Hi Friends,
I need to inform you of a great new book written by a woman who has struggled with Lyme disease. Her name is Brandilyn Collins and the book is titled Over the Edge. It is a suspense novel in which the main character struggles with Lyme disease. Here is a link to see for your self, http://www.lymedisease.org/news/touchedbylyme/overtheedge.html
This book is a great read so don't hesitate to get your own copy. You can draw your own conclusions about whether you think she had done a good job capturing the struggles of having Lyme disease.
Be well,
Richard
Showing posts with label Lyme Disease Symptoms. Show all posts
Showing posts with label Lyme Disease Symptoms. Show all posts
Friday, April 15, 2011
Sunday, May 16, 2010
Mysterious Lyme Disease
Here is a great article from the Chicago Sun Times. It is another story of another life affected by this cruel disease
Be well,
Richard
Begin quote:
Shedding light on the mysterious Lyme disease
Patient suffered from painful symptoms of 'the great masquerader' until specialist got a handle on disease
May 5, 2010
BY CAROL SLEZAK cslezak@suntimes.com
When Michael Plahn suddenly began feeling achy and nauseous last Memorial Day, he assumed he had the flu. But when the nausea subsided a few days later, only to be replaced by extreme joint pain and a feeling of utter exhaustion, Plahn realized he was dealing with something else. It was time to see a doctor.
What followed for Plahn was a maddening journey through a medical system that was either unable or unwilling to diagnose and effectively treat his symptoms. Plahn, 38, had no intention of becoming a pawn in a political battle between doctors and insurance companies, but that's what he and an untold number of others seem to have become. They are people suffering from a debilitating illness that some doctors recognize as chronic Lyme disease, and other doctors don't recognize at all.
» Click to enlarge image
Chicagoan Michael Plahn, with infant son Oliver and fiancee Sarah Wilde, says impending fatherhood and other stressful events may have triggered his symptoms.
(Keith Hale/Sun-Times)
Plahn, a Chicagoan, lost track of the number of physicians he saw at a major Chicago hospital last summer, but remembers an internist, an infectious disease specialist, an allergist, a rheumatologist -- plus a few trips to the emergency room when his pain became unbearable. No one was able to diagnose his illness, but they all agreed that he didn't have Lyme disease.
"Early on I was given a Lyme disease test ... but I was told I didn't have it," Plahn said.
Plahn, founder of Life Skills Authorities, a company that helps people fight chemical addiction, recalls one ER doctor laughing at him.
"He said, 'I read your charts and you don't have Lyme disease,'" Plahn said. "He was insinuating that I just wanted to get pain-killers. You know, I know the signs of chemical dependency. I was worried about myself, too. But I didn't know what else to do."
Plahn's fiancee, Sarah Wilde, watched her partner go from an energetic, robust man to a sick and frightened one. His joints were swollen, his muscles hurt, his brain felt foggy. He lost 25 pounds, and most of his energy.
"He had been the picture of perfect health," Wilde said. "He'd built an entire business around helping others be healthy. And suddenly he couldn't even exercise."
Wilde, the director of partner management for Yahoo!, began researching Plahn's symptoms online, and came across something called "chronic Lyme disease." The more Wilde read, the more convinced she became that Plahn had chronic Lyme. But there wasn't a single doctor within this big-city hospital system that agreed. One specialist diagnosed "adrenal fatigue" and prescribed steroids. Another hinted to Plahn that his illness was psychosomatic.
Plahn recited the hospital's final words on the subject: "This was a strong virus of undetermined nature. He will have extreme pain for an undisclosed amount of time."
At his lowest points, Plahn remembers thinking, "Let this be cancer, so at least we can go after it and try to treat it."
'Lyme-literate' doctors
The medical profession agrees on this much: Lyme disease is caused by a spiral-shaped bacteria called Borrelia burgdorferi that's transmitted by tick bites. (The illness was named after the city of Lyme, Conn., where a cluster of the disease was found in the 1970s.) Although it has been reported most heavily in the northeastern United States, Lyme disease has been reported in every state, and across the globe. It can affect the skin, joints, heart and nervous system. Oral antibiotics are the standard treatment for early-stage Lyme disease.
Beyond that, things get tricky. According to the International Lyme and Associated Diseases Society, a significant number of people who contract Lyme either are misdiagnosed during the early stages, or fail to seek medical attention, leading to a chronic form of the disease that requires long-term antibiotic treatment. But in guidelines first published in 2006, the powerful Infectious Disease Society of America maintains there is no scientific evidence to support this theory, and that long-term antibiotic use is dangerous.
In a review prompted by an antitrust challenge by Connecticut Attorney General Richard Blumenthal, a special review panel for the IDSA recently upheld the '06 guidelines. (Blumenthal had questioned the impartiality of the guidelines' authors, suggesting they had undisclosed conflicts of interest.) Although the guidelines are technically not mandatory, many insurance companies use them to deny coverage for chronic Lyme treatment, creating a discouraging situation for patients.
"I don't understand why some doctors want to ignore that this is happening," Wilde said. "It's frustrating that they've turned a blind eye to it, or scarier, that they're saying it's something else."
The medical establishment says it's simply a matter of science.
"They are chronically ill, a little desperate and they are searching for answers," said Dr. Paul Mead, an epidemiologist for the Centers for Disease Control and Prevention. "We can all understand that. The question is: Is the treatment they are getting beneficial?"
Doctors who treat chronic Lyme, dubbed "Lyme-literate" physicians, are few and far between. Plahn travels to Fond du Lac, Wis., for treatment from Dr. Steven Meress of the Fox Valley Wellness Center. After about six months under Meress' care, Plahn has noticed significant improvement. His pain has subsided, his brain is not as foggy, and he has regained some energy. He feels like he is on the right track.
"With chronic Lyme, people think they are going crazy," Plahn said. "You think, 'I'm in excruciating pain, but could it be all in my head?' Could it be psychosomatic? I was open to exploring that. But whatever I have is very real. It came on abruptly and it was not leaving."
Meress, an internist whose practice combines traditional and integrated approaches, sees Lyme patients from 18 states and four countries.
"My patients on average have seen seven physicians over the course of 20 months before coming to me," he said. "They are sick and they are frustrated. Lyme disease has become a political battlefield, and the patients have been put in the middle of this. It's doctor vs. doctor, insurance company vs. insurance company. People have spent $15,000, $30,000 out of pocket to fight this disease. They've lost jobs, spouses, houses. Sometimes it's better to have cancer -- at least the treatment is paid for."
Why are long-term antibiotics necessary? According to the chronic Lyme camp, because the organism that causes Lyme disease is a complicated one that can hide inside human cells, and often is accompanied by co-infections. "This disease is not easy to treat," Meress said.
The chronic Lyme controversy has resulted in investigations of some Lyme-literate physicians by state medical boards. It also has spawned legislative bills in several states aimed at protecting doctors who prescribe long-term antibiotics to treat chronic Lyme.
"It's interesting that it's OK to give [the antibiotic] Doxycycline for five years for acne, but the IDSA suggests only 14 days for Lyme disease," Meress said. "Acne doesn't kill people. Lyme does."
'The great masquerader'
The chronic Lyme camp believes there is no reliable diagnostic test for Lyme, resulting in many false negative results. And Lyme symptoms can mimic those of many other diseases, including Parkinson's, fibromyalgia, multiple sclerosis, Alzheimer's and ALS. The chronic camp calls Lyme "the great masquerader."
Take the case of a Colorado doctor named David Martz. He was diagnosed with ALS, or Lou Gehrig's disease, in 2003 and given two years to live. Although he had initially tested negative for Lyme, he pursued treatment by a Lyme-literate doctor -- and the treatment reversed his symptoms and saved his life.
Some researchers believe patients diagnosed with rheumatologic and neurologic conditions, as well as multi-system illnesses, should be evaluated for chronic Lyme.
A 2009 documentary, "Under Our Skin," shed light on chronic Lyme while taking aim at the IDSA and the medical establishment. But the CDC, which links to the IDSA guidelines on its Web site (cdc.gov), stresses that sound scientific principles form the basis of the guidelines.
"Misdiagnosis is not in the patients' best interest," Mead said. "Yes, we don't know everything. And the patients feel abandoned and frustrated by all of us. ... Is it a persistent infection or post-infection complication? It's been studied several times and all available evidence indicates it's not a persistent infection. But because there was still concern that [patients] might benefit from longer-term antibiotics, several well-defined studies were conducted, and all showed there was no benefit."
From 1992 to 2006, the number of reported Lyme disease cases in the United States more than doubled, from 9,908 to 19,931. In 2008, there were 28,921 confirmed cases -- 108 of them in Illinois. It's commonly believed that the disease frequently goes unreported.
Plahn, an urbanite whose idea of camping is going to the Four Seasons, has no idea where he might have been bitten. But disease-carrying ticks are everywhere, Meress said, including in our backyards and on our pets. Plahn never noticed a telltale Lyme bull's-eye rash on his body, but that's not uncommon, Meress said, noting that fewer than 50 percent of infected people recall a rash.
Plahn learned from Meress that he had been infected for at least 18 months -- and possibly much longer -- before experiencing the symptoms that led him to seek help.
"It was in my bones, my lymph system, everywhere," Plahn said.
He believes that stress -- he was starting a new company, and Wilde was pregnant with the couple's son Oliver, who was born in September -- must have triggered his symptoms because "that's the only thing that makes sense."
There are still so many unanswered questions. For Plahn and Wilde, of course. And for the medical community as well. But like many others suffering from the illness, Plahn and Wilde are confident they've made the right treatment choice.
"At the end of the day we're just happy to have found something to help him feel better," Wilde said.
Be well,
Richard
Begin quote:
Shedding light on the mysterious Lyme disease
Patient suffered from painful symptoms of 'the great masquerader' until specialist got a handle on disease
May 5, 2010
BY CAROL SLEZAK cslezak@suntimes.com
When Michael Plahn suddenly began feeling achy and nauseous last Memorial Day, he assumed he had the flu. But when the nausea subsided a few days later, only to be replaced by extreme joint pain and a feeling of utter exhaustion, Plahn realized he was dealing with something else. It was time to see a doctor.
What followed for Plahn was a maddening journey through a medical system that was either unable or unwilling to diagnose and effectively treat his symptoms. Plahn, 38, had no intention of becoming a pawn in a political battle between doctors and insurance companies, but that's what he and an untold number of others seem to have become. They are people suffering from a debilitating illness that some doctors recognize as chronic Lyme disease, and other doctors don't recognize at all.
» Click to enlarge image
Chicagoan Michael Plahn, with infant son Oliver and fiancee Sarah Wilde, says impending fatherhood and other stressful events may have triggered his symptoms.
(Keith Hale/Sun-Times)
Plahn, a Chicagoan, lost track of the number of physicians he saw at a major Chicago hospital last summer, but remembers an internist, an infectious disease specialist, an allergist, a rheumatologist -- plus a few trips to the emergency room when his pain became unbearable. No one was able to diagnose his illness, but they all agreed that he didn't have Lyme disease.
"Early on I was given a Lyme disease test ... but I was told I didn't have it," Plahn said.
Plahn, founder of Life Skills Authorities, a company that helps people fight chemical addiction, recalls one ER doctor laughing at him.
"He said, 'I read your charts and you don't have Lyme disease,'" Plahn said. "He was insinuating that I just wanted to get pain-killers. You know, I know the signs of chemical dependency. I was worried about myself, too. But I didn't know what else to do."
Plahn's fiancee, Sarah Wilde, watched her partner go from an energetic, robust man to a sick and frightened one. His joints were swollen, his muscles hurt, his brain felt foggy. He lost 25 pounds, and most of his energy.
"He had been the picture of perfect health," Wilde said. "He'd built an entire business around helping others be healthy. And suddenly he couldn't even exercise."
Wilde, the director of partner management for Yahoo!, began researching Plahn's symptoms online, and came across something called "chronic Lyme disease." The more Wilde read, the more convinced she became that Plahn had chronic Lyme. But there wasn't a single doctor within this big-city hospital system that agreed. One specialist diagnosed "adrenal fatigue" and prescribed steroids. Another hinted to Plahn that his illness was psychosomatic.
Plahn recited the hospital's final words on the subject: "This was a strong virus of undetermined nature. He will have extreme pain for an undisclosed amount of time."
At his lowest points, Plahn remembers thinking, "Let this be cancer, so at least we can go after it and try to treat it."
'Lyme-literate' doctors
The medical profession agrees on this much: Lyme disease is caused by a spiral-shaped bacteria called Borrelia burgdorferi that's transmitted by tick bites. (The illness was named after the city of Lyme, Conn., where a cluster of the disease was found in the 1970s.) Although it has been reported most heavily in the northeastern United States, Lyme disease has been reported in every state, and across the globe. It can affect the skin, joints, heart and nervous system. Oral antibiotics are the standard treatment for early-stage Lyme disease.
Beyond that, things get tricky. According to the International Lyme and Associated Diseases Society, a significant number of people who contract Lyme either are misdiagnosed during the early stages, or fail to seek medical attention, leading to a chronic form of the disease that requires long-term antibiotic treatment. But in guidelines first published in 2006, the powerful Infectious Disease Society of America maintains there is no scientific evidence to support this theory, and that long-term antibiotic use is dangerous.
In a review prompted by an antitrust challenge by Connecticut Attorney General Richard Blumenthal, a special review panel for the IDSA recently upheld the '06 guidelines. (Blumenthal had questioned the impartiality of the guidelines' authors, suggesting they had undisclosed conflicts of interest.) Although the guidelines are technically not mandatory, many insurance companies use them to deny coverage for chronic Lyme treatment, creating a discouraging situation for patients.
"I don't understand why some doctors want to ignore that this is happening," Wilde said. "It's frustrating that they've turned a blind eye to it, or scarier, that they're saying it's something else."
The medical establishment says it's simply a matter of science.
"They are chronically ill, a little desperate and they are searching for answers," said Dr. Paul Mead, an epidemiologist for the Centers for Disease Control and Prevention. "We can all understand that. The question is: Is the treatment they are getting beneficial?"
Doctors who treat chronic Lyme, dubbed "Lyme-literate" physicians, are few and far between. Plahn travels to Fond du Lac, Wis., for treatment from Dr. Steven Meress of the Fox Valley Wellness Center. After about six months under Meress' care, Plahn has noticed significant improvement. His pain has subsided, his brain is not as foggy, and he has regained some energy. He feels like he is on the right track.
"With chronic Lyme, people think they are going crazy," Plahn said. "You think, 'I'm in excruciating pain, but could it be all in my head?' Could it be psychosomatic? I was open to exploring that. But whatever I have is very real. It came on abruptly and it was not leaving."
Meress, an internist whose practice combines traditional and integrated approaches, sees Lyme patients from 18 states and four countries.
"My patients on average have seen seven physicians over the course of 20 months before coming to me," he said. "They are sick and they are frustrated. Lyme disease has become a political battlefield, and the patients have been put in the middle of this. It's doctor vs. doctor, insurance company vs. insurance company. People have spent $15,000, $30,000 out of pocket to fight this disease. They've lost jobs, spouses, houses. Sometimes it's better to have cancer -- at least the treatment is paid for."
Why are long-term antibiotics necessary? According to the chronic Lyme camp, because the organism that causes Lyme disease is a complicated one that can hide inside human cells, and often is accompanied by co-infections. "This disease is not easy to treat," Meress said.
The chronic Lyme controversy has resulted in investigations of some Lyme-literate physicians by state medical boards. It also has spawned legislative bills in several states aimed at protecting doctors who prescribe long-term antibiotics to treat chronic Lyme.
"It's interesting that it's OK to give [the antibiotic] Doxycycline for five years for acne, but the IDSA suggests only 14 days for Lyme disease," Meress said. "Acne doesn't kill people. Lyme does."
'The great masquerader'
The chronic Lyme camp believes there is no reliable diagnostic test for Lyme, resulting in many false negative results. And Lyme symptoms can mimic those of many other diseases, including Parkinson's, fibromyalgia, multiple sclerosis, Alzheimer's and ALS. The chronic camp calls Lyme "the great masquerader."
