Symptom mix may or may not point to Lyme disease

[Guest guest]

I thought this might be of interest to many of you. kathy

Depending on your ISP and your Internet browser, you MAY receive an attachment with this email. I am using HTML ( " rich text " ) formatting to display Lyme disease ribbons at the left of this email. If you are also using Outlook Express 5, you will see the ribbons as I have designed them for this particular stationary. If you are using AOL, or another browser, the ribbon GIF will probably not be displayed in your email. Instead it will show up as an attachment. You do NOT have to open this attachment. You are not missing any important information. If you want to open the attachment, I can assure you it is virus free on this end. Please take note that I may use this stationary for the entire month of May, Lyme Disease Awareness Month. If you wish to copy this ribbon and use it in any way to promote Lyme disease awareness, then please do so!

-Robynn

http://www.usatoday.com/news/healthscience/health/2001-05-31-lyme-symptoms.htm

05/31/2001

Symptom mix may or may not point to Lyme disease

By Anita Manning, USA TODAY

Two years ago, Lori Levesque of Embreeville, Pa., was suffering from an array of seemingly unrelated symptoms that baffled her doctors: pain on her right side, weakness, hair loss, blurred vision and chest pain.

" I had about eight specialists looking at me and had gone through three different family practices in the area, " she says. " I had CT scans, ultrasounds, X-rays — and nothing was being found. "

Worst of all, her children, , 12, Cara, 10, and Ailee, 7, started showing symptoms. " would come home from school and sit on the bed and stare. Cara would sit on the floor and say, 'I don't feel good.' My baby was a temper tantrum waiting to happen. We were all becoming so ill. "

A friend suggested they might be suffering from Lyme disease, a tick-borne illness that is common in rural Pennsylvania where the Levesques operate a campground. But, Levesque says, she had been tested three times for Lyme disease, and all were negative.

Her illness progressed. One day, as she walked from her home to the campground, " I turned into a farm area and basically had a breakdown. I didn't know where I was or how to get home. "

Her alarmed husband, , sought out yet another doctor, who listened to her litany of ills and " after a 20-minute conversation, he said, 'Mrs. Levesque, you have Lyme disease.'

" He came back with a paper and read a list of symptoms. I had 90% of them, " she says. " No one ever put it together that they were all part of a systemic illness. "

Lyme disease is caused by a corkscrew-shaped bacterium called a spirochete, which is transmitted by the bite of tiny deer ticks or, on the West Coast, by the western black-legged tick. The ticks feed mainly on white-footed mice and white-tailed deer, along with birds and other mammals. As the deer population has grown and expanded its range, the range of Lyme disease has also expanded, though the risk still is highest in the Northeast and Upper Midwest.

It was first identified in Lyme, Conn., in the mid-1970s in children who were suffering arthritis — one of the most common symptoms — and has since become the most commonly reported tick-borne disease in the USA, according to the Centers for Disease Control and Prevention. The true incidence is probably much higher, scientists say, because in some parts of the country doctors see so many cases that they often don't bother to report them to the CDC. The Lyme disease season begins in late May, when the ticks are in the nymphal stage. Nymphs account for nearly 90% of infections, although adult ticks also transmit the disease. Adult ticks are active from October through June in warmer areas.

Making matters worse, says pediatrician Krause of the University of Connecticut School of Medicine, is that some patients have more than one tick-borne infection. In one study, he says, about 10% of patients with Lyme disease also had babesiosis, a parasitic disease of the red blood cells, and the same may be true for ehrlichiosis, a disease discovered in 1987 caused by a bacterial parasite of white blood cells. Both are carried by the deer tick.

Yale University researcher Durland Fish recently discovered yet another organism carried by the deer tick, a bacterium similar to the one that causes Lyme, but it's not yet clear whether it causes illness.

Levesque was diagnosed not only with Lyme disease but with ehrlichiosis and babesiosis. She also had human parvovirus, a common childhood infection.

The children were tested and found also to be infected with Lyme, babesiosis and ehrlichiosis. also had Rocky Mountain spotted fever, a disease transmitted by dog ticks. Then, husband had a cardiogram that showed he needed a pacemaker to regulate his heartbeat. His blood tests turned out to be positive for Lyme, ehrlichiosis and babesiosis. " He had no other symptoms, " says his wife. " He probably would never have been diagnosed. He just would have had a heart attack. "

Today, after months of antibiotic treatment, all are recovering, she says.

