Study: Lyme disease prevalent JILL NAWROCKI, Staff Writer 07/18/2004 POCOPSON -- Numbers from a recently released mail-in survey estimate some 46 percent of responding township residents have experienced one or more cases of Lyme disease in their home.
Admittedly unscientific, representatives of the surveying organization, the Lyme Disease Association of Southern Pennsylvania, said the purpose was only to show evidence of a problem, hopefully resulting in further funding for a more accurate future survey.
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The volunteer organization mailed out pre-paid return cards to all 848 households in Pocopson. Vice President Doug Fearn said 301 cards were returned to the association, just more than 35 percent of the total population.
"Statistically, it's not a real solid survey because people could choose whether or not they wanted to respond," Fearn said. "But we had a pretty good return."
Association President Harvey Kliman said the group chose to survey Pocopson because of both its size and location. It believes the township adequately represented the general area and was a perfect size for its level of manpower and amount of funding.
Were it any other disease, Kliman said, it might be called an epidemic because of the high level of incidents in not only Pocopson, but also in the county. He said he hoped the newly released numbers will generate awareness of the devastating problem and lead to a larger and more accurate study of the issue.
"We'd like to look at this region, but the size and the area we cover is dependent on the funding," he said. "A general cost estimate would be anywhere from $25,000 to $30,000 for a bigger survey."
Typical symptoms of the disease are similar to the flu: feelings of extreme fatigue, drowsiness and sensitivity to light and sound. A "bull's-eye" rash appears in less than half of all cases, usually within a month of the initial bite by an infected tick.
Fearn, who has the disease, said it was possible some residents were mistaking the symptoms of Lyme disease with those of the flu, resulting in higher incident numbers on the survey.
Betsy Walls, director of personal health at the Chester County Health Department, did not have exact information for local incidents of the disease, but said she was certain there was a lot of it in the county.
"I know that being in a rural area that had a lot of wildlife at one point, there will be a big tick population," she said. "But not all ticks have Lyme disease. Not all cases fit the mold, but that does not mean a patient wasn't treated for the disease."
According to Walls, physicians are required to enter any case they believe could be Lyme disease into an electronic state data system, where statistical information is then filtered into a national log.
Fearn, who has lived with the disease for more than six years, said doctors generally treat patients with a series of antibiotics for a period of months, even years. While initial symptoms frequently mimic the flu, if left untreated, issues may escalate to more serious symptoms.
"If it's inadequately treated, more neurological symptoms can occur," Fearn said. "Sometimes there's burning or tingling in the feet and hands, other times profound fatigue."
Fearn, first diagnosed with the disease in 1994, said he was treated with a series of antibiotics, but after a month of improvements, he still felt uncertain whether he was truly over the disease. Although symptoms from his initial bite subsided, Fearn said after several more bites, fatigue and pain came back in full force. In 1999, he was treated with oral antibiotics, followed by six weeks of intravenous medication. Then he was treated later with two years of antibiotic shots, twice each week.
"It's making progress, but it's still not gone overall," he said.
Dr. Peter Fabulian has been treating Lyme disease patients at his Kennett Square practice for six years and said the problem is bigger than most people believe. According to his data, Chester County has the third- most cases of recorded Lyme disease in the country. The top two, he said, are in Connecticut, where the disease was initially discovered.
"I see at least 200 Lyme patients a month here, probably 15 new patients a week," he said. "This diagnosis is the most-missed diagnosis at this point because it mimics so many other diseases. It's not a blood test because it doesn't show up in all blood tests. It changes over time."
Dr. Ann Corson, who has a practice in Kennett Township that treats only patients with tick-borne diseases, agreed with Fabulian and said the problem is larger than everyone originally anticipated.
Over the past year she said her clientele has skyrocketed to roughly 400 patients, so many, she said, that she had to shut her doors to new clients until at least September.
Corson said she believes the disease has become more prevalent in the past few years. Many of the people who come into her office have been previously misdiagnosed by other physicians who misjudged the flu-like symptoms.