Take the case of a Colorado doctor named David Martz. He was diagnosed with ALS, or Lou Gehrig's disease, in 2003 and given two years to live. Although he had initially tested negative for Lyme, he pursued treatment by a Lyme-literate doctor -- and the treatment reversed his symptoms and saved his life.
Some researchers believe patients diagnosed with rheumatologic and neurologic conditions, as well as multi-system illnesses, should be evaluated for chronic Lyme.
A 2009 documentary, "Under Our Skin," shed light on chronic Lyme while taking aim at the IDSA and the medical establishment. But the CDC, which links to the IDSA guidelines on its Web site (cdc.gov), stresses that sound scientific principles form the basis of the guidelines.
"Misdiagnosis is not in the patients' best interest," Mead said. "Yes, we don't know everything. And the patients feel abandoned and frustrated by all of us. ... Is it a persistent infection or post-infection complication? It's been studied several times and all available evidence indicates it's not a persistent infection. But because there was still concern that [patients] might benefit from longer-term antibiotics, several well-defined studies were conducted, and all showed there was no benefit."
From 1992 to 2006, the number of reported Lyme disease cases in the United States more than doubled, from 9,908 to 19,931. In 2008, there were 28,921 confirmed cases -- 108 of them in Illinois. It's commonly believed that the disease frequently goes unreported.
Plahn, an urbanite whose idea of camping is going to the Four Seasons, has no idea where he might have been bitten. But disease-carrying ticks are everywhere, Meress said, including in our backyards and on our pets. Plahn never noticed a telltale Lyme bull's-eye rash on his body, but that's not uncommon, Meress said, noting that fewer than 50 percent of infected people recall a rash.
Plahn learned from Meress that he had been infected for at least 18 months -- and possibly much longer -- before experiencing the symptoms that led him to seek help.
"It was in my bones, my lymph system, everywhere," Plahn said.
He believes that stress -- he was starting a new company, and Wilde was pregnant with the couple's son Oliver, who was born in September -- must have triggered his symptoms because "that's the only thing that makes sense."
There are still so many unanswered questions. For Plahn and Wilde, of course. And for the medical community as well. But like many others suffering from the illness, Plahn and Wilde are confident they've made the right treatment choice.
"At the end of the day we're just happy to have found something to help him feel better," Wilde said.
Tuesday, September 8, 2009
New tick disease moves into La Crosse area (WI)
I found this article about a new tick disease. I thought you would appreciate learning something about this disease. This is an area in Wisconsin, but we should all be aware of it if we see symptoms of it. As always, we appreciate the Lacrosse Tribune for great reporting. Here is the link for the full article:http://www.lacrossetribune.com/news/article_ded7b774-9b65-11de-9e68-001cc4c002e0.html
Be well!
Richard
By TERRY RINDFLEISCH | trindfleisch@lacrossetribune.com | Posted: Monday, September 7, 2009 12:05 am |
What is it? Anaplasmosis is a tick-borne disease caused by a species of bacteria called Anaplasma phagocytophilum. It was previously known as human granulocytic ehrlichiosis (HGE) and later as human granulocytic anaplasmosis (HGA).
How do people get it? Anaplasmosis is transmitted to humans by tick bites primarily from the blacklegged tick (Ixodes scapularis) in the eastern United States and the western blacklegged tick (Ixodes pacificus) in the western United States. Of the four distinct phases in the tick life-cycle (egg, larvae, nymph, adult), nymphal and adult ticks are most frequently associated with transmission of anaplasmosis to humans.
Where do most cases occur? About 600 to 800 cases of anaplasmosis are reported to Centers for Disease Control and Prevention each year. States reporting the highest incidence of anaplasmosis in 2006 were Minnesota, Wisconsin, New York, New Jersey and Connecticut.
La Crosse area health officials are seeing more cases of a new tick-borne infection carried by the same deer tick that causes Lyme disease.
Gundersen Lutheran researchers have been monitoring anaplasmosis the last three years and report 50 human cases in the La Crosse area.
The researchers have developed a test for the disease and have been testing blood samples in Gundersen Lutheran Medical Foundation's microbiology laboratories at the La Crosse Health Science Center.
"It is an emerging infection in this area," said Dean Jobe, researcher and supervisor of Gundersen Lutheran's laboratories. "In collecting ticks, we have found it in 10 to 15 percent of the ticks."
Only a few years ago, the disease was rare in the La Crosse area, he said.
"It is mimicking early Lyme," Jobe said. "We used to say we couldn't find ticks with Lyme south of I-90, and now we see plenty of ticks, and the same is happening with anaplasmosis."
Unlike Lyme, anaplasmosis is an infection of the white blood cells, he said. Lyme disease is primarily a skin infection that gets
into the bloodstream and spreads into the joints, Jobe said.
"We've seen an increase in anaplasmosis over the last couple years, but particularly more this year," said Dr. Todd Kowalski, a Gundersen Lutheran physician specializing in infectious diseases. "It's been on our radar for 15 years or more with cases in northern Wisconsin, but the last few years it has been emerging in our area."
Kowalski said symptoms are similar to Lyme such as fever, headache and body aches, but people don't get a rash with anaplasmosis.
"It's not a subtle disease," Kowalski said. "Most people feel worse, and it's a little bit more abrupt than Lyme with perhaps a higher fever and more severe headache and body aches.
"With anaplasmosis, patients don't wait as long to see their physician or go to urgent care or the ER," he said. "But it is a very treatable disease. "
Kowalski said anaplasmosis is treated the same way as Lyme with a tetracycline antibiotic.
"What's rewarding is when patients are put on antibiotics, within 24 to 36 hours they feel a lot better," he said.
He also said prevention measures and the tick season from early spring to late fall are the same for both diseases. Kowalski said the same person can get the two infections at the same time.
He said most La Crosse area primary care, urgent care and emergency medicine physicians are aware of anaplasmosis.
Gundersen Lutheran has conducted research on the disease and developed an accurate molecular test which detects a gene unique to the organism and it can be done rapidly, Jobe said.
He said Gundersen Lutheran also is studying the best time to use the test in the course of the disease.
Jobe said the number of Lyme cases has continued to rise every year due to a bigger deer population and mild winters.
"We have a huge deer population that supports ticks, and I think anaplasmosis has established itself in the area," Jobe said.
"It's a little too early to say if anaplasmosis will be as common as Lyme, but there is a growing concern it could become problematic," he said.
Posted in News, Local, Govt-and-politics, State-and-regional on Monday, September 7, 2009 12:05 am Updated: 11:56 pm. | Tags: Ticks
Be well!
Richard
By TERRY RINDFLEISCH | trindfleisch@lacrossetribune.com | Posted: Monday, September 7, 2009 12:05 am |
What is it? Anaplasmosis is a tick-borne disease caused by a species of bacteria called Anaplasma phagocytophilum. It was previously known as human granulocytic ehrlichiosis (HGE) and later as human granulocytic anaplasmosis (HGA).
How do people get it? Anaplasmosis is transmitted to humans by tick bites primarily from the blacklegged tick (Ixodes scapularis) in the eastern United States and the western blacklegged tick (Ixodes pacificus) in the western United States. Of the four distinct phases in the tick life-cycle (egg, larvae, nymph, adult), nymphal and adult ticks are most frequently associated with transmission of anaplasmosis to humans.
Where do most cases occur? About 600 to 800 cases of anaplasmosis are reported to Centers for Disease Control and Prevention each year. States reporting the highest incidence of anaplasmosis in 2006 were Minnesota, Wisconsin, New York, New Jersey and Connecticut.
La Crosse area health officials are seeing more cases of a new tick-borne infection carried by the same deer tick that causes Lyme disease.
Gundersen Lutheran researchers have been monitoring anaplasmosis the last three years and report 50 human cases in the La Crosse area.
The researchers have developed a test for the disease and have been testing blood samples in Gundersen Lutheran Medical Foundation's microbiology laboratories at the La Crosse Health Science Center.
"It is an emerging infection in this area," said Dean Jobe, researcher and supervisor of Gundersen Lutheran's laboratories. "In collecting ticks, we have found it in 10 to 15 percent of the ticks."
Only a few years ago, the disease was rare in the La Crosse area, he said.
"It is mimicking early Lyme," Jobe said. "We used to say we couldn't find ticks with Lyme south of I-90, and now we see plenty of ticks, and the same is happening with anaplasmosis."
Unlike Lyme, anaplasmosis is an infection of the white blood cells, he said. Lyme disease is primarily a skin infection that gets
into the bloodstream and spreads into the joints, Jobe said.
"We've seen an increase in anaplasmosis over the last couple years, but particularly more this year," said Dr. Todd Kowalski, a Gundersen Lutheran physician specializing in infectious diseases. "It's been on our radar for 15 years or more with cases in northern Wisconsin, but the last few years it has been emerging in our area."
Kowalski said symptoms are similar to Lyme such as fever, headache and body aches, but people don't get a rash with anaplasmosis.
"It's not a subtle disease," Kowalski said. "Most people feel worse, and it's a little bit more abrupt than Lyme with perhaps a higher fever and more severe headache and body aches.
"With anaplasmosis, patients don't wait as long to see their physician or go to urgent care or the ER," he said. "But it is a very treatable disease. "
Kowalski said anaplasmosis is treated the same way as Lyme with a tetracycline antibiotic.
"What's rewarding is when patients are put on antibiotics, within 24 to 36 hours they feel a lot better," he said.
He also said prevention measures and the tick season from early spring to late fall are the same for both diseases. Kowalski said the same person can get the two infections at the same time.
He said most La Crosse area primary care, urgent care and emergency medicine physicians are aware of anaplasmosis.
Gundersen Lutheran has conducted research on the disease and developed an accurate molecular test which detects a gene unique to the organism and it can be done rapidly, Jobe said.
He said Gundersen Lutheran also is studying the best time to use the test in the course of the disease.
Jobe said the number of Lyme cases has continued to rise every year due to a bigger deer population and mild winters.
"We have a huge deer population that supports ticks, and I think anaplasmosis has established itself in the area," Jobe said.
"It's a little too early to say if anaplasmosis will be as common as Lyme, but there is a growing concern it could become problematic," he said.
Posted in News, Local, Govt-and-politics, State-and-regional on Monday, September 7, 2009 12:05 am Updated: 11:56 pm. | Tags: Ticks
Sunday, August 9, 2009
A Classic Case of Lyme disease
Hi everyone,
What a great weekend for good articles concerning Lyme disease. This is a story that is familiar with many who are battling this disease. This one one comes from California. Pamela O'Kane knows what it is like to have Lyme disease. Enjoy this story of courage and perserverence.
Be well,
Richard
(Begin Article)
Triumph of her will
smcmanis@sacbee.com
Published Sunday, Aug. 09, 2009
She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.
Yeah, Pamela O'Kane was determined – stubbornly so – to get back to normal life after another stay at the hospital. This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.
O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease – a potentially debilitating infection transmitted by ticks – at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But three times the test for Lyme disease came back negative.
Which frustrated O'Kane to no end. Here was this perfectly healthy woman – a national-qualifying age-group triathlete, no less – rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.
Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.
Negative, negative, negative.
One doctor even suggested anti-depressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."
Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's mother, Virginia Wilbur, and her older sister Denise Wilbur DeTrano that O'Kane's condition would only worsen, and a wheelchair was advisable.
"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."
O'Kane had other ideas. During the hospital stay, she had read a story in The Bee about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.
"Pamela, you can't even walk across the hallway," Denise told her. "What makes you think you can climb Half Dome?"
"I will," O'Kane said tersely.
A year later, she and Denise had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.
But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.
Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.
It involved long-term antibiotic treatment – open-ended, depending on her response to it – through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology.
In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.
Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.
"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."
O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.
She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.
What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?
That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "
About two weeks off the medication, she called her sister.
"She said that her feet were turning in – foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."
After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."
Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.
She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.
Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.
"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent (accurate). The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "
O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.
"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.
She's learned to deal with the new normal.
"I seem to have a high sensitivity for odors," she says, explaining her current state of health. "If somebody's mowing their lawn, I'll start to moan.
"It's strange, I know. And changes in temperature, going from really hot to really cold will set off facial tics and moaning.
"When I first started getting back to triathlon, getting in the water, I'd start to tremor. Every morning, just putting my hands under the water to wash blueberries, it'll set off the shakes. It's embarrassing, but I've learned to cope."
MORE INFO
According to the Centers for Disease Control and Prevention, California's Lyme disease cases amounted in 2007 to only 0.2 per 100,000 residents. The disease is most prevalent on the East Coast but has been detected in 56 of California's 58 counties.
• What causes Lyme disease: It is transmitted by infected ticks carrying the bacterium spirochete. The ticks attach to human skin and feed on the blood supply.
• Early symptoms: Mild flu-like symptoms, usually accompanied by a red, expanding skin rash. Turns into chills, fever, headaches, swollen lymph nodes, muscle and joint pain, fatigue and heart irregularities. The rash can appear up to 30 days after the bite. Some patients report never finding a rash.
• Long-term symptoms: Arthritis and central nervous system disruption that can result in tremors and spasms, chronic fatigue, facial paralysis, numbness and tingling in the limbs, inability to concentrate.
• How to avoid Lyme disease: Stay in the middle of trails, avoiding grassy areas and contact with logs, tree trunks and fallen branches in forests. Tuck your pants into boots or socks and your shirt into pants. Use a repellent, such as DEET, made to combat ticks. Check yourself thoroughly immediately after hiking and up to three days afterward.
• How to remove ticks: Using tweezers, grasp the tick's mouthparts as close to the skin as possible and gently pull the tick straight out. Wash your hands and the bite site with soap and water. Apply antiseptic to the site.
Source: California Department of Public Health, Division of Communicable Disease Control
(End Article)
Thanks to the Sacramento Bee Newspaper for this article!
What a great weekend for good articles concerning Lyme disease. This is a story that is familiar with many who are battling this disease. This one one comes from California. Pamela O'Kane knows what it is like to have Lyme disease. Enjoy this story of courage and perserverence.
Be well,
Richard
(Begin Article)
Triumph of her will
smcmanis@sacbee.com
Published Sunday, Aug. 09, 2009
She wouldn't use the wheelchair. Anything but that. The bulky walker was bad enough, but at least she could retain a semblance of her former mobility.
Yeah, Pamela O'Kane was determined – stubbornly so – to get back to normal life after another stay at the hospital. This one lasted 10 days in the late summer of 2007, and doctors still had no definitive diagnosis to explain and treat the uncontrolled, episodic spasms in her legs and arms, the partial facial paralysis, the weakening of her reflexes and the troubling 35-pound weight loss.
O'Kane, a 48-year-old instructor at California State University, Sacramento, suspected that she had somehow contracted Lyme disease – a potentially debilitating infection transmitted by ticks – at some point in 2006. All the symptoms were there, and her Lyme disease specialist detected two co-infections that usually accompany the disease. But three times the test for Lyme disease came back negative.
Which frustrated O'Kane to no end. Here was this perfectly healthy woman – a national-qualifying age-group triathlete, no less – rendered nearly an invalid who could barely stand up to conduct her teacher education classes without succumbing to fatigue, breathing problems and spasms.
Specialists had tested her for a medical dictionary's worth of maladies. The spinal tap for Lou Gehrig's disease came back negative, as did the scan for multiple sclerosis. She saw her gynecologist for a cervical cancer test, a pulmonary specialist for a lung cancer screening, neurologists for all types of central nervous system disorders.
Negative, negative, negative.
One doctor even suggested anti-depressants, thinking O'Kane was suffering from psychological problems. O'Kane, however, knew the problem was in her central nervous system, not "all in my head."
Still, just before this latest hospital discharge, the neurologist at the hospital told O'Kane's mother, Virginia Wilbur, and her older sister Denise Wilbur DeTrano that O'Kane's condition would only worsen, and a wheelchair was advisable.
"They told me I was going to be disabled," O'Kane recalls. "They said it would get progressively worse."
O'Kane had other ideas. During the hospital stay, she had read a story in The Bee about women climbing Half Dome, that 2,000-foot-high granite monolith in Yosemite, and she vowed to do it herself within a year.
"Pamela, you can't even walk across the hallway," Denise told her. "What makes you think you can climb Half Dome?"
"I will," O'Kane said tersely.