Diagnosing Lyme disease can be tricky, scientists say. The ticks are very small, about the size of a poppy seed in the nymphal stage, and can latch on, feed and fall off without detection. Once infected, many people develop a characteristic bull's-eye rash that is a sure sign of Lyme disease, but often there is no rash, or it erupts on the scalp or elsewhere out of sight. In such cases, the illness can go undetected only to emerge months, even years, later.

Doctors usually make diagnoses based on symptoms and a history of exposure to ticks, followed up by blood tests to detect an immune system response. But the tests are not always reliable, sometimes producing false-negatives, especially early in the infection before the immune response develops.

The wide range of symptoms also can lead to misdiagnoses, says Pat , president of the Lyme Disease Association (www.lymenet.org). In some people, she says, the infection can manifest itself only in brain and central nervous system impairments, ranging from memory disturbance to seizures. Depression, bipolar disorder and tremors are other symptoms, she says, along with disturbances in thought processes. " People call it Lyme fog, " she says.

In such cases, says , only a " very competent Lyme-literate physician " is likely to pinpoint Lyme disease as a cause. The Lyme Disease Association is working with Columbia University to open an endowed research center for study of Lyme and other tick-borne diseases, she says. The association is also part of a coalition of Lyme disease groups backing legislation introduced in March by U.S. Rep. , R-N.J., that would provide $125 million for Lyme research and physician education. A report from the General Accounting Office assessing Lyme disease research and funding is expected to be completed soon.

Levesque says more research is needed to investigate connections between Lyme disease and other ailments. " In my community, we have people with lupus, multiple sclerosis, Guillain-Barre syndrome, " she says. " They're getting tested for Lyme and coming up positive. Why not look at the possibility these organisms could be the cause of those diseases? "

Dennis, a Lyme expert at the CDC's laboratory in Fort , Colo., agrees with the need for more research. Without clinical evidence, he warns, some patients may latch onto a Lyme disease diagnosis out of a need for an explanation for what is causing them discomfort, not because there's good evidence of infection. " If we leave it open that Lyme disease can cause anything, " he says, " we give these people false hope and we divert our normal diagnostic pathways, so we may miss another (disease) that can be treated and cured. "

While questions remain about Lyme disease, Dennis says, a great deal has been learned about it.

" We've been studying this disease long enough under controlled conditions that we know it has a very wide range of manifestations, but we can logically categorize these symptoms of disease based on the stage of infection, " he says. " If we blow it out and say this disease can cause anything without actual clinical studies, we're straying off into never-never land. "

© Copyright 2001 USA TODAY-------------------------------------------------

[Guest guest]

I was tested for Lyme over a year ago and it came back negative but the doctor felt like I had it so I was on two antibiotics for about three months. I have heard that you have to be on them longer than that though but I started up with the stomach problems and could not take them anymore.

We did have some people in our church in AR that had it also. It was around the area but because I did not have the red mark around the bite that did not go away for a year the doctor could not be sure. One day when at her office I showed her the red streak that went up my leg from it that was when she gave me the other antibiotic.

Though I was ill about three years before this happen and was on the AP for about three or four months at the time. Anyway I will read up on the other one you sent and see if it fits with some of the new stuff that is going on but I think maybe the Lyme was not treated enough and maybe that is still the problem other than the arthritis stuff that now is not diagnosed because everything comes back negative now!! Though it seems that is happening with a lot of people.

I go to the neurologist on the 19th so I will see what he has to say about all of this. I am just not sure he is the right doctor and I am so tired of this, the search for a name to put to feeling like crap! Maybe I could just make up my own name!

Thanks everyone for the information!!

Peace,

Sherry

I thought this might be of interest to many of you. kathy

Depending on your ISP and your Internet browser, you MAY receive an attachment with this email. I am using HTML ("rich text") formatting to display Lyme disease ribbons at the left of this email. If you are also using Outlook Express 5, you will see the ribbons as I have designed them for this particular stationary. If you are using AOL, or another browser, the ribbon GIF will probably not be displayed in your email. Instead it will show up as an attachment. You do NOT have to open this attachment. You are not missing any important information. If you want to open the attachment, I can assure you it is virus free on this end. Please take note that I may use this stationary for the entire month of May, Lyme Disease Awareness Month. If you wish to copy this ribbon and use it in any way to promote Lyme disease awareness, then please do so!