"I find people who have been mistreated for years, some people who have had Lyme disease for 20 or 30 years before they come to my office," she said.
Both Corson and Fabulian agree that risk is not limited to rural parts of the county. Corson said the problem is increasing in the suburbs as well. Because increased development has removed predators for animals that carry ticks, Corson said anyone with mice or deer in their yard or surrounding area could be at risk.
"If we get rid of the ticks, we can get back to enjoying our land, back to enjoying the outdoors," said Corson.
[ 21. December 2006, 07:32 PM: Message edited by: stymielymie ]
Posted by stymielymie (Member # 10044) on :
Posted by Robin123 (Member # 9197) on :
Amazing that people are coming in 20, 30 years not knowing it, in an area that has this. Here we're coming in 20, 30 years not knowing in an area that doesn't know it has this...
If Dr Corson has this many patients, more doctors need to be involved...
Posted by tothepoorhouse (Member # 8595) on :
I live right outside Chester County. I may send this to the GP that told me for 14 years that I had chronic fatigue. Posted by tory2457 (Member # 10384) on :
Oh my...I did want remain in denial! as I swallow another Minocycline/Fluconazole and recover from my 4 week herx!!
I lived in Chester County when I had my first symptom(s). I unfortunately was tested and treated for MS...the word lyme never crossed anyone's lips. It was the dark ages back then in 1987!
And I wonder why I seem to want to tell the world to just order antibiotics.... take them and let me know how you feel after 6 weeks!!... get tested? Why? just take antibiotics
just kidding -
holiday humor and this after reading the Reader Comments about the care of a dog over a human! ughhhhh
Thanks for posting this stymielymie...so much has changed since 2004!
Posted by trails (Member # 1620) on :
my first infection with lyme was in chester county. Thank god i got multiple EM rashes and my bloodwork eventually cooperated. But I was undertreated with only 2 weeks of tetracycline by the duck.
Posted by tothepoorhouse (Member # 8595) on :
The answer is not to get rid of the deer......we know that lyme is passed to humans ticks on wild birds, our pets, mice, moles, mosquitos, groundhogs, rats, geese, bluebirds, or through the Red Cross blood bank, etc.
The one problem I have found with this article is the end statement.........we will never get rid of ticks! They survive in nature no matter what we do to our natural fauna and gardens.
Medicine has to find a cure/vaccine b/c it's like saying we have to get rid of ants and the problem will go away. It's a stupid statement!
God bless us everyone.......... Posted by stymielymie (Member # 10044) on :
up
Posted by brothers6 (Member # 8922) on :
I live on the edge of Chester Co,I live in Delaware Co., PA. It's been known for years that there has been many cases in southeastern PA. I've learned your basic PCP and other specialists just flat out won't believe you.
I've tried for nineteen years to get just one dr. to believe my story. My blood work always came back neg. Although I've only had it checked about 4x in 19 yrs. I was bitten, I had all the early symptoms but it was 1987. In 1989 I BEGGED my PCP to please give me tetracycline. That was the antibiotic of choice at the time. That was the only treatment I've received, ever.
But there is a big problem here in southeastern PA. Although there are LLMD's most of them don't take medical insurance. I won't name names, but it's very prevelant. One doctors' office quoted me $700 for the first visit and $2000 for the first blood tests.
So not only is it hard to find a LLMD. It's very hard to find one that can work within the perimeters of an HMO, PPO or traditional medical insurance. I pay a lot of money for my medical insurance. I am only going to a dr. that takes it. I have no other recourse. Who can afford prices like that? Do they think only rich people get Lyme?
I know that it is difficult for a doctor to treat Lyme patients and maintain relationship with the patients medical insurance company. Every insurance co. has established their own treatment protocol. Both doctors and patients have to work within their perameters, or they are screwed. Message to the drs.; work with the insurance companies or lower your prices. You are supposed to be in the business of healing.