A year later, she and Denise had reached the goal, arms raised atop the granite slab. Just for good measure, the pair ascended Half Dome again this summer.
But O'Kane says it took more than dedication and grit to get her body back close to pre-illness shape.
Rather, she had to put aside her skepticism and commit fully to a controversial Lyme disease treatment plan that she had hesitated to enter because she technically had never been diagnosed.
It involved long-term antibiotic treatment – open-ended, depending on her response to it – through an IV line implanted in her left arm. This goes against standard treatment recommended by three medical organizations: the Infectious Disease Society of America, the Centers for Disease Control and Prevention, and the American Academy of Neurology.
In a 2007 study published in the journal Neurology, researchers found that for patients with neuroborreliosis (Lyme disease that affects the nervous system), the treatment was effective only during a 14- to 28-day window. Long-term use of antibiotics has been linked to side effects such as blood clots, bloodstream infections and diarrhea.
Yet many Lyme patients (and those, like O'Kane, who exhibited symptoms but were not officially diagnosed) report that a six- to eight-month regimen of antibiotics helped them. And San Francisco physician Raphael Stricker, who has treated 1,800 Lyme disease patients, says he's seen patients cured by long-term antibiotic use.
"For patients with persistent symptoms based on persistent infection, unless they're treated long-term with antibiotics, they aren't going to get better," says Stricker, who did not treat O'Kane. "There is a lot of evidence from animal and human studies that there is persistence in infection (with Lyme), and the only way to get rid of it is long-term antibiotics."
O'Kane knew that prolonged use of antibiotics could be harmful, but she also knew that it was effective.
She underwent six months of treatment from January to July 2007. While taking the drug, she still had hand and facial tremors and had yet to gain back weight, but the severity was greatly diminished, and O'Kane could go about teaching and participating in triathlons.
What gnawed at her, though, was the fact that she'd never been diagnosed with Lyme. All those negative tests couldn't be wrong, could they?
That summer, she says, "I decided to take myself off it and detox. I wanted to try this on my own. Everyone told me, no, no, no. But I said, 'This is it.' "
About two weeks off the medication, she called her sister.
"She said that her feet were turning in – foot drop like people with cerebral palsy have," DeTrano recalls. "Fifteen minutes later, she calls me and says, 'I can't walk.' I had to go and carry her into the ER."
After that prolonged hospital stay, the one in which neurologists said she might be permanently disabled, O'Kane was eager to go back on antibiotics. She recalls being in the Lyme specialist's office, and her feet were spastically moving so much "it was like I was tap-dancing on the floor."
Even with just the initial dose of antibiotics coursing through her system, O'Kane said she felt better. She tossed aside the walker and never used it again. Not long thereafter, she was running, swimming and biking.
She regained her strength and stamina, if not all the weight she lost. Still, through rehab with a personal trainer that includes weight training, O'Kane has 12 pounds of muscle mass, according to her latest hydrostatic weight test.
Ironically, after feeling better, O'Kane finally tested positive for Lyme in January 2008.
"She's a classic case," Stricker says. "The commercial testing for Lyme is, in a word, terrible. They miss more than half the cases. Compare that to the sensitivity of AIDS testing, which is 99.5 percent (accurate). The tendency is for doctors to say, 'I guess you don't have Lyme disease. It must be something else.' "
O'Kane just seems happy to have finally cleared the major health hurdle. Now back to running seven-minute miles and churning on the bike, O'Kane believes exercise has hastened her recovery. But she admits that she still has problems, episodic tremors mostly.
"It's like somebody who suffers a stroke and recovers, but only to a certain point," she says.
She's learned to deal with the new normal.
"I seem to have a high sensitivity for odors," she says, explaining her current state of health. "If somebody's mowing their lawn, I'll start to moan.
"It's strange, I know. And changes in temperature, going from really hot to really cold will set off facial tics and moaning.
"When I first started getting back to triathlon, getting in the water, I'd start to tremor. Every morning, just putting my hands under the water to wash blueberries, it'll set off the shakes. It's embarrassing, but I've learned to cope."
MORE INFO
According to the Centers for Disease Control and Prevention, California's Lyme disease cases amounted in 2007 to only 0.2 per 100,000 residents. The disease is most prevalent on the East Coast but has been detected in 56 of California's 58 counties.
• What causes Lyme disease: It is transmitted by infected ticks carrying the bacterium spirochete. The ticks attach to human skin and feed on the blood supply.
• Early symptoms: Mild flu-like symptoms, usually accompanied by a red, expanding skin rash. Turns into chills, fever, headaches, swollen lymph nodes, muscle and joint pain, fatigue and heart irregularities. The rash can appear up to 30 days after the bite. Some patients report never finding a rash.
• Long-term symptoms: Arthritis and central nervous system disruption that can result in tremors and spasms, chronic fatigue, facial paralysis, numbness and tingling in the limbs, inability to concentrate.
• How to avoid Lyme disease: Stay in the middle of trails, avoiding grassy areas and contact with logs, tree trunks and fallen branches in forests. Tuck your pants into boots or socks and your shirt into pants. Use a repellent, such as DEET, made to combat ticks. Check yourself thoroughly immediately after hiking and up to three days afterward.
• How to remove ticks: Using tweezers, grasp the tick's mouthparts as close to the skin as possible and gently pull the tick straight out. Wash your hands and the bite site with soap and water. Apply antiseptic to the site.
Source: California Department of Public Health, Division of Communicable Disease Control
(End Article)
Thanks to the Sacramento Bee Newspaper for this article!
It's Those Deer Ticks Again!!
Hi friends,
I found this article in the Centre View-Southern Edition Newspaper in Centreville, Va. As always I have included the full text so you can see how this community is dealing with ticks and Lyme disease. More and more communities have become involved in teaching and training their citizens about taking precautions when it comes to tick bites. The author Reed S. Albers does a great job in telling the story. I hope you will find it informative and enjoyable to read as I did.
Be well,
Richard
(Begin Article)
Victims Share Stories on Lyme Disease Effects
Panel of experts recommends precautions.
By Reed S. Albers
Friday, August 07, 2009
Mosquito and tick bites are common nuisances for those who enjoy outdoor activities in the summer, but as Manassas resident Becky Pannenton, 52, learned earlier this year, those annoying bug bites can lead to severe health problems.
"I just found out on March 6 this year that I had [Lyme disease]," she said. "I’ve had it for more than 18 years without even knowing. "
Pannenton and other Lyme disease sufferers listened as elected officials, county scientists and representatives of Lyme disease advocacy groups held a town hall meeting on July 22 in the Centreville High School auditorium to educate citizens about the disease.
LYME DISEASE historically hasn’t been a major issue for the Fairfax County area and is most commonly experienced in the northeastern United States. With approximately 400 new cases reported in Fairfax County last two years, panelists agreed it is time to take preventative action.
"One of the steps I’ve taken to raising awareness is scheduling multiple meetings about this issue," said Supervisor Pat Herrity (R-Springfield). "There’s been a doubling of Lyme disease cases in the county. My wife [was bitten by a tick] but we treated it. Not everyone is as lucky."
Another panelist, Fairfax County Health Department Supervisor Jorge Arias, who has a doctorate in entomology, said that in 2008, 13.56 percent of black-legged ticks in the county tested positive for the bacterium that produces Lyme disease compared with 4.48 percent in 2007.
The bacterium that causes Lyme disease, Borrelia burgdorferi, is carried by black- legged ticks, also known as deer ticks, and transferred to humans through a bite contracted while outdoors.
"[Ticks] wait in the grass for someone to pass by and then crawl up their legs," Arias said. "They don’t jump and it’s hard to tell they are on you. They’re very sneaky."
Early symptoms of Lyme disease include headaches, flu-like symptoms and nausea, but in later stages severe psychological, neurological and sensory ailments can develop such as depression, blurred vision and memory loss.
Deer are the most common culprit for bringing ticks into the neighborhood, Arias said. "There are deer everywhere in this area, deer are the ‘Metro’ system for ticks," he said.
Besides offering Lyme disease information, panelists also discussed preventative measures. Vicki Monroe, Fairfax County wildlife biologist, offered tips for combating ticks.
"Keep your grass short and free of leaf litter, and keep playground equipment away from the yard’s edge and trees," she said. "Always wear insect repellent, dress in long clothing when traveling through the woods and stick to the main trails."
Another preventative measure is to check your body daily for ticks. "Whenever you go out, check your body for ticks," Arias said. "You’re either looking for a new freckle, or a new one with legs."
If there is a tick on one’s body, remove by gently pulling it out with tweezers. "There’s old wives tales about using lighters, cigarettes and alcohol [to remove ticks]," Arias said. "They aren’t true. Just use the tweezers."
The local health department or veterinarian can test the tick for Lyme disease for free, panelists said.
EVEN ONE’S FOUR-LEGGED friends are at risk, panelists said. Pets should be equipped with flea collars and have their fur checked regularly for ticks.
For those who do contract Lyme disease, the experience can be painful and frustrating. Lyme disease is a controversial topic as some physicians do not believe that it is the cause of extreme symptoms.
"No other disease has ever caused such a divide in the medical community," said panelist Debbie McCabe, director of pediatric and family wellness at the National Integrated Health Associates in Washington, D.C. "It is the great imitator and can cause multiple symptoms that baffle physicians."
Even the circular bite mark that is left behind by a tick can be misleading. "Some think they have ringworm, but it turns out to be Lyme," McCabe said.
Adding to the confusion is that Lyme disease screening is not accurate. The most common test, the enzyme-linked immunoassay test (ELISA), misses 35 percent of cases in the screening process, McCabe said.
For some, the effects of misdiagnosis can lead to years of unnecessary suffering.
"In the early ‘80s no one knew about [Lyme disease]," said Pannenton, whose 18-year misdiagnosis led to severe medical problems. "It started out with flu-like symptoms and then fatigue, then the headaches and dizziness came in," she said. "I suggested I had Lyme disease to my rheumatologist but he wouldn’t discuss it with me."
Loudoun County resident Sharon Payne, 43, has suffered from chronic Lyme disease since 2005, and has found few treatments that help with her chronic body aches.
"In 2005, I was on an antibiotic treatment [for Lyme disease] that made me lose 35 pounds," she said. "I decided that wasn’t the best treatment for me. I now use cold laser therapy. It’s the same treatment that was used to treat [cyclist] Lance Armstrong [for cancer]."
Lyme disease can be treated, but there isn’t a universal treatment method for those who did not detect the disease in its early stages, McCabe said.
VARIOUS OUTREACH groups also are available for those dealing with chronic Lyme disease.
Panelist Monte Skall, executive director of the National Capital Lyme and Tick-Borne Disease Association in McLean (www.natcapLyme.org), shared Information for those seeking help.
"I’ve had Lyme for 18 years and it gets harder and harder to deal with," she said. "I started this group because there was nothing out there for people with this infection. We now how five chapters in Virginia."
Support for those infected with Lyme disease isn’t just coming from advocacy groups but also on Capitol Hill.
Dan Scandling, chief of staff for U.S. Rep. Frank Wolf (R-10), delivered some hopeful news that lobbying efforts are paying off.
"A $6 million increase for the Centers for Disease Control budget will increase Lyme disease research," he said.
What To Do If Bitten?
Step 1: Don't panic.
Step 2: Gently pull the tick straight out by grabbing the tick as close to the skin as possible with tweezers.
Step 3: Place the tick in a bottle or bag labeled with the patient's name, address and date the tick was removed.
Step 4: Have the tick identified and tested by a lab, health department or veterinarian.
Step 5: Seek immediate treatment if tick tests positive for Lyme disease.
Sources: The National Capital Lyme and Tick-Borne Disease Association, Fairfax County Health Department
(End Article)
©2009 Connection Newspapers. All Rights Reserved. Privacy Policy
1606 King Street ♦ Alexandria, VA 22314 ♦ 703-821-5050
I found this article in the Centre View-Southern Edition Newspaper in Centreville, Va. As always I have included the full text so you can see how this community is dealing with ticks and Lyme disease. More and more communities have become involved in teaching and training their citizens about taking precautions when it comes to tick bites. The author Reed S. Albers does a great job in telling the story. I hope you will find it informative and enjoyable to read as I did.
Be well,
Richard
(Begin Article)
Victims Share Stories on Lyme Disease Effects
Panel of experts recommends precautions.
By Reed S. Albers
Friday, August 07, 2009
Mosquito and tick bites are common nuisances for those who enjoy outdoor activities in the summer, but as Manassas resident Becky Pannenton, 52, learned earlier this year, those annoying bug bites can lead to severe health problems.
"I just found out on March 6 this year that I had [Lyme disease]," she said. "I’ve had it for more than 18 years without even knowing. "
Pannenton and other Lyme disease sufferers listened as elected officials, county scientists and representatives of Lyme disease advocacy groups held a town hall meeting on July 22 in the Centreville High School auditorium to educate citizens about the disease.
LYME DISEASE historically hasn’t been a major issue for the Fairfax County area and is most commonly experienced in the northeastern United States. With approximately 400 new cases reported in Fairfax County last two years, panelists agreed it is time to take preventative action.
"One of the steps I’ve taken to raising awareness is scheduling multiple meetings about this issue," said Supervisor Pat Herrity (R-Springfield). "There’s been a doubling of Lyme disease cases in the county. My wife [was bitten by a tick] but we treated it. Not everyone is as lucky."
Another panelist, Fairfax County Health Department Supervisor Jorge Arias, who has a doctorate in entomology, said that in 2008, 13.56 percent of black-legged ticks in the county tested positive for the bacterium that produces Lyme disease compared with 4.48 percent in 2007.
The bacterium that causes Lyme disease, Borrelia burgdorferi, is carried by black- legged ticks, also known as deer ticks, and transferred to humans through a bite contracted while outdoors.
"[Ticks] wait in the grass for someone to pass by and then crawl up their legs," Arias said. "They don’t jump and it’s hard to tell they are on you. They’re very sneaky."
Early symptoms of Lyme disease include headaches, flu-like symptoms and nausea, but in later stages severe psychological, neurological and sensory ailments can develop such as depression, blurred vision and memory loss.
Deer are the most common culprit for bringing ticks into the neighborhood, Arias said. "There are deer everywhere in this area, deer are the ‘Metro’ system for ticks," he said.
Besides offering Lyme disease information, panelists also discussed preventative measures. Vicki Monroe, Fairfax County wildlife biologist, offered tips for combating ticks.
"Keep your grass short and free of leaf litter, and keep playground equipment away from the yard’s edge and trees," she said. "Always wear insect repellent, dress in long clothing when traveling through the woods and stick to the main trails."
Another preventative measure is to check your body daily for ticks. "Whenever you go out, check your body for ticks," Arias said. "You’re either looking for a new freckle, or a new one with legs."
If there is a tick on one’s body, remove by gently pulling it out with tweezers. "There’s old wives tales about using lighters, cigarettes and alcohol [to remove ticks]," Arias said. "They aren’t true. Just use the tweezers."
The local health department or veterinarian can test the tick for Lyme disease for free, panelists said.
EVEN ONE’S FOUR-LEGGED friends are at risk, panelists said. Pets should be equipped with flea collars and have their fur checked regularly for ticks.
For those who do contract Lyme disease, the experience can be painful and frustrating. Lyme disease is a controversial topic as some physicians do not believe that it is the cause of extreme symptoms.
"No other disease has ever caused such a divide in the medical community," said panelist Debbie McCabe, director of pediatric and family wellness at the National Integrated Health Associates in Washington, D.C. "It is the great imitator and can cause multiple symptoms that baffle physicians."
Even the circular bite mark that is left behind by a tick can be misleading. "Some think they have ringworm, but it turns out to be Lyme," McCabe said.
Adding to the confusion is that Lyme disease screening is not accurate. The most common test, the enzyme-linked immunoassay test (ELISA), misses 35 percent of cases in the screening process, McCabe said.
For some, the effects of misdiagnosis can lead to years of unnecessary suffering.
"In the early ‘80s no one knew about [Lyme disease]," said Pannenton, whose 18-year misdiagnosis led to severe medical problems. "It started out with flu-like symptoms and then fatigue, then the headaches and dizziness came in," she said. "I suggested I had Lyme disease to my rheumatologist but he wouldn’t discuss it with me."