-Robynn

http://www.usatoday.com/news/healthscience/health/2001-05-31-lyme-symptoms.htm

05/31/2001

Symptom mix may or may not point to Lyme disease

By Anita Manning, USA TODAY

Two years ago, Lori Levesque of Embreeville, Pa., was suffering from an array of seemingly unrelated symptoms that baffled her doctors: pain on her right side, weakness, hair loss, blurred vision and chest pain.

"I had about eight specialists looking at me and had gone through three different family practices in the area," she says. "I had CT scans, ultrasounds, X-rays — and nothing was being found."

Worst of all, her children, , 12, Cara, 10, and Ailee, 7, started showing symptoms. " would come home from school and sit on the bed and stare. Cara would sit on the floor and say, 'I don't feel good.' My baby was a temper tantrum waiting to happen. We were all becoming so ill."

A friend suggested they might be suffering from Lyme disease, a tick-borne illness that is common in rural Pennsylvania where the Levesques operate a campground. But, Levesque says, she had been tested three times for Lyme disease, and all were negative.

Her illness progressed. One day, as she walked from her home to the campground, "I turned into a farm area and basically had a breakdown. I didn't know where I was or how to get home."

Her alarmed husband, , sought out yet another doctor, who listened to her litany of ills and "after a 20-minute conversation, he said, 'Mrs. Levesque, you have Lyme disease.'

"He came back with a paper and read a list of symptoms. I had 90% of them," she says. "No one ever put it together that they were all part of a systemic illness."

Lyme disease is caused by a corkscrew-shaped bacterium called a spirochete, which is transmitted by the bite of tiny deer ticks or, on the West Coast, by the western black-legged tick. The ticks feed mainly on white-footed mice and white-tailed deer, along with birds and other mammals. As the deer population has grown and expanded its range, the range of Lyme disease has also expanded, though the risk still is highest in the Northeast and Upper Midwest.

It was first identified in Lyme, Conn., in the mid-1970s in children who were suffering arthritis — one of the most common symptoms — and has since become the most commonly reported tick-borne disease in the USA, according to the Centers for Disease Control and Prevention. The true incidence is probably much higher, scientists say, because in some parts of the country doctors see so many cases that they often don't bother to report them to the CDC. The Lyme disease season begins in late May, when the ticks are in the nymphal stage. Nymphs account for nearly 90% of infections, although adult ticks also transmit the disease. Adult ticks are active from October through June in warmer areas.

Making matters worse, says pediatrician Krause of the University of Connecticut School of Medicine, is that some patients have more than one tick-borne infection. In one study, he says, about 10% of patients with Lyme disease also had babesiosis, a parasitic disease of the red blood cells, and the same may be true for ehrlichiosis, a disease discovered in 1987 caused by a bacterial parasite of white blood cells. Both are carried by the deer tick.

Yale University researcher Durland Fish recently discovered yet another organism carried by the deer tick, a bacterium similar to the one that causes Lyme, but it's not yet clear whether it causes illness.

Levesque was diagnosed not only with Lyme disease but with ehrlichiosis and babesiosis. She also had human parvovirus, a common childhood infection.

The children were tested and found also to be infected with Lyme, babesiosis and ehrlichiosis. also had Rocky Mountain spotted fever, a disease transmitted by dog ticks. Then, husband had a cardiogram that showed he needed a pacemaker to regulate his heartbeat. His blood tests turned out to be positive for Lyme, ehrlichiosis and babesiosis. "He had no other symptoms," says his wife. "He probably would never have been diagnosed. He just would have had a heart attack."

Today, after months of antibiotic treatment, all are recovering, she says.

Diagnosing Lyme disease can be tricky, scientists say. The ticks are very small, about the size of a poppy seed in the nymphal stage, and can latch on, feed and fall off without detection. Once infected, many people develop a characteristic bull's-eye rash that is a sure sign of Lyme disease, but often there is no rash, or it erupts on the scalp or elsewhere out of sight. In such cases, the illness can go undetected only to emerge months, even years, later.

