HEADACHE

Posted April 15, 2011

In retrospect, Jennifer Mankoff, now 37, believes she was infected with Lyme disease either during a trip to Ligonier in 2005 or while hiking in Frick Park in the fall of 2006.

She got a rash, one whose cause was never diagnosed, after the Ligonier trip, and she actually picked a tick off her leg after the hike in Frick Park.

Either way, the Shadyside woman, an associate professor in Carnegie Mellon’s Human-Computer Interaction Institute, got sick later in 2006. She’s not exactly sure when the symptoms started, but she was so ill that she had friends come stay with her when her husband had to travel in December.

Lyme disease is caused by a bacteria carried by ticks most commonly referred to as deer ticks, although entomologists now identify them as blacklegged ticks. They have been infected as larvae and nymphs, which feed on birds or small mammals. Adult ticks prefer deer. Any stage can feed on humans, potentially passing on the disease. It is the most common tick-borne illness in North America and Europe, and, says Lyme disease researcher Andrew J. Nowalk of Children’s Hospital of Pittsburgh of UPMC, it is a “devastating disease for patients who have it.”

On the move

The infection, once located primarily in New England and the mid-Atlantic and north-central states, is moving westward through Pennsylvania.

In 2009, according to a state-by-state report issued by the CDC, Pennsylvania had 4,950 confirmed cases plus 772 probable ones. That’s up from 3,985 cases in 2004.

But those numbers are deceptive, say both Stephen Ostroff, director of the Pennsylvania Bureau of Epidemiology and acting state physician general, and Kevin Griffith, medical epidemiologist officer in the CDC’s Division of Vector-Borne Diseases.

There are several reasons for the statistics besides a simple spread of the Lyme bacteria. They include a change in the CDC reporting procedure that has led to increased surveillance, Dr. Griffith said; what Dr. Ostroff calls “a greater recognition and appreciation” that has led to more testing and identification of Lyme; and an increase of people moving into previously wooded, high-risk areas.

The CDC also has recently changed the definition of a positive Western blot, the test used to confirm the presence of Lyme antibodies in the blood, which also could lead to more reported cases.

Nevertheless, Dr. Ostroff sees a geographic spread of the Lyme bacteria.

“When you look at it nationally, the numbers are increasing, and we also see — and this is the case in Pennsylvania as well — a westward movement,” he said. “Previously, the overwhelming proportion of cases being reported were from the southeast [part of the state], but increasingly, we’re seeing [them] in the central and northeast.”

According to a county-by-county report from the Department of Health, Cameron County in the north-central part of the state had an incidence rate of 267.0 cases per 100,000 residents in 2006-08. To the west, Elk County had an incidence rate of 171.3, while to the south, Clearfield County’s rate was 81.4.

“How far west and when this will spread, I believe, is only a matter of time,” Dr. Ostroff added. “It’s inevitable it will continue to increase in areas that haven’t been as heavily impacted as other areas of the state have been.”

There is some disagreement over whether the spread already has begun in southwestern Pennsylvania.

Erick Bergquist, an infectious disease consultant for Excela Health in Westmoreland, Indiana and Armstrong counties, is seeing more cases but says the reasons are “increasing awareness of the public and their physicians to Lyme disease” and the CDC’s change in the blot test.

Similarly, Dr. Nowalk cites both greater awareness of Lyme and a spread of the Lyme bacteria as reasons for an increase of two to three times the number of cases — he estimates a total of 60 or 70 — seen by Children’s Hospital last year. He also said experts believe the “true number” of Lyme cases is two to three times greater than that reported.

“We’re definitely seeing more cases from areas where we had not seen them before,” he said, citing Frick Park and Washington County. “Butler County, Beaver County, the DuBois area, they really have a very high rate. Enough people are concentrated near deer and deer ticks that we see a lot of cases from just north of this area.”

But Nalini Rao, chief of the division of infectious diseases, UPMC Shadyside, said she hasn’t seen a “tremendous increase in cases.”

The Allegheny County Health Department’s official numbers also are fairly insignificant, ranging over the past seven years from a low of 14 cases in 2008 to 32 in 2005. There were 18 cases reported last year.

Those numbers, however, do not mean the cases of Lyme actually were contracted within the county’s borders. Rather, according to department spokesman Guillermo Cole, they mean in each case that a county resident contracted the disease and that it was reported to the state health department, which listed it in the Allegheny County totals, according to the state’s procedure for reporting infectious diseases.

Mr. Cole said he suspects the disease-bearing ticks can be found throughout the county.

“I’ve never been told of any particular hot spots, [but] you can pretty much get this wherever there’s woods, and woods are pretty much anywhere in Allegheny County.”