Loudoun County resident Sharon Payne, 43, has suffered from chronic Lyme disease since 2005, and has found few treatments that help with her chronic body aches.
"In 2005, I was on an antibiotic treatment [for Lyme disease] that made me lose 35 pounds," she said. "I decided that wasn’t the best treatment for me. I now use cold laser therapy. It’s the same treatment that was used to treat [cyclist] Lance Armstrong [for cancer]."
Lyme disease can be treated, but there isn’t a universal treatment method for those who did not detect the disease in its early stages, McCabe said.
VARIOUS OUTREACH groups also are available for those dealing with chronic Lyme disease.
Panelist Monte Skall, executive director of the National Capital Lyme and Tick-Borne Disease Association in McLean (www.natcapLyme.org), shared Information for those seeking help.
"I’ve had Lyme for 18 years and it gets harder and harder to deal with," she said. "I started this group because there was nothing out there for people with this infection. We now how five chapters in Virginia."
Support for those infected with Lyme disease isn’t just coming from advocacy groups but also on Capitol Hill.
Dan Scandling, chief of staff for U.S. Rep. Frank Wolf (R-10), delivered some hopeful news that lobbying efforts are paying off.
"A $6 million increase for the Centers for Disease Control budget will increase Lyme disease research," he said.
What To Do If Bitten?
Step 1: Don't panic.
Step 2: Gently pull the tick straight out by grabbing the tick as close to the skin as possible with tweezers.
Step 3: Place the tick in a bottle or bag labeled with the patient's name, address and date the tick was removed.
Step 4: Have the tick identified and tested by a lab, health department or veterinarian.
Step 5: Seek immediate treatment if tick tests positive for Lyme disease.
Sources: The National Capital Lyme and Tick-Borne Disease Association, Fairfax County Health Department
(End Article)
©2009 Connection Newspapers. All Rights Reserved. Privacy Policy
1606 King Street ♦ Alexandria, VA 22314 ♦ 703-821-5050
Saturday, August 1, 2009
Lyme "rage", is it real?
Hello friends,
Lyme rage has been a topic much discussed in the media the last few months. For those of us who have Lyme disease I think we can understand how Lyme disease has affected our personality at times. Some of us are more affected than others. However, Lyme "rage" can be a real symptom and all should know about it. This article from ABC News is a good glimpse into the problem. I hope you learn from it.
Be well,
Richard
'Lyme Rage': Can Lyme Disease Affect Your Personality?
Roaming Ticks Can Carry Disease Linked to Physical Problems, Mental Madness
By ELISABETH LEAMY, JOSH GAYNOR and LEE FERRAN
July 30, 2009 —
They're tiny insects that can cause big problems. A rise in the number of ticks this year has infectious disease experts focused on the best way to treat the Lyme disease that the little buggers can spread.
Some 20,000 Americans are infected and treated every year, but countless others go undiagnosed. The illness has symptoms that include fever, fatigue and headaches, but if left untreated, Lyme disease can be more serious.
While there are physical symptoms of the disease that can include severe headaches, severe joint pain and even numbness in the hands or feet, many experts believe Lyme disease can rewire the human brain and affect personality.
"I'm convinced that Lyme in a chronic form can affect psychiatric issues, neurological issues and you can have neurological problems," New York epidemiologist Dr. Daniel Cameron said.
The Center for Disease Control and Prevention notes that up to 5 percent of patients "may develop chronic neurological complaints months to years after infection."
Lyme disease patient Kelly Kulesz told "Good Morning America" she saw herself change overnight because of her infection.
"They put me on stage fright medications," Kulesz said. "Doctors thought it was obsessive compulsive disorder, but it's just not."
When Terry Jo Sedlacek went to trial for allegedly gunning down the Rev. Fred Winters in March, the defense cited his Lyme disease infection and it's contribution to what many call "lyme rage."
But not all experts believe Lyme disease causes such " target="_blank">radical changes in personality.
"The example I like to cite is if I have Lyme disease and I get run over by a truck, the Lyme disease didn't cause my broken leg," Halperin, said Dr. John Halperin, lead author on the new American Academy of Neurology Guideline on Lyme Disease Treatment.
ABC News medical contributor Dr. Marie Savard, who had lyme disease, said that the possibility of personality changes should at least be taken into consideration.
"It does affect the central nervous system. You can have behavior changes, personality changes," she said. "We have to listen and pay attention."
More Information on Lyme Disease
For more information on how to prevent, diagnose and treat Lyme disease, vist the Web sites below.
American Academy of Neurology for Lyme Disease Treatment
Centers for Disease Control and Prevention
Infectious Diseases Society of America
National Institute of Health
National Institute of Health
www.LymeDiseaseAssociation.org
Lyme Disease Foundation: www.lyme.org
Copyright © 2009 ABC News Internet Ventures
Lyme rage has been a topic much discussed in the media the last few months. For those of us who have Lyme disease I think we can understand how Lyme disease has affected our personality at times. Some of us are more affected than others. However, Lyme "rage" can be a real symptom and all should know about it. This article from ABC News is a good glimpse into the problem. I hope you learn from it.
Be well,
Richard
'Lyme Rage': Can Lyme Disease Affect Your Personality?
Roaming Ticks Can Carry Disease Linked to Physical Problems, Mental Madness
By ELISABETH LEAMY, JOSH GAYNOR and LEE FERRAN
July 30, 2009 —
They're tiny insects that can cause big problems. A rise in the number of ticks this year has infectious disease experts focused on the best way to treat the Lyme disease that the little buggers can spread.
Some 20,000 Americans are infected and treated every year, but countless others go undiagnosed. The illness has symptoms that include fever, fatigue and headaches, but if left untreated, Lyme disease can be more serious.
While there are physical symptoms of the disease that can include severe headaches, severe joint pain and even numbness in the hands or feet, many experts believe Lyme disease can rewire the human brain and affect personality.
"I'm convinced that Lyme in a chronic form can affect psychiatric issues, neurological issues and you can have neurological problems," New York epidemiologist Dr. Daniel Cameron said.
The Center for Disease Control and Prevention notes that up to 5 percent of patients "may develop chronic neurological complaints months to years after infection."
Lyme disease patient Kelly Kulesz told "Good Morning America" she saw herself change overnight because of her infection.
"They put me on stage fright medications," Kulesz said. "Doctors thought it was obsessive compulsive disorder, but it's just not."
When Terry Jo Sedlacek went to trial for allegedly gunning down the Rev. Fred Winters in March, the defense cited his Lyme disease infection and it's contribution to what many call "lyme rage."
But not all experts believe Lyme disease causes such " target="_blank">radical changes in personality.
"The example I like to cite is if I have Lyme disease and I get run over by a truck, the Lyme disease didn't cause my broken leg," Halperin, said Dr. John Halperin, lead author on the new American Academy of Neurology Guideline on Lyme Disease Treatment.
ABC News medical contributor Dr. Marie Savard, who had lyme disease, said that the possibility of personality changes should at least be taken into consideration.
"It does affect the central nervous system. You can have behavior changes, personality changes," she said. "We have to listen and pay attention."
More Information on Lyme Disease
For more information on how to prevent, diagnose and treat Lyme disease, vist the Web sites below.
American Academy of Neurology for Lyme Disease Treatment
Centers for Disease Control and Prevention
Infectious Diseases Society of America
National Institute of Health
National Institute of Health
www.LymeDiseaseAssociation.org
Lyme Disease Foundation: www.lyme.org
Copyright © 2009 ABC News Internet Ventures
Thursday, July 23, 2009
What is Ehrlichiosis?
Hello again,
There are many other diseases that can be associated with the dreadful tick bite. Most are very serious and need to be given much attention. Ehrilichiosis is one of these diseases. This is an article from the Glasgow Daily Times by Lisa Strange and it explains the plight of one young mother and her child with this disease. I hope you pay close attention to the symptoms.
Be well,
Richard
Boy overcomes tick-borne illness
By LISA SIMPSON STRANGE
Glasgow Daily Times
GLASGOW July 22, 2009 10:44 am
— One local mother hopes she can help keep other parents and their children from going through what she and her son faced recently.
Valerie Lewis found a tick on her son, Parker, 2, on Father’s Day. She removed it and didn’t really think anything else about it.
Three days later, Parker had developed a high fever and was lethargic.
Valerie took her son to her local family physician, Dr. David German, who checked Parker’s tonsils and ears, but couldn’t find an immediate source of infection. He told her to wait a day and see if there were any changes.
Parker’s high fever and lethargy continued the next day and he had a febrile seizure, which consists of convulsions brought on by a fever in infants and small children.
Valerie took Parker to the emergency room at T.J. Samson Community Hos-pital and he was admitted.
Parker was given Doxocycline, an antibiotic, but his white blood cell count kept dropping and Dr. German realized there was “something different about this one.”
Parker was diagnosed with Ehrlichiosis, an illness carried by the Lone Star tick that is found in the southeastern United States.
He was treated at the local hospital for two days, but was not showing improvement.
The boy’s white cell count continued to decrease from 3,500 to 2,000 to 800, according to German, so the decision was made to send Parker to Vanderbilt Hospital, the Monroe Carell Jr. Children’s Hospital, in Nashville.
After Parker arrived at Vandy, he began to bounce back and was released after two more days of treatment there.
“It took four days to get as bad as he was going to get,” Valerie said. “After that he started bouncing back.”
Parker has now completely recovered with no lasting ill effects or organ damage.
“The doctors at Vanderbilt told me that Ehrlichiosis is especially bad this year in Tennessee and Kentucky, up 100-fold from last year,” Valerie said. “ The disease is potentially deadly (two children died from it while Parker was at Vanderbilt). It's important that parents think about tick bites if their child has an unexplained high fever in the summer with low white blood cell counts.
Valerie said doctors in Tennessee attributed German with quick thinking that helped Parker’s case be resolved with a positive outcome.
“He is the reason. They said Dr. German did everything exactly right,” Valerie said.
“I was just doing my job,” German said.
The thing to take away from all this, he said, is in the summertime, if a child 8 or younger has an unexplained fever of 104 degrees or higher that is not going away and a white cell count that keeps dropping, parents and physicians need to think about tick bites as a possible cause of the illness.
Other than that, German was humble about his discovery of the right diagnosis in Parker’s case.
“Praise the Lord he got better,” he said. “God puts those ideas in your mind at the right time.”
What is Ehrlichiosis?
Ehrlichiosis is the general name used to describe several bacterial diseases that affect animals and humans. These diseases are caused by the organisms in the genus Ehrlichia. In the United States, there are currently two ehrlichial species that are known to cause disease in humans: Ehrlichia chaffeensis and Ehrlichia ewingii. Ehrlichia chaffeensis causes human ehrlichiosis also described as human monocytic ehrlichiosis (HME). In addition, human infections with Ehrlichia ewingii have also been documented.
How do people get ehrlichiosis?
In the United States, ehrlichiae are transmitted by the bite of an infected tick. The lone star tick (Amblyomma americanum) is the primary vector of both Ehrlichia chaffeensis and Ehrlichia ewingii in the United States.
What are the symptoms of ehrlichiosis?
The symptoms of ehrlichiosis may resemble symptoms of various other infectious and non-infectious diseases. The initial signs and symptoms generally include:
* fever
* headache
* fatigue
* muscle aches
Other signs and symptoms may include:
* nausea
* vomiting
* diarrhea
* cough
* joint pains
* confusion
* occasionally rash
Symptoms typically appear after an incubation period of 5-10 days following the tick bite. It is possible that many individuals who become infected with ehrlichiae do not become ill or they develop only very mild symptoms.
Copyright © 1999-2008 cnhi, inc.
There are many other diseases that can be associated with the dreadful tick bite. Most are very serious and need to be given much attention. Ehrilichiosis is one of these diseases. This is an article from the Glasgow Daily Times by Lisa Strange and it explains the plight of one young mother and her child with this disease. I hope you pay close attention to the symptoms.
Be well,
Richard
Boy overcomes tick-borne illness
By LISA SIMPSON STRANGE
Glasgow Daily Times
GLASGOW July 22, 2009 10:44 am
— One local mother hopes she can help keep other parents and their children from going through what she and her son faced recently.
Valerie Lewis found a tick on her son, Parker, 2, on Father’s Day. She removed it and didn’t really think anything else about it.
Three days later, Parker had developed a high fever and was lethargic.
Valerie took her son to her local family physician, Dr. David German, who checked Parker’s tonsils and ears, but couldn’t find an immediate source of infection. He told her to wait a day and see if there were any changes.
Parker’s high fever and lethargy continued the next day and he had a febrile seizure, which consists of convulsions brought on by a fever in infants and small children.
Valerie took Parker to the emergency room at T.J. Samson Community Hos-pital and he was admitted.
Parker was given Doxocycline, an antibiotic, but his white blood cell count kept dropping and Dr. German realized there was “something different about this one.”
Parker was diagnosed with Ehrlichiosis, an illness carried by the Lone Star tick that is found in the southeastern United States.
He was treated at the local hospital for two days, but was not showing improvement.
The boy’s white cell count continued to decrease from 3,500 to 2,000 to 800, according to German, so the decision was made to send Parker to Vanderbilt Hospital, the Monroe Carell Jr. Children’s Hospital, in Nashville.
After Parker arrived at Vandy, he began to bounce back and was released after two more days of treatment there.
“It took four days to get as bad as he was going to get,” Valerie said. “After that he started bouncing back.”
Parker has now completely recovered with no lasting ill effects or organ damage.
“The doctors at Vanderbilt told me that Ehrlichiosis is especially bad this year in Tennessee and Kentucky, up 100-fold from last year,” Valerie said. “ The disease is potentially deadly (two children died from it while Parker was at Vanderbilt). It's important that parents think about tick bites if their child has an unexplained high fever in the summer with low white blood cell counts.
Valerie said doctors in Tennessee attributed German with quick thinking that helped Parker’s case be resolved with a positive outcome.
“He is the reason. They said Dr. German did everything exactly right,” Valerie said.
“I was just doing my job,” German said.
The thing to take away from all this, he said, is in the summertime, if a child 8 or younger has an unexplained fever of 104 degrees or higher that is not going away and a white cell count that keeps dropping, parents and physicians need to think about tick bites as a possible cause of the illness.
Other than that, German was humble about his discovery of the right diagnosis in Parker’s case.
“Praise the Lord he got better,” he said. “God puts those ideas in your mind at the right time.”
What is Ehrlichiosis?
Ehrlichiosis is the general name used to describe several bacterial diseases that affect animals and humans. These diseases are caused by the organisms in the genus Ehrlichia. In the United States, there are currently two ehrlichial species that are known to cause disease in humans: Ehrlichia chaffeensis and Ehrlichia ewingii. Ehrlichia chaffeensis causes human ehrlichiosis also described as human monocytic ehrlichiosis (HME). In addition, human infections with Ehrlichia ewingii have also been documented.
How do people get ehrlichiosis?
In the United States, ehrlichiae are transmitted by the bite of an infected tick. The lone star tick (Amblyomma americanum) is the primary vector of both Ehrlichia chaffeensis and Ehrlichia ewingii in the United States.
What are the symptoms of ehrlichiosis?
The symptoms of ehrlichiosis may resemble symptoms of various other infectious and non-infectious diseases. The initial signs and symptoms generally include:
* fever
* headache
* fatigue
* muscle aches
Other signs and symptoms may include:
* nausea
* vomiting
* diarrhea
* cough
* joint pains
* confusion
* occasionally rash
Symptoms typically appear after an incubation period of 5-10 days following the tick bite. It is possible that many individuals who become infected with ehrlichiae do not become ill or they develop only very mild symptoms.
Copyright © 1999-2008 cnhi, inc.
Sunday, July 19, 2009
Sick from a tick.....another story about Lyme disease
Hi again everyone.
It is time to talk about Lyme disease. Below is a fabulous article from a woman who struggled being diagnosed with Lyme disease. She was forced to do a lot of research on her own and took charge of her medical care. She was finally diagnosed with Lyme disease and Bartonella. Please take time and read her personal struggle. She is another victim of this terrible disease and her story mimics the story of hundreds of Lyme patients.
