Wei.
The problem with testing is not all doctors are as knowledgeable as they need to be to treat the disease. According to Dr. Wei, Lyme Disease is a form of arthritis because it affects the joints and muscles. The symptoms of Lyme are very similar to those of rheumatoid arthritis.
"Lyme Disease is one of over 100 different types of arthritis," said Dr. Wei.
One Lyme patient, who has asked not to be named, was treated for rheumatoid arthritis for about 10 years before it was proven that he was actually suffering from Lyme Disease. The body and muscles aches along with the fatigue he was suffering are some of the same beginning signs of rheumatoid.
Along with the disease, other diseases referred to as "co-infections" can be carried with it. Some of the common co-infections are Ehrlichiosis, Babesiosis, Bartonella, and Rocky Mountain Spotted Fever.
The patient who has asked not to be named is also suffering from Babesiosis along with the disease.
His treatment for his infections is a little different than the treatment Ortiz is receiving. He has what is referred to as a pick-line in his arm. It runs to his chest to send the antibiotics through his body. The worst part is that the tube must stay in all the time because his testing is done five times a week and it is impossible to keep taking the tube in and out.
When Ortiz was diagnosed, she had trouble finding a doctor in the Maryland area that was knowledgeable enough to treat her correctly. Both she and her husband have the disease. Together, they make a 12-hour round trip to Hermitage, Pa., where they receive treatment once a month. They are coming up on their 14th month of treatment. Although they are doing much better than they were last year, they both still have symptoms.
"The bacteria changes shape to hide from the antibiotics," said Ortiz. This makes it hard for it to be treated because the antibiotics won't recognize the disease and won't be able to fight it.
Although there are more doctors in the area now who specialize in the disease, Ortiz pays for all of her treatment out of pocket because insurance doesn't cover all the procedures and testing that need to be done. It would cost them more than $1,000 to be re-tested by a new doctor in the area and it would have to be out of pocket.
The problem with many doctors who aren't specialized in the field is that "they try to follow the Center for Disease Control (CDC) guidelines and won't think out of the box," said Ortiz.
"The disease is not recognized as the epidemic it is," added Ortiz.
"Since Lyme Disease may look like many other types of arthritis, the diagnosis is not always an easy one to make," Dr. Wei said. "Over-diagnosis is probably more common than under diagnosis."
Ortiz and her husband have developed a support group in Mount Airy at the Mt. Airy Bible Church. They meet on Friday, sometimes Saturday depending on the calendar, once a month.
It is a place for people to come and just talk to each other and know that they aren't the only ones out there feeling this way.
"With the way we were feeling, we figured people needed support," said Ortiz.
Some visitors to the group may not have the disease, but know someone with it or have information on it to share with those at the meetings.
The important matter for people to realize is that many are walking around with Lyme Disease and not getting properly treated because their doctor may not use a reliable test. The best test to use to find an answer is the Western Blot Test, which is recommended by Johns Hopkins. It is important to find a lab that makes a special effort to focus their testing on tick-borne diseases and have the procedures available to make the tests more reliable.
If a tick is found, it is possible to save the tick in either a plastic bag or a bottle and take it along to the doctors, according to the Lyme Disease Association of Pennsylvania. There is testing that can be done for a price, but it is a precaution that may be worth the money.