Symptoms and treatment

Symptoms of Lyme disease can range from a rash that looks like a bull’s-eye (erythema migrans) to flu-like complaints to nervous system problems like facial paralysis and cardiac ailments like heart block to arthritis.

It is treated and, especially if diagnosed early, easily cured with antibiotics.

“The later the diagnosis, the longer the duration of antibiotics you’ll need,” said Dr. Nowalk, a specialist in pediatric infectious diseases and assistant professor of pediatrics at Children’s and the University of Pittsburgh School of Medicine.

How long a duration is a matter of some controversy that can be traced to the fact that some symptoms can linger for a very, very long time. “There can be a lot of damage or symptoms that can last months or even years,” Dr. Nowalk said.

Some doctors believe those lingering symptoms mean the treatable form of the disease has developed into an untreatable autoimmune disorder they call post-Lyme disease syndrome.

Other physicians and groups call the lingering ailment chronic Lyme disease, and some of them advocate very long and varied courses of antibiotics. In some cases, insurance companies have denied coverage of that treatment.

The Centers for Disease Control and Prevention recommend two, two- to four-week courses of antibiotics, citing three federally funded studies that showed longer courses were not beneficial and had been linked to serious complications.

Most of the doctors contacted for this article said they use the CDC guidelines.

One woman’s story

The woods are where Jen Mankoff likes to bushwhack, bird watch and pick seed pods with her children, who both have had what she termed “controversial” diagnoses of Lyme disease that did not meet the CDC’s definition of positive antibodies tests. Her 13-year-old golden retriever, Demi, also has been treated for it three times, most recently this year.

But her children have not been as badly affected as Ms. Mankoff. In January 2007, she started keeping a diary that included symptoms of what much later was diagnosed as Lyme disease. They included:

— Cold or flu symptoms every couple of weeks;

— Inability to sleep;

— Hearing problems;

— Persistent exhaustion;

— A “locked jaw” that made chewing difficult; and

— Shooting pains in her neck and shoulder.

During this period, she had a mononucleosis test, a CT scan, and a chest X-ray. All were negative. She saw several doctors, but none of them tested her for Lyme disease. “I go in the woods; I travel to New York,” she said. “I should be suspected.” She had had a rash after her Ligonier visit, but it didn’t have the bull’s-eye shape.

Finally, thinking the neck and shoulder pains might be a repetitive strain injury, she went to a massage therapist who asked if she had been tested for Lyme.

Ms. Mankoff found a doctor who gave her both an ELISA antibodies test and a confimatory Western blot. Both tests came up “clearcut CDC positive” for Lyme disease, she said.

Meanwhile, she continued having symptoms such as headaches and signs of a weakened immune system.

She went to an infectious disease doctor, who prescribed a three-week course of antibiotics. When she was no better, she went to a different doctor, who prescribed six weeks of intravenous antibiotics.

She still was symptomatic after the six weeks of IV treatment, but the doctor refused to continue the drugs. She had the catheter pulled out on Christmas Eve 2007 and went on to try everything from “yoga to acupuncture.” She said the two doctors who had treated her with antibiotics told her either the symptoms would go away or that she had an incurable autoimmune disease.

“Meanwhile, I was getting sicker and sicker and sicker,” she said.

Then she read science and health writer Pamela Weintraub’s “Cure Unknown: Inside the Lyme Epidemic,” which detailed the controversy, and “switched sides.”

She found a doctor willing to do long-term therapy, Daniel J. Cameron, of Mount Kisco, N.Y., a well-known Lyme disease doctor who says he treats both acute patients with “simple oral antibiotics” and chronic patients who need varied courses of drugs among the hundreds he sees each year. Another local doctor was available for consultation.

“There’s certain people who are chronically ill,” Dr. Cameron said. “I feel that quite a few respond to antibiotics, and that’s a reason to treat. There are always some people who will fail treatment. Too many people stop prematurely before trying an alternative antibiotic.”

With Dr. Cameron doing the majority of the treatments, Ms. Mankoff said she took antibiotics for about 18 months, until October 2009, when her symptoms were relieved. “I’ve been off them ever since.”

But Ms. Mankoff, who managed to get tenure during those 18 months while also needing a term off on disability leave, says she still thinks her health may be compromised by her experience with Lyme disease.

“I’m way better [but] I’m still symptomatic at times. … I just hope I don’t have a serious relapse.”

Pohla Smith: psmith@post-gazette.com or 412-263-1228.

To see more of the Pittsburgh Post-Gazette, or to subscribe to the newspaper, go to http://www.post-gazette.com.