Be Well,
Rich Bowman
Cover Story - Friday, July 17, 2009from the Dannville Weekly.com
So sick from a tick
'Lyme disease could happen to you,' warns Diablo woman
by Sue Savod
It comes from a tick and it's on the East coast - isn't that what most people know about Lyme disease? And what's that got to do with us here in California? A lot. Because the fact is that Northern California is one of the most Lyme-infected areas in the U.S.A. I want to scream it from the rooftops! Be careful! We have Lyme disease right here!
In January 2008, I was exhausted and just plain felt sick. I went to my family doctor whom I'd seen maybe five or six times during the previous five years. He's a good doctor. He even asks me what I think is wrong before he checks me out. This time I didn't have a clue. He mentioned "virus" and did blood tests. I even asked to be tested for Lyme - I must have read it somewhere. There were lots of reasons for me to be run down as I had been very busy the fall before with my daughter's wedding and finishing a new house. Christmas did me in.
The tests came back - all normal, no Lyme, but an unusually high ANA, which tests protein, specifically antinuclear antibodies, in your blood. The doctor suspected an autoimmune disease, lupus to be exact, and sent me to a rheumatologist. He was also a good doctor, taught and did research, and he listened. He did some more blood, lungs, heart testing and diagnosed me with a "very rare autoimmune disease" called Mixed Connective Tissue disease. Made sense. Except I didn't have all the symptoms. In fact I only had a couple. He said I'd develop more symptoms in the next 10 years. What?! Something inside me said: "That's not what you have."
I also had had knee problems in the summer of 2006. A swollen sore knee. Doctors said it was my crooked kneecap. One wanted to remove it. Hobbled to another who said, "We have to clip the ligaments and that will do the trick." This one was a good doctor., so I had the operation. Didn't work. Had gel injected behind the kneecap along with a cortisone shot (the worst thing for Lyme). That didn't work either. Said I would need a knee replacement eventually. The swelling came and went.
Lower back ache. Went to the doctor. Recommended physical therapy. Went. Didn't work.
I came home and got on the computer. Thank God for the Internet. Lyme disease. It frequently came up when I put in my symptoms. I read more. And more. Blogs, Web sites. The light slowly went on as I saw myself described. Things I didn't even know were symptoms. Brain fog. No energy. Some joint pains. Swollen ankle. Heel pain. Sore neck. Weight gain. Ribs sore. Lower back pain. Ocular migraines (you get the sparklies without the pain). Calf leg cramps.
Did I have all that? Yes, some were infrequent symptoms I hadn't really even thought about until they were pointed out, and they had appeared slowly over time. I wasn't reading the signals. I didn't know the language of Lyme back then. I had ignored almost everything except the fatigue and the knee. In fact I push through most pain and discomfort without awareness. This new information made me finally stop and take stock.
My dear boyfriend bought me two books on Lyme and their information just about convinced me. I was sure I had Lyme. But where did I get it? When did I get it? I sent for my records from my doctor to see if I could track anything down. I never saw a tick and never had a rash that I could remember. Then I saw that in January 2003, I had gone to my doctor with a flu-like illness and a swollen knee.
Bingo! Those are classic Lyme symptoms. I had begun hiking in the Las Trampas hills right behind my home in Alamo where I lived at the time. And ticks like to cling to grasses and shrubs, so they can jump on any carbon dioxide-emitting creature that comes by. Who knows how many creatures carry Lyme. In California, Lyme is carried by the deer tick, Ixodes pacificus, the Western black legged tick that starts out the size of the period at the end of this sentence. As they mature they grow to about the size of a sesame seed. Deer, squirrels and rats and mice are carriers. They don't get Lyme symptoms. The rest of us do. Tick jumps on carrier, tick bites carrier, tick jumps off. If the carrier is a person, Lyme is transmitted. And new evidence says it only takes four hours of tick attachment for you to get Lyme. If you pull off that tick five hours later, you could have Lyme disease.
One San Francisco doctor's name kept coming up in the blogs and on some Lyme Web sites. I made an appointment and had to wait two months, until August 2008. I was nervous. Was it all in my head? I wasn't that sick. Told him what I thought and, without missing a beat, he agreed and suspected, from my descriptions, that I might have another tick-borne disease as well. I asked to be put on antibiotics right then. Sent my blood to a Lyme-sensitive lab in Palo Alto. Normal lab testing rarely catches Lyme, which is difficult to catch with a blood test anyway. One month later - yes, I had Lyme disease and Bartonella, one of the many co-infections common with Lyme. I was almost relieved. At least it had a name. I had no idea the severity of this disease. I was beginning the journey I am on now.
What they test isn't the Lyme bacteria in your blood, but the antibodies your system creates against it. As you are treated and your immune system gets stronger, you put out more antibodies. So if a test doesn't show Lyme right away, that doesn't mean you don't have it. It may just mean your immune system hasn't produced measurable antibodies. Doctors have to go on what patients describe for now. It's called clinical evidence. Eventually it shows up in the tests.
Met a lady from San Ramon the last time I went to my doctor. She had it - hers was manifested in stomach symptoms - as did her college age daughter, who had two co-infections as well. Hers was nuero-borrealis - she couldn't retain anything she was learning. San Ramon! Alamo! It's right here. In fact my doctor currently treats hundreds - that's HUNDREDS - of Lyme patents, most from here in the Bay Area.
Every parent should be aware of ticks and Lyme; 25 percent of Lyme patients are kids. If you live where deer and squirrels live, then you can get Lyme. Kids should be checked after playing outside. One author described her two sons' bouts with Lyme, both now cured. One was ill for seven years. Couldn't even go to school. They thought he had all kinds of diseases - childhood arthritis, mental problems, eye problems, flu. We need to know! If I got it, you can get it.
Centers for Disease Control says one has to have a bulls eye rash, but more than 50 percent of Lyme patients never see one. This disease is the No. 1 vector-borne disease in the U.S.; we have five times the number of Lyme sufferers as AIDS patients. Why don't we know about it? And why didn't my doctors know about it?
CDC's official line on Lyme long has been controlled by a group of doctors, Infectious Disease Society of America (IDSA). They have a narrow definition of Lyme - just rashes and joint problems - completely ignoring the brain symptoms, the stomach problems, the rest of the Lyme symptoms that masquerade as other diseases. Lyme is a very difficult disease to diagnose, but if I could diagnose myself off the Internet, then why isn't my doctor getting the information he needs? Doctors now doing research are too few and far between, and are mostly doing it without financial help. I've found that these doctors had Lyme at one time and that's how they became interested.
One M.D. was diagnosed with advanced multiple sclerosis. He read about Lyme, went to a Lyme-literate doctor and is now cured and doing research. Lyme mimics a lot of diseases - multiple sclerosis, Parkinson's, Lou Gherig's disease, fibromyalgia, chronic fatigue, lupus - my doctor said I would be surprised at the number of cases of "lupus" he has cured. There was even a test of cadaver brains from the Alzheimer's Association and seven out of 10 had the Lyme bacteria. Mine masqueraded as an autoimmune disease.
How many other "diseases" are Lyme? Without informed doctors and better tests we will never know. This is a huge problem that keeps thousands of Americans ill and out of work. Insurance companies won't pay for Lyme, but go along with doctors who deny that chronic Lyme exists. Lyme disease doesn't go away. It grows and debilitates. And it can kill. I was lucky to find mine after only five years. Most patients go seven years and to scores of doctors before they are diagnosed - if they are diagnosed at all. Lyme caught right away takes only about two months of antibiotics to cure. But most Lyme is misdiagnosed. So chronic Lyme can take years to treat. Why don't the insurance companies realize this?
Because Lyme is a bacteria, albeit a virulent one, antibiotics work against it. You start treatment, you get worse, you get better, you get worse - the bacteria's cycle seems to be every four weeks. It's a nasty bug. Some people, not knowing, start the antibiotics and get really sick within a few days - it's called the Herxheimer effect - so they stop their antibiotics. Big mistake. Because Lyme is intracellular and extracellular, it is often treated with two different antibiotics. Some people who don't have a good immune system are critically ill right away. They may require intravenous antibiotics and medical support. And if you have a co-infection, it has to be killed before the Lyme can be treated effectively.
If I got another tick bite, I would find myself a doctor who would treat me immediately, THAT DAY. I fully intend to be cured. After I started treatment, I was fairly sick for a time but just recently I have had the best three weeks in several years. This reminded me how I can feel again. I was lucky to find a doctor who is a member of the International Lyme and Associated Diseases Society (ILADS). These wonderful, true scientists are a growing group of Lyme-literate doctors who keep in touch with each other to combine their acquired knowledge gained through experience to recommend treatment for Lyme.
I know way more than I ever wanted to about Lyme and this is just the short version. I have been researching and reading and learning. I know this: If we don't start paying attention to this disease, it can become an epidemic - or has it already?
Sue Savod is now living in Diablo and taking her antibiotics. She is focusing on her career in animal portraits while regaining her health. Contact her at susavod@comcast.net.
Find this article at:
http://www.DanvilleWeekly.com/story.php?story_id=6347
It is time to talk about Lyme disease. Below is a fabulous article from a woman who struggled being diagnosed with Lyme disease. She was forced to do a lot of research on her own and took charge of her medical care. She was finally diagnosed with Lyme disease and Bartonella. Please take time and read her personal struggle. She is another victim of this terrible disease and her story mimics the story of hundreds of Lyme patients.
Be Well,
Rich Bowman
Cover Story - Friday, July 17, 2009from the Dannville Weekly.com
So sick from a tick
'Lyme disease could happen to you,' warns Diablo woman
by Sue Savod
It comes from a tick and it's on the East coast - isn't that what most people know about Lyme disease? And what's that got to do with us here in California? A lot. Because the fact is that Northern California is one of the most Lyme-infected areas in the U.S.A. I want to scream it from the rooftops! Be careful! We have Lyme disease right here!
In January 2008, I was exhausted and just plain felt sick. I went to my family doctor whom I'd seen maybe five or six times during the previous five years. He's a good doctor. He even asks me what I think is wrong before he checks me out. This time I didn't have a clue. He mentioned "virus" and did blood tests. I even asked to be tested for Lyme - I must have read it somewhere. There were lots of reasons for me to be run down as I had been very busy the fall before with my daughter's wedding and finishing a new house. Christmas did me in.
The tests came back - all normal, no Lyme, but an unusually high ANA, which tests protein, specifically antinuclear antibodies, in your blood. The doctor suspected an autoimmune disease, lupus to be exact, and sent me to a rheumatologist. He was also a good doctor, taught and did research, and he listened. He did some more blood, lungs, heart testing and diagnosed me with a "very rare autoimmune disease" called Mixed Connective Tissue disease. Made sense. Except I didn't have all the symptoms. In fact I only had a couple. He said I'd develop more symptoms in the next 10 years. What?! Something inside me said: "That's not what you have."
I also had had knee problems in the summer of 2006. A swollen sore knee. Doctors said it was my crooked kneecap. One wanted to remove it. Hobbled to another who said, "We have to clip the ligaments and that will do the trick." This one was a good doctor., so I had the operation. Didn't work. Had gel injected behind the kneecap along with a cortisone shot (the worst thing for Lyme). That didn't work either. Said I would need a knee replacement eventually. The swelling came and went.
Lower back ache. Went to the doctor. Recommended physical therapy. Went. Didn't work.
I came home and got on the computer. Thank God for the Internet. Lyme disease. It frequently came up when I put in my symptoms. I read more. And more. Blogs, Web sites. The light slowly went on as I saw myself described. Things I didn't even know were symptoms. Brain fog. No energy. Some joint pains. Swollen ankle. Heel pain. Sore neck. Weight gain. Ribs sore. Lower back pain. Ocular migraines (you get the sparklies without the pain). Calf leg cramps.
Did I have all that? Yes, some were infrequent symptoms I hadn't really even thought about until they were pointed out, and they had appeared slowly over time. I wasn't reading the signals. I didn't know the language of Lyme back then. I had ignored almost everything except the fatigue and the knee. In fact I push through most pain and discomfort without awareness. This new information made me finally stop and take stock.
My dear boyfriend bought me two books on Lyme and their information just about convinced me. I was sure I had Lyme. But where did I get it? When did I get it? I sent for my records from my doctor to see if I could track anything down. I never saw a tick and never had a rash that I could remember. Then I saw that in January 2003, I had gone to my doctor with a flu-like illness and a swollen knee.
Bingo! Those are classic Lyme symptoms. I had begun hiking in the Las Trampas hills right behind my home in Alamo where I lived at the time. And ticks like to cling to grasses and shrubs, so they can jump on any carbon dioxide-emitting creature that comes by. Who knows how many creatures carry Lyme. In California, Lyme is carried by the deer tick, Ixodes pacificus, the Western black legged tick that starts out the size of the period at the end of this sentence. As they mature they grow to about the size of a sesame seed. Deer, squirrels and rats and mice are carriers. They don't get Lyme symptoms. The rest of us do. Tick jumps on carrier, tick bites carrier, tick jumps off. If the carrier is a person, Lyme is transmitted. And new evidence says it only takes four hours of tick attachment for you to get Lyme. If you pull off that tick five hours later, you could have Lyme disease.
One San Francisco doctor's name kept coming up in the blogs and on some Lyme Web sites. I made an appointment and had to wait two months, until August 2008. I was nervous. Was it all in my head? I wasn't that sick. Told him what I thought and, without missing a beat, he agreed and suspected, from my descriptions, that I might have another tick-borne disease as well. I asked to be put on antibiotics right then. Sent my blood to a Lyme-sensitive lab in Palo Alto. Normal lab testing rarely catches Lyme, which is difficult to catch with a blood test anyway. One month later - yes, I had Lyme disease and Bartonella, one of the many co-infections common with Lyme. I was almost relieved. At least it had a name. I had no idea the severity of this disease. I was beginning the journey I am on now.
What they test isn't the Lyme bacteria in your blood, but the antibodies your system creates against it. As you are treated and your immune system gets stronger, you put out more antibodies. So if a test doesn't show Lyme right away, that doesn't mean you don't have it. It may just mean your immune system hasn't produced measurable antibodies. Doctors have to go on what patients describe for now. It's called clinical evidence. Eventually it shows up in the tests.
Met a lady from San Ramon the last time I went to my doctor. She had it - hers was manifested in stomach symptoms - as did her college age daughter, who had two co-infections as well. Hers was nuero-borrealis - she couldn't retain anything she was learning. San Ramon! Alamo! It's right here. In fact my doctor currently treats hundreds - that's HUNDREDS - of Lyme patents, most from here in the Bay Area.
Every parent should be aware of ticks and Lyme; 25 percent of Lyme patients are kids. If you live where deer and squirrels live, then you can get Lyme. Kids should be checked after playing outside. One author described her two sons' bouts with Lyme, both now cured. One was ill for seven years. Couldn't even go to school. They thought he had all kinds of diseases - childhood arthritis, mental problems, eye problems, flu. We need to know! If I got it, you can get it.
Centers for Disease Control says one has to have a bulls eye rash, but more than 50 percent of Lyme patients never see one. This disease is the No. 1 vector-borne disease in the U.S.; we have five times the number of Lyme sufferers as AIDS patients. Why don't we know about it? And why didn't my doctors know about it?
CDC's official line on Lyme long has been controlled by a group of doctors, Infectious Disease Society of America (IDSA). They have a narrow definition of Lyme - just rashes and joint problems - completely ignoring the brain symptoms, the stomach problems, the rest of the Lyme symptoms that masquerade as other diseases. Lyme is a very difficult disease to diagnose, but if I could diagnose myself off the Internet, then why isn't my doctor getting the information he needs? Doctors now doing research are too few and far between, and are mostly doing it without financial help. I've found that these doctors had Lyme at one time and that's how they became interested.
One M.D. was diagnosed with advanced multiple sclerosis. He read about Lyme, went to a Lyme-literate doctor and is now cured and doing research. Lyme mimics a lot of diseases - multiple sclerosis, Parkinson's, Lou Gherig's disease, fibromyalgia, chronic fatigue, lupus - my doctor said I would be surprised at the number of cases of "lupus" he has cured. There was even a test of cadaver brains from the Alzheimer's Association and seven out of 10 had the Lyme bacteria. Mine masqueraded as an autoimmune disease.