Posted by Robin123 (Member # 9197) on :
brothers, we have a current post going on llmds not taking insurance, if you want to add any comments there
Posted by Robin123 (Member # 9197) on :
This issue of doctors just flat-out not believing in this plague, this must be politics. It doesn't take a rocket scientist to figure out there's a plague problem.
Posted by stymielymie (Member # 10044) on :
robin you can't post on my posts without a song.
how about a plague song. maybe from oliver twist era, lots of plaques back then, chollera, black , yellow fever, syphilus.
Posted by Andie333 (Member # 7370) on :
I live adjacent to Chester County. I had symptoms which all pointed to Lyme (or would, to someone who knows about about the disease).
Instead of being tested for Lyme, my then-GP sent me from one specialist to another -- 13 in all, over a period of 2 years.
In all that time, the disease was continuing to wreak havoc on my system, and by the time I was finally tested (at the suggestion of my acupuncturist), I was so sick I could barely function.
You honestly can't raise the conversation of Lyme with anyone in this area without that person knowing at least one person who's been infected --usually more than one.
Andie
Posted by stymielymie (Member # 10044) on :
i got my lyme in a little park in media,pa. it is one of those sites that somebody deeds for open land forever. they had a meadow there about 3 feet high, iwth a path thru it.
i thought it would be nice,and 14 years ago lyme was a "rare" disease as it is "rare" today also.
i removed at least 50 ticks from my 2 dogs and 5-10 from my wife and myself.
stupid me didn't check my head. stupid me where was my head when i went there.
we actually called the adminstrator and told them about the problem.
they said" we don't have ticks here"""
so i spent years trying to figure out all my symptoms, but they never showed their head at once. it was one sysmptom at a time.
the death of my father, and the stress and depression, triggered the lyme full blown.
i had rotating joint pain, diagnostic of lyme. went to rheumatologist and said it was arthritis starting.
we had the internet back then, so i looked up the symptoms prior to going in the office.
I KNEW THE DIAGNOSIS BEFORE GOING INTO THE OFFICE.
i made him run elisa ,wb, and all tests related to autoimmune. 2 days later, he calls me directly, come in immediately. went in elisa was 5.8, wb ALL BANDS positive EXCEPT 1 he was shaking when he saw me.put me on doxy 100mg per day for 10 days. sent me to an id and he said i needed no further treatment. he also said i probably DID NOT HAVE LYME SINCE IT WAS RARE IN DELAWARE AND CHESTER COUNTIES. IT TOOK ME 15 DOCTORS AND 1 NEUROLOGIST BEFORE I COULD GET IV ABX. THIS WAS WITH EXTREMELY POSTIVE TEST RESULTS AND ALL SYMPTOMS.
DOCDAVE
Posted by tothepoorhouse (Member # 8595) on :
I'm just amazed at how many of the folks on here are actually my neighbors in PA!!!
It's nice to see you all, though not under these circumstances. Posted by iceskater (Member # 8655) on :
Poor house: Count me in as one of your former neighbors. I lived in Western Delaware County on the edge of Chester county. Literally, cross the line in the middle of the road in front of my apartment and you are in Chester County. Amazing, how many people here are from that neck of the woods here. I now live with family in Delaware since I have been disabled from the lyme.
Posted by stymielymie (Member # 10044) on :
skater/ poorhouse: did you read the article. this town is off route 1 right past Loogwood Gardens.
they had a 45% response rate to persons having lyme in that township. that's 50% HALF THE PEOPLE THAT ANSWERED HAD AT LEAST ONE PERSON WITH LYME, THIS DID NOT INCLUDE MULTIPLE PERSONS IN THE SAME HOUSEHOLD. SO IF ALL ANSWERED AND ANSWERED NO IT WOULD STILL BE 25% OR 1 IN 4 PEOPLE WITH LYME.
THAT IS A STAGGERING STATISTIC.