Copyright © 2011, Pittsburgh Post-Gazette

In retrospect, Jennifer Mankoff, now 37, believes she was infected with Lyme disease either during a trip to Ligonier in 2005 or while hiking in Frick Park in the fall of 2006.

She got a rash, one whose cause was never diagnosed, after the Ligonier trip, and she actually picked a tick off her leg after the hike in Frick Park.

Either way, the Shadyside woman, an associate professor in Carnegie Mellon's Human-Computer Interaction Institute, got sick later in 2006. She's not exactly sure when the symptoms started, but she was so ill that she had friends come stay with her when her husband had to travel in December.

Lyme disease is caused by a bacteria carried by ticks most commonly referred to as deer ticks, although entomologists now identify them as blacklegged ticks. They have been infected as larvae and nymphs, which feed on birds or small mammals. Adult ticks prefer deer. Any stage can feed on humans, potentially passing on the disease. It is the most common tick-borne illness in North America and Europe, and, says Lyme disease researcher Andrew J. Nowalk of Children's Hospital of Pittsburgh of UPMC, it is a "devastating disease for patients who have it."

On the move

The infection, once located primarily in New England and the mid-Atlantic and north-central states, is moving westward through Pennsylvania.

In 2009, according to a state-by-state report issued by the CDC, Pennsylvania had 4,950 confirmed cases plus 772 probable ones. That's up from 3,985 cases in 2004.

But those numbers are deceptive, say both Stephen Ostroff, director of the Pennsylvania Bureau of Epidemiology and acting state physician general, and Kevin Griffith, medical epidemiologist officer in the CDC's Division of Vector-Borne Diseases.

There are several reasons for the statistics besides a simple spread of the Lyme bacteria. They include a change in the CDC reporting procedure that has led to increased surveillance, Dr. Griffith said; what Dr. Ostroff calls "a greater recognition and appreciation" that has led to more testing and identification of Lyme; and an increase of people moving into previously wooded, high-risk areas.

The CDC also has recently changed the definition of a positive Western blot, the test used to confirm the presence of Lyme antibodies in the blood, which also could lead to more reported cases.

Nevertheless, Dr. Ostroff sees a geographic spread of the Lyme bacteria.

"When you look at it nationally, the numbers are increasing, and we also see -- and this is the case in Pennsylvania as well -- a westward movement," he said. "Previously, the overwhelming proportion of cases being reported were from the southeast [part of the state], but increasingly, we're seeing [them] in the central and northeast."

According to a county-by-county report from the Department of Health, Cameron County in the north-central part of the state had an incidence rate of 267.0 cases per 100,000 residents in 2006-08. To the west, Elk County had an incidence rate of 171.3, while to the south, Clearfield County's rate was 81.4.

"How far west and when this will spread, I believe, is only a matter of time," Dr. Ostroff added. "It's inevitable it will continue to increase in areas that haven't been as heavily impacted as other areas of the state have been."

There is some disagreement over whether the spread already has begun in southwestern Pennsylvania.

Erick Bergquist, an infectious disease consultant for Excela Health in Westmoreland, Indiana and Armstrong counties, is seeing more cases but says the reasons are "increasing awareness of the public and their physicians to Lyme disease" and the CDC's change in the blot test.

Similarly, Dr. Nowalk cites both greater awareness of Lyme and a spread of the Lyme bacteria as reasons for an increase of two to three times the number of cases -- he estimates a total of 60 or 70 -- seen by Children's Hospital last year. He also said experts believe the "true number" of Lyme cases is two to three times greater than that reported.

"We're definitely seeing more cases from areas where we had not seen them before," he said, citing Frick Park and Washington County. "Butler County, Beaver County, the DuBois area, they really have a very high rate. Enough people are concentrated near deer and deer ticks that we see a lot of cases from just north of this area."

But Nalini Rao, chief of the division of infectious diseases, UPMC Shadyside, said she hasn't seen a "tremendous increase in cases."

The Allegheny County Health Department's official numbers also are fairly insignificant, ranging over the past seven years from a low of 14 cases in 2008 to 32 in 2005. There were 18 cases reported last year.

Those numbers, however, do not mean the cases of Lyme actually were contracted within the county's borders. Rather, according to department spokesman Guillermo Cole, they mean in each case that a county resident contracted the disease and that it was reported to the state health department, which listed it in the Allegheny County totals, according to the state's procedure for reporting infectious diseases.

Mr. Cole said he suspects the disease-bearing ticks can be found throughout the county.

"I've never been told of any particular hot spots, [but] you can pretty much get this wherever there's woods, and woods are pretty much anywhere in Allegheny County."

Symptoms and treatment

Symptoms of Lyme disease can range from a rash that looks like a bull's-eye (erythema migrans) to flu-like complaints to nervous system problems like facial paralysis and cardiac ailments like heart block to arthritis.