How many other "diseases" are Lyme? Without informed doctors and better tests we will never know. This is a huge problem that keeps thousands of Americans ill and out of work. Insurance companies won't pay for Lyme, but go along with doctors who deny that chronic Lyme exists. Lyme disease doesn't go away. It grows and debilitates. And it can kill. I was lucky to find mine after only five years. Most patients go seven years and to scores of doctors before they are diagnosed - if they are diagnosed at all. Lyme caught right away takes only about two months of antibiotics to cure. But most Lyme is misdiagnosed. So chronic Lyme can take years to treat. Why don't the insurance companies realize this?
Because Lyme is a bacteria, albeit a virulent one, antibiotics work against it. You start treatment, you get worse, you get better, you get worse - the bacteria's cycle seems to be every four weeks. It's a nasty bug. Some people, not knowing, start the antibiotics and get really sick within a few days - it's called the Herxheimer effect - so they stop their antibiotics. Big mistake. Because Lyme is intracellular and extracellular, it is often treated with two different antibiotics. Some people who don't have a good immune system are critically ill right away. They may require intravenous antibiotics and medical support. And if you have a co-infection, it has to be killed before the Lyme can be treated effectively.
If I got another tick bite, I would find myself a doctor who would treat me immediately, THAT DAY. I fully intend to be cured. After I started treatment, I was fairly sick for a time but just recently I have had the best three weeks in several years. This reminded me how I can feel again. I was lucky to find a doctor who is a member of the International Lyme and Associated Diseases Society (ILADS). These wonderful, true scientists are a growing group of Lyme-literate doctors who keep in touch with each other to combine their acquired knowledge gained through experience to recommend treatment for Lyme.
I know way more than I ever wanted to about Lyme and this is just the short version. I have been researching and reading and learning. I know this: If we don't start paying attention to this disease, it can become an epidemic - or has it already?
Sue Savod is now living in Diablo and taking her antibiotics. She is focusing on her career in animal portraits while regaining her health. Contact her at susavod@comcast.net.
Find this article at:
http://www.DanvilleWeekly.com/story.php?story_id=6347
Thursday, May 21, 2009
What We don't know about Lyme.
Hello again,
This is a great article from Pamela Weintraub. It is quite long, but well worth taking the time to read. There is a lot of great information. This last week, I had a couple of appointments with my regular doctors and I was again disheartened at their lack of knowledge of Lyme disease. It was as though they didn't care that I was still suffering from Lyme disease, but that because they didn't know anything about it, it excused them from trying to treat me. They would address my diabetes(brought on by the Lyme disease)but that was all they could do for me. They made the comment that they would let whoever is working with me on Lyme, if anyone, treat me for that. It was infuriating and I resolved again to work harder on being a Lyme disease activist. The work that Pamela Weintraub has done for Lyme disease patients is second to none. For those of you who haven't read any of her books, I encourage to do so.
More resolved than ever,
Richard
What We Don't Know About Lyme
When a mysterious and debilitating illness overtook her and her family, the author struggled to find some answers. What she discovered about Lyme disease - and how little is actually known or agreed upon by the medical experts - is something everyone who goes outdoors should learn.
What We Don't Know About Lyme
By Pamela Weintraub
Features,
June 2009
Lume 101
Slipping Through the Cracks
Lyme on the Brain
The Treatment Controversy
Tick Menagerie
A New Lyme Science
Last Dance With Lyme
How to Protect Yourself Against Lyme Disease
Finding a Provider
Web Resources
After we moved from the city to a wooded property in the suburban hamlet of Chappaqua, N.Y., in 1993, our family began to get sick. At first, the vague headaches, joint pains and bone weariness were so subtle they barely merited note. But as years passed, these symptoms intensified into frank signs of disease.
My arms and legs buzzed so palpably I felt like I was wired to a power grid. A relentless migraine became so intense I spent hours each day in a darkened room, in bed. My husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but slowly he began struggling with memory and groping for words. Our youngest son, David, began to sleep — first, so long that he could not do his homework or see his friends; eventually, so much (15 or more hours a day) that he could not get to class.
Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age 9, the year we moved to our little house in the woods. The doctors called these “growing pains” normal, but by February 2000, Jason, then 16, was essentially disabled. An honor student, he now had trouble reading even simple paragraphs. His joints and muscles hurt so much it was difficult for him to walk. And he couldn’t tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom as hot water and steam eased his pain.
As his condition worsened, and as all sorts of lab tests came back negative, a raft of specialists at New York City’s top teaching hospitals suggested diagnoses ranging from migraine aura (migraine without the pain) to Fifth’s disease (caused by parvovirus). Each diagnosis elicited a treatment, but none of them worked.
“What about Lyme disease?” I asked from time to time, since we lived in an area where the infection was endemic; our backyard was a haven for deer, and Jason spent summers playing in a fort in the woods behind our house.
“There are too many symptoms here, and he’s way too sick for Lyme disease,” replied the pediatrician, who declined to even test for it. But with answers still eluding us, the pediatrician finally drew blood for a Western blot, a diagnostic test that matched antibodies produced by the patient against the proteins of the invading organism — in this case the bacterium known to cause Lyme.
When the labs came back, Jason had so many “bands” — with each band considered an antibody-protein match — that the result was off-the-charts positive. By the summer of that year, the rest of us had been diagnosed as well.
The news was a relief. With a solid diagnosis, we were told by doctors, we could get treated for this easily curable infection, and move on. We felt a flush of optimism, but it turned out that our struggle had just begun. I would spend the next nine years trying to make sense of our misdiagnoses and seeking effective treatment for my children.
Lyme 101 (Back to Top)
What I didn’t know about Lyme disease back then could have filled a book — one that, as a longtime science and medical journalist, I eventually wrote. My book, Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008), explores the complex science and disturbing political war over the illness. But a few facts can be served up straight: Lyme disease is caused by the spirochete Borrelia burgdorferi, a spiral-shaped bacterium, and is generally transmitted to people through the bite of a deer tick.
The disease arrived in the Northeast United States, northwest California and the Great Lakes region in force in the 1970s, as the continent was being reforested and new suburban housing was increasingly built adjacent to woods. The spirochete lived in the blood of rodents and other small mammals inhabiting those woods. When ticks bit these mammals they became infected. When those same ticks bit human hosts, they transmitted Lyme disease to them.
Pushing the disease to epidemic proportions, however, required something else: large mammals, like deer, are each able to provide nourishment for hundreds of large adult ticks, enabling them to reproduce en masse. As the deer population exploded across the forested regions of the country, the Lyme epidemic followed suit. Ultimately, infected ticks traversed the continental flyways on the backs of migrating birds, bringing Lyme to every state. Today, 12 to 40 percent of deer ticks are infected in the most endemic areas of the Northeast, and between 3 and 40 percent in endemic areas of the West Coast. With more than 200,000 CDC-acknowledged cases a year in the United States (the tip of the iceberg, many believe), Lyme has become one of country’s fastest-spreading diseases.
Slipping Through the Cracks (Back to Top)
When diagnosed with a Lyme rash and treated early, most infected patients are easily cured. But this upbeat message has little meaning for those diagnosed late. Show up at the doctor without a rash, and diagnosing Lyme disease becomes an elaborate, labyrinthine affair.
The standard guidelines, published by the Infectious Diseases Society of America (IDSA), call for early diagnosis exclusively through the presence of that telltale rash — mistakenly thought of by many practitioners as a classic “bull’s-eye” shape. Yet the spreading red rash with areas of white clearing, called an erythema migrans, might not be round or oval — let alone a bull’s eye. (Jason’s rash, which I later recognized in a medical textbook, was dismissed by our medical group because it covered his torso in a swath.) According to some studies and estimates, fewer than 60 percent of Lyme patients ever exhibit or notice a rash of any sort.
Those without this early sign may roam the diagnostic desert for years seeking answers. Yet, IDSA guidelines require that, to qualify for diagnosis, patients without the rash must present with one of a small group of quantifiable disease signs, from measurable nerve damage to grossly swollen knees. Though many experts say a significant percentage of Lyme patients experience only “symptoms” — headache, memory loss or fatigue — IDSA calls these problems just too vague to consider a diagnosis of Lyme. But, even with objective signs like swollen knees, patients must pass a series of tests before a diagnosis can be made.
And that’s the other part of the problem. Should the patient present those frank signs of disease and qualify for the test, the bar for passing is set perilously high for some. According to the peer-reviewed journal Mayo Clinic Proceedings, “The tests are prone to false-negative and false-positive results and can be misleading, especially early in the course of the disease. . . . Because serologic [blood] testing is not 100 percent sensitive or specific, some people with Lyme disease will not have confirmatory laboratory results.”
The most comprehensive review of the standard Lyme tests comes from Johns Hopkins University. Working with patients from Pennsylvania and Maryland, the Hopkins scientists studied state-of-the-art serology and DNA tests for Lyme and found serious flaws: Most tellingly, when the standard two-step method recommended by the CDC was used on patients with other laboratory evidence of Lyme disease, it was positive between 45 percent and 77 percent of the time. As for DNA tests, the Hopkins researchers reported these rarely pick up otherwise-confirmed Lyme disease at all.
It is made all the more complicated because there are hundreds of strains of the Lyme disease spirochete throughout the world, says Benjamin Luft, MD, chief of the Division of Infectious Diseases at the State University of New York at Stony Brook. Each strain has its own combination of proteins, evoking a variety of bands on diagnostic tests; some will match the pattern the CDC has approved for a positive on the Western blot (the second of two tests in the series), but others may not. Each Lyme strain evokes a unique antibody pattern and its own flavor of disease.
In short, Mayo Clinic researchers note, diagnosis should be clinical — based not on the tests but on the patient and the patient’s situation as a whole. With so many strains of Lyme disease and a unique immune system for each new patient, this only makes sense. Yet with Lyme disease so controversial, most primary-care doctors end up deferring to the tests, leaving those who fail them out in the cold.
“I’ve been scraping Lyme patients off the sidewalk for years,” says Kenneth Liegner, MD, who practices in Armonk, N.Y., not far from where my family got sick. “By the time some of these people get to me, they are so disabled they can barely think or walk.”
Lyme on the Brain (Back to Top)
Given the barriers to diagnosis, many patients slide ever deeper into illness, where disability can be profound. Lyme invades not just our skin and our joints, but our hearts, nervous systems and eyes. Lyme is commonly considered a knee disease, an impediment in tennis, but the Lyme spirochete, like the syphilis spirochete, also invades the brain.
Testing hundreds of such patients, New York University neuropsychologist Leo J. Shea III, PhD, found specific deficits in concentration, short-term memory and processing speed. Patients can be so impaired they have trouble driving around their neighborhoods and can no longer perform their jobs.
Psychiatrist Brian Fallon, MD, director of the Lyme and Tick Borne Diseases Research Center at Columbia University Medical Center, found that brain infection could trigger a host of psychiatric problems, ranging from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD).
Time and again, Fallon has seen Lyme disease “misdiagnosed as a primary psychiatric problem,” while the root issue — infection with the spirochete B. burgdorferi — was never addressed. This is especially damaging, he says, since a delay in treatment could turn an acute and easily curable infection into a chronic disease highly resistant to treatment.
The Treatment Controversy (Back to Top)
Patients diagnosed in the earliest stage of the disease through a classic rash can usually look forward to full recovery after a monthlong regimen of the oral antibiotics doxycycline or amoxicillin. Those with neurological or arthritic symptoms may be offered intravenous ceftriaxone for a month or two. But experts like Luft and Liegner have found that some 20 percent of those infected for over a year before the start of treatment will fail these protocols and stay sick.
Without further options from the IDSA team, these late-diagnosed patients have sought help from controversial doctors known as Lyme-Literate MDs (LLMDs), who argue that longer courses, higher doses and multidrug antibiotic regimens provide a viable option for many of the “incurable” 20 percent. As ever more patients flock to LLMDs like Liegner, the controversy has mounted, with IDSA pitted against another, newer group: the International Lyme and Associated Diseases Society (ILADS). IDSA says the short-term treatment always stamps out infection and argues that overexposure to antibiotics can generate treatment-resistant bugs. Competing guidelines from ILADS hold that patients already have a hard-to-treat infection (chronic, persistent Lyme disease) and that more aggressive treatment is thus warranted.
The debate has recently come closer to resolution with surprising research from veterinary scientist Stephen Barthold, DVM, PhD, who spent 25 years investigating Lyme disease at Yale before setting up shop as director of the Center for Comparative Medicine at the University of California at Davis. Barthold reports that if he allows the infection to remain untreated for months across a range of mammal species in the lab, he can always recover living spirochetes, generally sequestered in tissues that are rich in collagen. When laboratory mice infected with these spirochetes are treated with what should be effective doses of various antibiotics, the spirochetes cannot be cultured from tissues by conventional means, but they are alive and can be transmitted by ticks to other mice.
The finding resonates with what late-diagnosed patients report: If surviving spirochetes are so sluggish they cannot replicate, they may be impervious to antibiotics that work by targeting bacterial cells as they divide. The persisting spirochetes could be the presumptive source of the constitutional symptoms like pain and fatigue that often follow treatment; they may be provoking the production of symptom-causing cytokines (immune molecules), yet still be too low in number to cause the gross inflammation or provoke the antibody response that many mainstream experts call the sine qua non of the disease. Infection might be suppressed but not eradicated by treatment, as so many relapsing patients report.
Spurred by the findings, university-based researchers are attacking the infection on several fronts. Scientists like Luft and Barthold are actively testing antibiotics designed to purge these dormant, resistant spirochetes. Some researchers are trying to destroy them with nanotechnology and heat. And a California company called Viral Genetics, with research headed by M. Karen Newell, PhD, and aided by Nobel laureate Luc Montagnier, discoverer of the HIV virus, is trying to modulate the immune system so it can clean out infection on its own. Still others suggest that the low-level infection might be benign if the immune response could be contained.
Tick Menagerie (Back to Top)
Improved treatments for Lyme disease alone may not solve the problem. There are other infections inhabiting the ticks that spread Lyme, and they are factors as well. The malaria-like parasite Babesia infects our red blood cells and results in fever, exhaustion and drenching sweats. Babesiosis combined with Lyme disease can be especially protracted and difficult to treat. Tick-borne bacteria like Anaplasma and Ehrlichia, which live in human cells, are rife throughout regions where Lyme has reared its head. These organisms don’t necessarily respond to all common treatment for Lyme disease and may cause serious illness even when Lyme is not involved.
Added to this are other microbes as well; though still controversial, these, too, are now considered possible agents of the disease complex broadly referred to as “Lyme.” One of the most notable is the rod-shaped bacterium Bartonella henselae, known as a cause of “cat scratch” disease and commonly transmitted by cats. More recently, forms of bartonella have been discovered in abundance in deer ticks. Some doctors cite Bartonella as a culprit when symptoms are particularly neuropsychiatric, and when treatment for Lyme does not work.
Another tick-borne suspect, Mycoplasma, has been discovered in deer ticks in Connecticut and New Jersey. “This could be the missing link,” says Eva Sapi, PhD, associate professor of biology at the University of New Haven, who also hypothesizes that nematodes play a role in tick-borne disease. It would explain why some patients don’t get well when treated for Lyme disease alone. Other researchers have found Tularemia, often an agent of bio-terrorism, in Lyme ticks.
A host of other spirochetes, some not yet identified, complete the scene. Yale researchers found that 20 percent of the spirochetes thought to be Borrelia burgdorferi in the Northeast are really another species, a relapsing fever spirochete never seen in North America before. There’s a still-unidentified spirochete in Montana, this time transmitted by the wood tick. And then there’s the lonestar tick, which has recently spread from the South throughout the Midwest and up the East Coast, as far north as Maine. The lonestar carries an unidentified spirochete, the cause of a Lymelike disease that the CDC has recently recognized.
“We are just starting to understand the full range of infections that we might get,” says David H. Persing, MD, PhD, chief medical and technology officer for Cepheid, a California biotech firm and a world expert in molecular diagnostics. “I don’t think we know half of the agents that are potentially transmissible by ticks.”