Doctors usually make diagnoses based on symptoms and a history of exposure to ticks, followed up by blood tests to detect an immune system response. But the tests are not always reliable, sometimes producing false-negatives, especially early in the infection before the immune response develops.

The wide range of symptoms also can lead to misdiagnoses, says Pat , president of the Lyme Disease Association (www.lymenet.org). In some people, she says, the infection can manifest itself only in brain and central nervous system impairments, ranging from memory disturbance to seizures. Depression, bipolar disorder and tremors are other symptoms, she says, along with disturbances in thought processes. "People call it Lyme fog," she says.

In such cases, says , only a "very competent Lyme-literate physician" is likely to pinpoint Lyme disease as a cause. The Lyme Disease Association is working with Columbia University to open an endowed research center for study of Lyme and other tick-borne diseases, she says. The association is also part of a coalition of Lyme disease groups backing legislation introduced in March by U.S. Rep. , R-N.J., that would provide $125 million for Lyme research and physician education. A report from the General Accounting Office assessing Lyme disease research and funding is expected to be completed soon.

Levesque says more research is needed to investigate connections between Lyme disease and other ailments. "In my community, we have people with lupus, multiple sclerosis, Guillain-Barre syndrome," she says. "They're getting tested for Lyme and coming up positive. Why not look at the possibility these organisms could be the cause of those diseases?"

Dennis, a Lyme expert at the CDC's laboratory in Fort , Colo., agrees with the need for more research. Without clinical evidence, he warns, some patients may latch onto a Lyme disease diagnosis out of a need for an explanation for what is causing them discomfort, not because there's good evidence of infection. "If we leave it open that Lyme disease can cause anything," he says, "we give these people false hope and we divert our normal diagnostic pathways, so we may miss another (disease) that can be treated and cured."

While questions remain about Lyme disease, Dennis says, a great deal has been learned about it.

"We've been studying this disease long enough under controlled conditions that we know it has a very wide range of manifestations, but we can logically categorize these symptoms of disease based on the stage of infection," he says. "If we blow it out and say this disease can cause anything without actual clinical studies, we're straying off into never-never land."

© Copyright 2001 USA TODAY-------------------------------------------------

[Guest guest]

http://www.usatoday.com/news/healthscience/health/2001-05-31-lyme-symptoms.h

tm

05/31/2001 - Updated 10:46 AM ET

Symptom mix may or may not point to Lyme disease

By Anita Manning, USA TODAY

Two years ago, Lori Levesque of Embreeville, Pa., was suffering from an

array of seemingly unrelated symptoms that baffled her doctors: pain on her

right side, weakness, hair loss, blurred vision and chest pain.

" I had about eight specialists looking at me and had gone through three

different family practices in the area, " she says. " I had CT scans,

ultrasounds, X-rays - and nothing was being found. "

Worst of all, her children, , 12, Cara, 10, and Ailee, 7, started

showing symptoms. " would come home from school and sit on the bed and

stare. Cara would sit on the floor and say, 'I don't feel good.' My baby was

a temper tantrum waiting to happen. We were all becoming so ill. "

A friend suggested they might be suffering from Lyme disease, a tick-borne

illness that is common in rural Pennsylvania where the Levesques operate a

campground. But, Levesque says, she had been tested three times for Lyme

disease, and all were negative.

Her illness progressed. One day, as she walked from her home to the

campground, " I turned into a farm area and basically had a breakdown. I

didn't know where I was or how to get home. "

Her alarmed husband, , sought out yet another doctor, who listened to

her litany of ills and " after a 20-minute conversation, he said, 'Mrs.

Levesque, you have Lyme disease.'

" He came back with a paper and read a list of symptoms. I had 90% of them, "

she says. " No one ever put it together that they were all part of a systemic

illness. "

Lyme disease is caused by a corkscrew-shaped bacterium called a spirochete,

which is transmitted by the bite of tiny deer ticks or, on the West Coast,

by the western black-legged tick. The ticks feed mainly on white-footed mice

and white-tailed deer, along with birds and other mammals. As the deer

population has grown and expanded its range, the range of Lyme disease has

also expanded, though the risk still is highest in the Northeast and Upper

Midwest.