THERE IS NO WONDERING WHY CHESTER, DELAWARE AND BUCKS COUNTY AMOUNT TO MANY OF THE PEOPLE ON THIS SITE.
IT IS THE MOST ENDEMIC AREA FOR LYME DISEASE IN THE COUNTRY. AND MAYBE 4-8 LLMDS TO TREAT ALL THESE PATIENTS. AND HALF OF THEM NO GOOD.
ever take a stroll or car ride thru valley forge park at dusk. i worked in phoenixvile for a while and had to drive thru ever night at dusk.
amazing site to see, thousands upon thousands of deer along the horizon, in fields, in the street
you had to drive 10 miles an hour thru the park to keep from hitting dear.
so my friends next time they want to have a deer hunt in your area, please let them thin out the population.
bambi's dead, now lets get rid of some of its relatives. overpopulation of deer is a major problem in this country,and nobody will stand up and say yes we need to thin out the population. the preditors for deer are gone, food is scarce.
the meat can be cooked and given to the homeless waste not want not.
so hi fellow philly counties
docdave Posted by tothepoorhouse (Member # 8595) on :
Of course I know Valley Forge Park! I used to live just a few miles away. Didn't get bit there though as I didn't walk.
I actually had a tick fall out of a tree on my head as I was walking outside my house many years ago.
I remember finding it on my head a few hours after as I was then driving with my husband. He took it out of my hair but it already had bitten me.
quote:Originally posted by tothepoorhouse: The answer is not to get rid of the deer......we know that lyme is passed to humans ticks on wild birds, our pets, mice, moles, mosquitos, groundhogs, rats, geese, bluebirds, or through the Red Cross blood bank, etc.
The one problem I have found with this article is the end statement.........we will never get rid of ticks! They survive in nature no matter what we do to our natural fauna and gardens.
Hey DocDave.....you know I love you but did you see my prior post? Forget about them blaming the deer.
They would have to kill all of the birds, the groundhogs, the mice, the possums, the rabbits, cats and dogs.
They just originally called them deer ticks, but it's all of nature that are tick carriers. Oh, and we'd have to cull the grass herd too. That's how the ticks latch on to living creatures.
Medicine has to find a cure/vaccine b/c it's like saying we have to get rid of ants and the problem will go away.
God bless us everyone..........
Posted by tothepoorhouse (Member # 8595) on :
Oh, and add Berks County, PA to the epidemic list. Every day either my husband or I hear of someone else in our community with lyme and other tickborne diseases. Posted by stymielymie (Member # 10044) on :
sorry i don't like deer. they spread disease also. rabies, ecoli,trichy and especially hantavirus
they need to put ferral cats in the parks to keep down the mice population also. neutered of course.
we have ferral cats in my gated community and the manager wanted to have them all killed. a group of us said we needed them to keep down the mice and rat population
it works, lots of water but not mice, racoons yes, alligators oh my , but no mice or rats.
of course i know the cycle of lyme. its like the circle of death, right.
docdave Posted by Robin123 (Member # 9197) on :
Interesting thread, this one.
Stymie, re your comment I have to write a plague song, I believe this ditty is a plague song:
Ring around the rosie Pocket full of posies Ashes, ashes We all fall down.
I think it was written about the black plague.
Rewritten:
Ring around the tick bite(sometimes) Sock it full of sick fight Cashless, cashless We all go down.
Posted by mlkeen (Member # 1260) on :
Yes, the ticks don't stop at the county or state line. Cecil and Harford counties in MD are ticks havens too.
It has long been the joke a round here the R 896 is the tick highway. Why, then you plop 5 acre wooded lots in the middle of once farm or rural land the deer are still there with a house to walk around every 4.5 acres.
I'm in the western part of the county near the railroad with its wide wooded areas on either side of the tracks. I used to walk the dog for long distances on this ground but stopped because I was finding "too many" ticks and deer dropping. I was too late. We had been infected.
I don't leave pathed areas, except in my yard any more.
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