Add to this the morphing quality of the various microbes implicated in these Lymelike diseases. Through constant shifting of plasmid DNA among the microbes, ticks facilitate a rapid form of evolution and drive the creation of novel strains and microbes, virtually nonstop. Indeed, in the universe of emerging infectious disease, the tick is the final frontier. The ultimate germ generator, it is the ideal wet lab for microorganisms to mix and remix in infinite formats, spewing a kaleidoscopic oeuvre of novel bacteria and viruses, some of them pathogens the world has never seen.
A New Lyme Science (Back to Top)
I wish I had understood Lyme as an emerging infectious disease and political hot potato when my family first got sick. Exposed to the noxious debate, the naive patient sees two polarized factions and feels pressured to choose one. But interview the workbench researchers and you will find a complex, nuanced reality emerging from the science itself. Sadly, the vicious political fight over Lyme disease has dumbed down the dialogue and prevented the best science from being heard.
In 2009, the pace of scientific progress is great. Instead of testing for a mere 10 antibodies to a limited number of spirochetal proteins — the procedure still being used in most of today’s commercial labs — new diagnostics that Luft and his Stony Brook colleagues have developed will use proteomics (study of proteins) to tap 1,800 B. burgdorferi proteins found across the range of strains. “We want to test against the entire array of borrelia proteins in all their variability,” says Luft. “So if I look at a patient over time, over the course of their disease I can see whether new proteins, ones we’ve never noticed, might emerge.”
The work on strains could alter how we diagnose and treat the disease in the years to come, says Alan Barbour, director of the Pacific-Southwest Regional Center of Excellence for Biodefense and Emerging Infectious Diseases at the University of California Irvine and one of the world’s foremost spirochete experts. “If some strains are more likely than others to spread in the blood, and by that route to other tissues, then identification of the strain a person is infected with could help guide therapy,” Barbour explains. “Some strains may call for a longer course of antibiotics. The problem is isolating the microbe out of the patient to see what strain it is. This could be done by a Polymerase Chain Reaction (PCR) test of the blood or a skin biopsy, when there is a rash. Isolating the microbe is harder when the illness has been going on for longer than a few weeks, but any isolate of Borrelia burgdorferi from a patient would mean a diagnosis of Lyme disease.”
Also shedding light on treatment is genomics (the study of genes). The Luft team has recently found that Lyme spirochetes have genes for pumping out the first-line antibiotic doxycycline. This means that even as doxycycline enters the Lyme bacterium, it is being ejected, much like a sump pump might eject water from a basement floor. As a result, the dose might not climb high enough to kill the infection, and the patient won’t get well.
Based on this finding, Luft is now studying another drug — tigecycline, an intravenous antibiotic currently used for infections of the abdominal organs and skin. Its mechanism is much like that of doxycycline — except that its chemical structure inhibits the spirochetes’ “pump,” keeping the antibiotic from being ejected by the cells. “It’s a hundred times more active against the spirochete than doxycycline. Instead of just inhibiting the spirochetes, like doxy, it kills them dead,” says Luft.
“We’re at a critical point,” he adds. “We have powerful new tools and a fundamental understanding of the biology of the Borrelia. We know every gene in that organism. We know all the variations of those genes. We know what’s in the human genome. So, when someone gets sick, we’ve got to put this together, in context, and ask what’s going on.”
Indeed, work like this will explain why prognosis varies so widely from one patient to the next. With so many strains, so many co-infections and so many immune systems, Lyme — in the broad sense of the word — will never be one-size-fits-all.
“Some researchers have thrown down their gloves and retreated to their corners, leaving patients out in the cold,” says Luft. “But despite what they say, the patients are still sick. It’s a question of doing right by them — it’s not a question of whether you might have to eat crow. We’ve got to go in and do the right experiments, and then we can look truth in the eye.”
Last Dance With Lyme (Back to Top)
My family has come a long way since our Lyme diagnoses almost a decade ago. We’ve left the Lymelands for safer ground — the concrete expanse of Brooklyn. I’ve been off antibiotics since 2004 and am back at a full-time job. Mark continues to relapse when he stops his antibiotic, but with it, he works his day job, plays tennis and seems fine. Jason has recovered. He graduated from Brown University in spring 2008 and leaves for film school in the fall.
But Lyme still clouds our lives because our younger son, David, was re-infected in Westchester County a couple of years back and remains ill.
In all my years of research, I never doubted that IDSA was right about early Lyme: Treat the rash and a cure would be guaranteed. So in the summer of 2007, when David called to tell me that friends in his college dorm had recognized a classic bull’s-eye rash on his arm, I was actually relieved: For once, we’d caught it early. A month of antibiotics, I told myself, and David would be cured.
We took a 40-minute drive to Dr. Daniel Cameron’s office in downtown Mount Kisco, N.Y., and his physician assistant easily diagnosed a bull’s-eye-shaped erythema migrans that was an archetype of the form. She prescribed a few weeks of amoxicillin and sent us home.
“When you get a rash so classic that everyone at college tells you it’s Lyme disease, it’s a beautiful thing,” Dan Cameron, now president of ILADS, said at the time.
But by spring 2008, David’s fatigue was so profound, his memory and focus so poor, that he had to drop his classes at Vassar College and come home. Back in New York, doctors discovered gross damage to David’s cranial nerves — irrefutable, IDSA-style proof of inflammatory disease and hardcore evidence of Lyme. Ordering more tests, Cameron found not just Lyme disease but a co-infection — babesiosis — known to complicate the picture and make Lyme harder to treat.
I completed work on my book about this mysterious disease more than a year ago, but I know now that our journey is far from over. Our family, along with many others, continues to deal with the fallout at the frontlines of an epidemic, in that unforgiving land called Lyme.
Pamela Weintraub is a senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008). She writes a blog on emerging disease for Psychology Today.
How to Protect Yourself Against Lyme Disease (Back to Top)
For those who live and work in Lyme endemic areas, a little protection goes a long way. You can enjoy nature, according to Pat Smith, president of the Lyme Disease Association, as long as you take some precautions:
* Walk in the middle of trails. Avoid sitting on logs or leaning on trees.
* Wear a hat. Tuck your hair in, if possible.
* Wear a long-sleeved shirt, fitted at the waist.
* Wear boots or shoes, not sandals. No bare feet.
* Wear long pants tucked into high socks, or duct tape around pant bottoms.
* Consider applying Deet for skin and permethrin for clothes (use your own best judgment in weighing exposure to these toxins against risk of tick bites).
* Wear white or light-colored clothing so ticks stand out.
* Check yourself and your children for ticks immediately after outdoor exposure. Repeat the tick check again, three days later. Remember that nymphal (adolescent) ticks can look like freckles. They are the size of poppy seeds.
* If you find an attached tick, remove it carefully with tweezers placed as close to the skin as possible. Pull the tick upward with steady, even pressure, making sure that mouth parts are cleanly removed. Apply antiseptic and call a doctor. Save the tick in a sealed container with a moist cotton ball. Call your state health department to inquire about testing. (Ticks do fall off on their own eventually, so even if you don’t see a tick, it is possible that you may have been exposed to disease.)
* Consult your doctor about treating the tick bite with oral antibiotics. Though the number of days required for this treatment remains controversial, new findings from CDC research suggest that the single dose of treatment generally recommended for this scenario may be inadequate and that a doxycycline sustained release protocol (19 days) the CDC is developing might be more effective.
Finding a Provider (Back to Top)
How to find a doctor to treat your tick-borne disease.
Lyme disease is never pleasant, but if you are exposed in endemic areas of the Northeast, the Midwest or the West Coast and develop the spreading red Lyme rash known as erythema migrans, the best person to consult is your family doctor. The classic Lyme disease rash is considered diagnostic for the disease in these areas, according to the standard guidelines from the Infectious Diseases Society of America (IDSA). Physicians following these widely accepted guidelines will not even have to order a blood test to make a bulletproof diagnosis. For most people without other complications, including other infections from the same tick bite, a month of treatment with oral antibiotics like doxycycline or amoxicillin should cure the disease.
Finding a doctor able to make the diagnosis and treat you adequately becomes far more challenging if you do not see or develop a rash, or if you live outside areas considered most endemic for the disease. Given the debate in the medical community over the classic signs and symptoms for Lyme, the inaccuracy of the tests, and the presence of complicating co-infections, patients in this circumstance can advance into later, harder-to-treat disease before they are ever diagnosed.
In this instance, it may be appropriate to consult a neurologist, rheumatologist or infectious disease doctor in your community for specialized but mainstream care. Following the IDSA guidelines, these physicians will treat these sicker patients with specialized antimicrobials aimed at co-infections, or with a month or two of intravenous Rocephin, which crosses the blood brain barrier and better penetrates the joints, often resolving Lyme disease.
But about 20 percent of patients diagnosed with late-stage Lyme disease report that they fail even this more aggressive treatment; others report that their co-infections are missed. Still sick, they find themselves navigating the tortuous backroads of the Lyme wars. Those seeking clinical evaluation of the range of tick-borne infections or continued treatment for Lyme disease itself — as I did with my own family — may decide to cross the line, leaving the restrictions of the mainstream viewpoint for the alternative world of Lyme doctors, referred to by patients as Lyme-Literate Medical Doctors, or LLMDs. These physicians will test patients for a range of co-infections and treat Lyme disease longer, using antibiotics in combination (as is done with tuberculosis cases) for months and sometimes years.
Many patients report recovery on such protocols — but many do not, and for them, the search for treatment goes on. Some patients consult trained naturopaths, who help them boost their immune systems. One new trend used by neurologists at New York University and Yale involves treatment with IVIG (intravenous immunoglobulin), a blood product rich in immune molecules that can heal damaged nerves.
For reference to a doctor skilled in mainstream protocols, contact the Infectious Diseases Society of America. For reference to a doctor willing to treat tick-borne infection beyond the standard guidelines, contact the Lyme Disease Association or the International Lyme and Associated Diseases Society. (See Web Resources, below.)
Web Resources (Back to Top)
* Infectious Diseases Society of America: www.idsociety.org
* Lyme Disease Association: www.lymediseaseassociation.org
* International Lyme and Associated Diseases Society: www.ilads.or
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Behind the Scenes With Alexandra Coustea
This is a great article from Pamela Weintraub. It is quite long, but well worth taking the time to read. There is a lot of great information. This last week, I had a couple of appointments with my regular doctors and I was again disheartened at their lack of knowledge of Lyme disease. It was as though they didn't care that I was still suffering from Lyme disease, but that because they didn't know anything about it, it excused them from trying to treat me. They would address my diabetes(brought on by the Lyme disease)but that was all they could do for me. They made the comment that they would let whoever is working with me on Lyme, if anyone, treat me for that. It was infuriating and I resolved again to work harder on being a Lyme disease activist. The work that Pamela Weintraub has done for Lyme disease patients is second to none. For those of you who haven't read any of her books, I encourage to do so.
More resolved than ever,
Richard
What We Don't Know About Lyme
When a mysterious and debilitating illness overtook her and her family, the author struggled to find some answers. What she discovered about Lyme disease - and how little is actually known or agreed upon by the medical experts - is something everyone who goes outdoors should learn.
What We Don't Know About Lyme
By Pamela Weintraub
Features,
June 2009
Lume 101
Slipping Through the Cracks
Lyme on the Brain
The Treatment Controversy
Tick Menagerie
A New Lyme Science
Last Dance With Lyme
How to Protect Yourself Against Lyme Disease
Finding a Provider
Web Resources
After we moved from the city to a wooded property in the suburban hamlet of Chappaqua, N.Y., in 1993, our family began to get sick. At first, the vague headaches, joint pains and bone weariness were so subtle they barely merited note. But as years passed, these symptoms intensified into frank signs of disease.
My arms and legs buzzed so palpably I felt like I was wired to a power grid. A relentless migraine became so intense I spent hours each day in a darkened room, in bed. My husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but slowly he began struggling with memory and groping for words. Our youngest son, David, began to sleep — first, so long that he could not do his homework or see his friends; eventually, so much (15 or more hours a day) that he could not get to class.
Hardest hit was Jason, our oldest, who suffered fatigue and shooting pains starting at age 9, the year we moved to our little house in the woods. The doctors called these “growing pains” normal, but by February 2000, Jason, then 16, was essentially disabled. An honor student, he now had trouble reading even simple paragraphs. His joints and muscles hurt so much it was difficult for him to walk. And he couldn’t tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom as hot water and steam eased his pain.
As his condition worsened, and as all sorts of lab tests came back negative, a raft of specialists at New York City’s top teaching hospitals suggested diagnoses ranging from migraine aura (migraine without the pain) to Fifth’s disease (caused by parvovirus). Each diagnosis elicited a treatment, but none of them worked.
“What about Lyme disease?” I asked from time to time, since we lived in an area where the infection was endemic; our backyard was a haven for deer, and Jason spent summers playing in a fort in the woods behind our house.
“There are too many symptoms here, and he’s way too sick for Lyme disease,” replied the pediatrician, who declined to even test for it. But with answers still eluding us, the pediatrician finally drew blood for a Western blot, a diagnostic test that matched antibodies produced by the patient against the proteins of the invading organism — in this case the bacterium known to cause Lyme.
When the labs came back, Jason had so many “bands” — with each band considered an antibody-protein match — that the result was off-the-charts positive. By the summer of that year, the rest of us had been diagnosed as well.
The news was a relief. With a solid diagnosis, we were told by doctors, we could get treated for this easily curable infection, and move on. We felt a flush of optimism, but it turned out that our struggle had just begun. I would spend the next nine years trying to make sense of our misdiagnoses and seeking effective treatment for my children.
Lyme 101 (Back to Top)
What I didn’t know about Lyme disease back then could have filled a book — one that, as a longtime science and medical journalist, I eventually wrote. My book, Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008), explores the complex science and disturbing political war over the illness. But a few facts can be served up straight: Lyme disease is caused by the spirochete Borrelia burgdorferi, a spiral-shaped bacterium, and is generally transmitted to people through the bite of a deer tick.
The disease arrived in the Northeast United States, northwest California and the Great Lakes region in force in the 1970s, as the continent was being reforested and new suburban housing was increasingly built adjacent to woods. The spirochete lived in the blood of rodents and other small mammals inhabiting those woods. When ticks bit these mammals they became infected. When those same ticks bit human hosts, they transmitted Lyme disease to them.
Pushing the disease to epidemic proportions, however, required something else: large mammals, like deer, are each able to provide nourishment for hundreds of large adult ticks, enabling them to reproduce en masse. As the deer population exploded across the forested regions of the country, the Lyme epidemic followed suit. Ultimately, infected ticks traversed the continental flyways on the backs of migrating birds, bringing Lyme to every state. Today, 12 to 40 percent of deer ticks are infected in the most endemic areas of the Northeast, and between 3 and 40 percent in endemic areas of the West Coast. With more than 200,000 CDC-acknowledged cases a year in the United States (the tip of the iceberg, many believe), Lyme has become one of country’s fastest-spreading diseases.
Slipping Through the Cracks (Back to Top)
When diagnosed with a Lyme rash and treated early, most infected patients are easily cured. But this upbeat message has little meaning for those diagnosed late. Show up at the doctor without a rash, and diagnosing Lyme disease becomes an elaborate, labyrinthine affair.
The standard guidelines, published by the Infectious Diseases Society of America (IDSA), call for early diagnosis exclusively through the presence of that telltale rash — mistakenly thought of by many practitioners as a classic “bull’s-eye” shape. Yet the spreading red rash with areas of white clearing, called an erythema migrans, might not be round or oval — let alone a bull’s eye. (Jason’s rash, which I later recognized in a medical textbook, was dismissed by our medical group because it covered his torso in a swath.) According to some studies and estimates, fewer than 60 percent of Lyme patients ever exhibit or notice a rash of any sort.
Those without this early sign may roam the diagnostic desert for years seeking answers. Yet, IDSA guidelines require that, to qualify for diagnosis, patients without the rash must present with one of a small group of quantifiable disease signs, from measurable nerve damage to grossly swollen knees. Though many experts say a significant percentage of Lyme patients experience only “symptoms” — headache, memory loss or fatigue — IDSA calls these problems just too vague to consider a diagnosis of Lyme. But, even with objective signs like swollen knees, patients must pass a series of tests before a diagnosis can be made.