It is treated and, especially if diagnosed early, easily cured with antibiotics.

"The later the diagnosis, the longer the duration of antibiotics you'll need," said Dr. Nowalk, a specialist in pediatric infectious diseases and assistant professor of pediatrics at Children's and the University of Pittsburgh School of Medicine.

How long a duration is a matter of some controversy that can be traced to the fact that some symptoms can linger for a very, very long time. "There can be a lot of damage or symptoms that can last months or even years," Dr. Nowalk said.

Some doctors believe those lingering symptoms mean the treatable form of the disease has developed into an untreatable autoimmune disorder they call post-Lyme disease syndrome.

Other physicians and groups call the lingering ailment chronic Lyme disease, and some of them advocate very long and varied courses of antibiotics. In some cases, insurance companies have denied coverage of that treatment.

The Centers for Disease Control and Prevention recommend two, two- to four-week courses of antibiotics, citing three federally funded studies that showed longer courses were not beneficial and had been linked to serious complications.

Most of the doctors contacted for this article said they use the CDC guidelines.

One woman's story

The woods are where Jen Mankoff likes to bushwhack, bird watch and pick seed pods with her children, who both have had what she termed "controversial" diagnoses of Lyme disease that did not meet the CDC's definition of positive antibodies tests. Her 13-year-old golden retriever, Demi, also has been treated for it three times, most recently this year.

But her children have not been as badly affected as Ms. Mankoff. In January 2007, she started keeping a diary that included symptoms of what much later was diagnosed as Lyme disease. They included:

-- Cold or flu symptoms every couple of weeks;

-- Inability to sleep;

-- Hearing problems;

-- Persistent exhaustion;

-- A "locked jaw" that made chewing difficult; and

-- Shooting pains in her neck and shoulder.

During this period, she had a mononucleosis test, a CT scan, and a chest X-ray. All were negative. She saw several doctors, but none of them tested her for Lyme disease. "I go in the woods; I travel to New York," she said. "I should be suspected." She had had a rash after her Ligonier visit, but it didn't have the bull's-eye shape.

Finally, thinking the neck and shoulder pains might be a repetitive strain injury, she went to a massage therapist who asked if she had been tested for Lyme.

Ms. Mankoff found a doctor who gave her both an ELISA antibodies test and a confimatory Western blot. Both tests came up "clearcut CDC positive" for Lyme disease, she said.

Meanwhile, she continued having symptoms such as headaches and signs of a weakened immune system.

She went to an infectious disease doctor, who prescribed a three-week course of antibiotics. When she was no better, she went to a different doctor, who prescribed six weeks of intravenous antibiotics.

She still was symptomatic after the six weeks of IV treatment, but the doctor refused to continue the drugs. She had the catheter pulled out on Christmas Eve 2007 and went on to try everything from "yoga to acupuncture." She said the two doctors who had treated her with antibiotics told her either the symptoms would go away or that she had an incurable autoimmune disease.

"Meanwhile, I was getting sicker and sicker and sicker," she said.

Then she read science and health writer Pamela Weintraub's "Cure Unknown: Inside the Lyme Epidemic," which detailed the controversy, and "switched sides."

She found a doctor willing to do long-term therapy, Daniel J. Cameron, of Mount Kisco, N.Y., a well-known Lyme disease doctor who says he treats both acute patients with "simple oral antibiotics" and chronic patients who need varied courses of drugs among the hundreds he sees each year. Another local doctor was available for consultation.

"There's certain people who are chronically ill," Dr. Cameron said. "I feel that quite a few respond to antibiotics, and that's a reason to treat. There are always some people who will fail treatment. Too many people stop prematurely before trying an alternative antibiotic."

With Dr. Cameron doing the majority of the treatments, Ms. Mankoff said she took antibiotics for about 18 months, until October 2009, when her symptoms were relieved. "I've been off them ever since."

But Ms. Mankoff, who managed to get tenure during those 18 months while also needing a term off on disability leave, says she still thinks her health may be compromised by her experience with Lyme disease.

"I'm way better [but] I'm still symptomatic at times. ... I just hope I don't have a serious relapse."

Pohla Smith: psmith@post-gazette.com or 412-263-1228.

To see more of the Pittsburgh Post-Gazette, or to subscribe to the newspaper, go to http://www.post-gazette.com.

Copyright © 2011, Pittsburgh Post-Gazette

Tags: Arthritis, Chest, Children, Cold, Flu, Headache, Headaches, Heart, Hot spots, Immune, Immune system, Injury, Massage, Nervous system, Pain, Sleep, Vision

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