It was first identified in Lyme, Conn., in the mid-1970s in children who

were suffering arthritis - one of the most common symptoms - and has since

become the most commonly reported tick-borne disease in the USA, according

to the Centers for Disease Control and Prevention. The true incidence is

probably much higher, scientists say, because in some parts of the country

doctors see so many cases that they often don't bother to report them to the

CDC. The Lyme disease season begins in late May, when the ticks are in the

nymphal stage. Nymphs account for nearly 90% of infections, although adult

ticks also transmit the disease. Adult ticks are active from October through

June in warmer areas.

Making matters worse, says pediatrician Krause of the University of

Connecticut School of Medicine, is that some patients have more than one

tick-borne infection. In one study, he says, about 10% of patients with Lyme

disease also had babesiosis, a parasitic disease of the red blood cells, and

the same may be true for ehrlichiosis, a disease discovered in 1987 caused

by a bacterial parasite of white blood cells. Both are carried by the deer

tick.

Yale University researcher Durland Fish recently discovered yet another

organism carried by the deer tick, a bacterium similar to the one that

causes Lyme, but it's not yet clear whether it causes illness.

Levesque was diagnosed not only with Lyme disease but with ehrlichiosis and

babesiosis. She also had human parvovirus, a common childhood infection.

The children were tested and found also to be infected with Lyme, babesiosis

and ehrlichiosis. also had Rocky Mountain spotted fever, a disease

transmitted by dog ticks. Then, husband had a cardiogram that showed he

needed a pacemaker to regulate his heartbeat. His blood tests turned out to

be positive for Lyme, ehrlichiosis and babesiosis. " He had no other

symptoms, " says his wife. " He probably would never have been diagnosed. He

just would have had a heart attack. "

Today, after months of antibiotic treatment, all are recovering, she says.

Diagnosing Lyme disease can be tricky, scientists say. The ticks are very

small, about the size of a poppy seed in the nymphal stage, and can latch

on, feed and fall off without detection. Once infected, many people develop

a characteristic bull's-eye rash that is a sure sign of Lyme disease, but

often there is no rash, or it erupts on the scalp or elsewhere out of sight.

In such cases, the illness can go undetected only to emerge months, even

years, later.

Doctors usually make diagnoses based on symptoms and a history of exposure

to ticks, followed up by blood tests to detect an immune system response.

But the tests are not always reliable, sometimes producing false-negatives,

especially early in the infection before the immune response develops.

The wide range of symptoms also can lead to misdiagnoses, says Pat ,

president of the Lyme Disease Association (www.lymenet.org). In some people,

she says, the infection can manifest itself only in brain and central

nervous system impairments, ranging from memory disturbance to seizures.

Depression, bipolar disorder and tremors are other symptoms, she says, along

with disturbances in thought processes. " People call it Lyme fog, " she says.

In such cases, says , only a " very competent Lyme-literate physician "

is likely to pinpoint Lyme disease as a cause. The Lyme Disease Association

is working with Columbia University to open an endowed research center for

study of Lyme and other tick-borne diseases, she says. The association is

also part of a coalition of Lyme disease groups backing legislation

introduced in March by U.S. Rep. , R-N.J., that would

provide $125 million for Lyme research and physician education. A report

from the General Accounting Office assessing Lyme disease research and

funding is expected to be completed soon.

Levesque says more research is needed to investigate connections between

Lyme disease and other ailments. " In my community, we have people with

lupus, multiple sclerosis, Guillain-Barre syndrome, " she says. " They're

getting tested for Lyme and coming up positive. Why not look at the

possibility these organisms could be the cause of those diseases? "

Dennis, a Lyme expert at the CDC's laboratory in Fort , Colo.,

agrees with the need for more research. Without clinical evidence, he warns,

some patients may latch onto a Lyme disease diagnosis out of a need for an

explanation for what is causing them discomfort, not because there's good

evidence of infection. " If we leave it open that Lyme disease can cause

anything, " he says, " we give these people false hope and we divert our

normal diagnostic pathways, so we may miss another (disease) that can be

treated and cured. "

While questions remain about Lyme disease, Dennis says, a great deal has

been learned about it.

" We've been studying this disease long enough under controlled conditions

that we know it has a very wide range of manifestations, but we can

logically categorize these symptoms of disease based on the stage of

infection, " he says. " If we blow it out and say this disease can cause

anything without actual clinical studies, we're straying off into

never-never land. "