And that’s the other part of the problem. Should the patient present those frank signs of disease and qualify for the test, the bar for passing is set perilously high for some. According to the peer-reviewed journal Mayo Clinic Proceedings, “The tests are prone to false-negative and false-positive results and can be misleading, especially early in the course of the disease. . . . Because serologic [blood] testing is not 100 percent sensitive or specific, some people with Lyme disease will not have confirmatory laboratory results.”
The most comprehensive review of the standard Lyme tests comes from Johns Hopkins University. Working with patients from Pennsylvania and Maryland, the Hopkins scientists studied state-of-the-art serology and DNA tests for Lyme and found serious flaws: Most tellingly, when the standard two-step method recommended by the CDC was used on patients with other laboratory evidence of Lyme disease, it was positive between 45 percent and 77 percent of the time. As for DNA tests, the Hopkins researchers reported these rarely pick up otherwise-confirmed Lyme disease at all.
It is made all the more complicated because there are hundreds of strains of the Lyme disease spirochete throughout the world, says Benjamin Luft, MD, chief of the Division of Infectious Diseases at the State University of New York at Stony Brook. Each strain has its own combination of proteins, evoking a variety of bands on diagnostic tests; some will match the pattern the CDC has approved for a positive on the Western blot (the second of two tests in the series), but others may not. Each Lyme strain evokes a unique antibody pattern and its own flavor of disease.
In short, Mayo Clinic researchers note, diagnosis should be clinical — based not on the tests but on the patient and the patient’s situation as a whole. With so many strains of Lyme disease and a unique immune system for each new patient, this only makes sense. Yet with Lyme disease so controversial, most primary-care doctors end up deferring to the tests, leaving those who fail them out in the cold.
“I’ve been scraping Lyme patients off the sidewalk for years,” says Kenneth Liegner, MD, who practices in Armonk, N.Y., not far from where my family got sick. “By the time some of these people get to me, they are so disabled they can barely think or walk.”
Lyme on the Brain (Back to Top)
Given the barriers to diagnosis, many patients slide ever deeper into illness, where disability can be profound. Lyme invades not just our skin and our joints, but our hearts, nervous systems and eyes. Lyme is commonly considered a knee disease, an impediment in tennis, but the Lyme spirochete, like the syphilis spirochete, also invades the brain.
Testing hundreds of such patients, New York University neuropsychologist Leo J. Shea III, PhD, found specific deficits in concentration, short-term memory and processing speed. Patients can be so impaired they have trouble driving around their neighborhoods and can no longer perform their jobs.
Psychiatrist Brian Fallon, MD, director of the Lyme and Tick Borne Diseases Research Center at Columbia University Medical Center, found that brain infection could trigger a host of psychiatric problems, ranging from bipolar disorder and depression to panic and obsessive-compulsive disorder (OCD).
Time and again, Fallon has seen Lyme disease “misdiagnosed as a primary psychiatric problem,” while the root issue — infection with the spirochete B. burgdorferi — was never addressed. This is especially damaging, he says, since a delay in treatment could turn an acute and easily curable infection into a chronic disease highly resistant to treatment.
The Treatment Controversy (Back to Top)
Patients diagnosed in the earliest stage of the disease through a classic rash can usually look forward to full recovery after a monthlong regimen of the oral antibiotics doxycycline or amoxicillin. Those with neurological or arthritic symptoms may be offered intravenous ceftriaxone for a month or two. But experts like Luft and Liegner have found that some 20 percent of those infected for over a year before the start of treatment will fail these protocols and stay sick.
Without further options from the IDSA team, these late-diagnosed patients have sought help from controversial doctors known as Lyme-Literate MDs (LLMDs), who argue that longer courses, higher doses and multidrug antibiotic regimens provide a viable option for many of the “incurable” 20 percent. As ever more patients flock to LLMDs like Liegner, the controversy has mounted, with IDSA pitted against another, newer group: the International Lyme and Associated Diseases Society (ILADS). IDSA says the short-term treatment always stamps out infection and argues that overexposure to antibiotics can generate treatment-resistant bugs. Competing guidelines from ILADS hold that patients already have a hard-to-treat infection (chronic, persistent Lyme disease) and that more aggressive treatment is thus warranted.
The debate has recently come closer to resolution with surprising research from veterinary scientist Stephen Barthold, DVM, PhD, who spent 25 years investigating Lyme disease at Yale before setting up shop as director of the Center for Comparative Medicine at the University of California at Davis. Barthold reports that if he allows the infection to remain untreated for months across a range of mammal species in the lab, he can always recover living spirochetes, generally sequestered in tissues that are rich in collagen. When laboratory mice infected with these spirochetes are treated with what should be effective doses of various antibiotics, the spirochetes cannot be cultured from tissues by conventional means, but they are alive and can be transmitted by ticks to other mice.
The finding resonates with what late-diagnosed patients report: If surviving spirochetes are so sluggish they cannot replicate, they may be impervious to antibiotics that work by targeting bacterial cells as they divide. The persisting spirochetes could be the presumptive source of the constitutional symptoms like pain and fatigue that often follow treatment; they may be provoking the production of symptom-causing cytokines (immune molecules), yet still be too low in number to cause the gross inflammation or provoke the antibody response that many mainstream experts call the sine qua non of the disease. Infection might be suppressed but not eradicated by treatment, as so many relapsing patients report.
Spurred by the findings, university-based researchers are attacking the infection on several fronts. Scientists like Luft and Barthold are actively testing antibiotics designed to purge these dormant, resistant spirochetes. Some researchers are trying to destroy them with nanotechnology and heat. And a California company called Viral Genetics, with research headed by M. Karen Newell, PhD, and aided by Nobel laureate Luc Montagnier, discoverer of the HIV virus, is trying to modulate the immune system so it can clean out infection on its own. Still others suggest that the low-level infection might be benign if the immune response could be contained.
Tick Menagerie (Back to Top)
Improved treatments for Lyme disease alone may not solve the problem. There are other infections inhabiting the ticks that spread Lyme, and they are factors as well. The malaria-like parasite Babesia infects our red blood cells and results in fever, exhaustion and drenching sweats. Babesiosis combined with Lyme disease can be especially protracted and difficult to treat. Tick-borne bacteria like Anaplasma and Ehrlichia, which live in human cells, are rife throughout regions where Lyme has reared its head. These organisms don’t necessarily respond to all common treatment for Lyme disease and may cause serious illness even when Lyme is not involved.
Added to this are other microbes as well; though still controversial, these, too, are now considered possible agents of the disease complex broadly referred to as “Lyme.” One of the most notable is the rod-shaped bacterium Bartonella henselae, known as a cause of “cat scratch” disease and commonly transmitted by cats. More recently, forms of bartonella have been discovered in abundance in deer ticks. Some doctors cite Bartonella as a culprit when symptoms are particularly neuropsychiatric, and when treatment for Lyme does not work.
Another tick-borne suspect, Mycoplasma, has been discovered in deer ticks in Connecticut and New Jersey. “This could be the missing link,” says Eva Sapi, PhD, associate professor of biology at the University of New Haven, who also hypothesizes that nematodes play a role in tick-borne disease. It would explain why some patients don’t get well when treated for Lyme disease alone. Other researchers have found Tularemia, often an agent of bio-terrorism, in Lyme ticks.
A host of other spirochetes, some not yet identified, complete the scene. Yale researchers found that 20 percent of the spirochetes thought to be Borrelia burgdorferi in the Northeast are really another species, a relapsing fever spirochete never seen in North America before. There’s a still-unidentified spirochete in Montana, this time transmitted by the wood tick. And then there’s the lonestar tick, which has recently spread from the South throughout the Midwest and up the East Coast, as far north as Maine. The lonestar carries an unidentified spirochete, the cause of a Lymelike disease that the CDC has recently recognized.
“We are just starting to understand the full range of infections that we might get,” says David H. Persing, MD, PhD, chief medical and technology officer for Cepheid, a California biotech firm and a world expert in molecular diagnostics. “I don’t think we know half of the agents that are potentially transmissible by ticks.”
Add to this the morphing quality of the various microbes implicated in these Lymelike diseases. Through constant shifting of plasmid DNA among the microbes, ticks facilitate a rapid form of evolution and drive the creation of novel strains and microbes, virtually nonstop. Indeed, in the universe of emerging infectious disease, the tick is the final frontier. The ultimate germ generator, it is the ideal wet lab for microorganisms to mix and remix in infinite formats, spewing a kaleidoscopic oeuvre of novel bacteria and viruses, some of them pathogens the world has never seen.
A New Lyme Science (Back to Top)
I wish I had understood Lyme as an emerging infectious disease and political hot potato when my family first got sick. Exposed to the noxious debate, the naive patient sees two polarized factions and feels pressured to choose one. But interview the workbench researchers and you will find a complex, nuanced reality emerging from the science itself. Sadly, the vicious political fight over Lyme disease has dumbed down the dialogue and prevented the best science from being heard.
In 2009, the pace of scientific progress is great. Instead of testing for a mere 10 antibodies to a limited number of spirochetal proteins — the procedure still being used in most of today’s commercial labs — new diagnostics that Luft and his Stony Brook colleagues have developed will use proteomics (study of proteins) to tap 1,800 B. burgdorferi proteins found across the range of strains. “We want to test against the entire array of borrelia proteins in all their variability,” says Luft. “So if I look at a patient over time, over the course of their disease I can see whether new proteins, ones we’ve never noticed, might emerge.”
The work on strains could alter how we diagnose and treat the disease in the years to come, says Alan Barbour, director of the Pacific-Southwest Regional Center of Excellence for Biodefense and Emerging Infectious Diseases at the University of California Irvine and one of the world’s foremost spirochete experts. “If some strains are more likely than others to spread in the blood, and by that route to other tissues, then identification of the strain a person is infected with could help guide therapy,” Barbour explains. “Some strains may call for a longer course of antibiotics. The problem is isolating the microbe out of the patient to see what strain it is. This could be done by a Polymerase Chain Reaction (PCR) test of the blood or a skin biopsy, when there is a rash. Isolating the microbe is harder when the illness has been going on for longer than a few weeks, but any isolate of Borrelia burgdorferi from a patient would mean a diagnosis of Lyme disease.”
Also shedding light on treatment is genomics (the study of genes). The Luft team has recently found that Lyme spirochetes have genes for pumping out the first-line antibiotic doxycycline. This means that even as doxycycline enters the Lyme bacterium, it is being ejected, much like a sump pump might eject water from a basement floor. As a result, the dose might not climb high enough to kill the infection, and the patient won’t get well.
Based on this finding, Luft is now studying another drug — tigecycline, an intravenous antibiotic currently used for infections of the abdominal organs and skin. Its mechanism is much like that of doxycycline — except that its chemical structure inhibits the spirochetes’ “pump,” keeping the antibiotic from being ejected by the cells. “It’s a hundred times more active against the spirochete than doxycycline. Instead of just inhibiting the spirochetes, like doxy, it kills them dead,” says Luft.
“We’re at a critical point,” he adds. “We have powerful new tools and a fundamental understanding of the biology of the Borrelia. We know every gene in that organism. We know all the variations of those genes. We know what’s in the human genome. So, when someone gets sick, we’ve got to put this together, in context, and ask what’s going on.”
Indeed, work like this will explain why prognosis varies so widely from one patient to the next. With so many strains, so many co-infections and so many immune systems, Lyme — in the broad sense of the word — will never be one-size-fits-all.
“Some researchers have thrown down their gloves and retreated to their corners, leaving patients out in the cold,” says Luft. “But despite what they say, the patients are still sick. It’s a question of doing right by them — it’s not a question of whether you might have to eat crow. We’ve got to go in and do the right experiments, and then we can look truth in the eye.”
Last Dance With Lyme (Back to Top)
My family has come a long way since our Lyme diagnoses almost a decade ago. We’ve left the Lymelands for safer ground — the concrete expanse of Brooklyn. I’ve been off antibiotics since 2004 and am back at a full-time job. Mark continues to relapse when he stops his antibiotic, but with it, he works his day job, plays tennis and seems fine. Jason has recovered. He graduated from Brown University in spring 2008 and leaves for film school in the fall.
But Lyme still clouds our lives because our younger son, David, was re-infected in Westchester County a couple of years back and remains ill.
In all my years of research, I never doubted that IDSA was right about early Lyme: Treat the rash and a cure would be guaranteed. So in the summer of 2007, when David called to tell me that friends in his college dorm had recognized a classic bull’s-eye rash on his arm, I was actually relieved: For once, we’d caught it early. A month of antibiotics, I told myself, and David would be cured.
We took a 40-minute drive to Dr. Daniel Cameron’s office in downtown Mount Kisco, N.Y., and his physician assistant easily diagnosed a bull’s-eye-shaped erythema migrans that was an archetype of the form. She prescribed a few weeks of amoxicillin and sent us home.
“When you get a rash so classic that everyone at college tells you it’s Lyme disease, it’s a beautiful thing,” Dan Cameron, now president of ILADS, said at the time.
But by spring 2008, David’s fatigue was so profound, his memory and focus so poor, that he had to drop his classes at Vassar College and come home. Back in New York, doctors discovered gross damage to David’s cranial nerves — irrefutable, IDSA-style proof of inflammatory disease and hardcore evidence of Lyme. Ordering more tests, Cameron found not just Lyme disease but a co-infection — babesiosis — known to complicate the picture and make Lyme harder to treat.
I completed work on my book about this mysterious disease more than a year ago, but I know now that our journey is far from over. Our family, along with many others, continues to deal with the fallout at the frontlines of an epidemic, in that unforgiving land called Lyme.
Pamela Weintraub is a senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic (St. Martin’s Press, 2008). She writes a blog on emerging disease for Psychology Today.
How to Protect Yourself Against Lyme Disease (Back to Top)
For those who live and work in Lyme endemic areas, a little protection goes a long way. You can enjoy nature, according to Pat Smith, president of the Lyme Disease Association, as long as you take some precautions:
* Walk in the middle of trails. Avoid sitting on logs or leaning on trees.
* Wear a hat. Tuck your hair in, if possible.
* Wear a long-sleeved shirt, fitted at the waist.
* Wear boots or shoes, not sandals. No bare feet.
* Wear long pants tucked into high socks, or duct tape around pant bottoms.
* Consider applying Deet for skin and permethrin for clothes (use your own best judgment in weighing exposure to these toxins against risk of tick bites).
* Wear white or light-colored clothing so ticks stand out.
* Check yourself and your children for ticks immediately after outdoor exposure. Repeat the tick check again, three days later. Remember that nymphal (adolescent) ticks can look like freckles. They are the size of poppy seeds.
* If you find an attached tick, remove it carefully with tweezers placed as close to the skin as possible. Pull the tick upward with steady, even pressure, making sure that mouth parts are cleanly removed. Apply antiseptic and call a doctor. Save the tick in a sealed container with a moist cotton ball. Call your state health department to inquire about testing. (Ticks do fall off on their own eventually, so even if you don’t see a tick, it is possible that you may have been exposed to disease.)
* Consult your doctor about treating the tick bite with oral antibiotics. Though the number of days required for this treatment remains controversial, new findings from CDC research suggest that the single dose of treatment generally recommended for this scenario may be inadequate and that a doxycycline sustained release protocol (19 days) the CDC is developing might be more effective.
Finding a Provider (Back to Top)
How to find a doctor to treat your tick-borne disease.
Lyme disease is never pleasant, but if you are exposed in endemic areas of the Northeast, the Midwest or the West Coast and develop the spreading red Lyme rash known as erythema migrans, the best person to consult is your family doctor. The classic Lyme disease rash is considered diagnostic for the disease in these areas, according to the standard guidelines from the Infectious Diseases Society of America (IDSA). Physicians following these widely accepted guidelines will not even have to order a blood test to make a bulletproof diagnosis. For most people without other complications, including other infections from the same tick bite, a month of treatment with oral antibiotics like doxycycline or amoxicillin should cure the disease.
Finding a doctor able to make the diagnosis and treat you adequately becomes far more challenging if you do not see or develop a rash, or if you live outside areas considered most endemic for the disease. Given the debate in the medical community over the classic signs and symptoms for Lyme, the inaccuracy of the tests, and the presence of complicating co-infections, patients in this circumstance can advance into later, harder-to-treat disease before they are ever diagnosed.
In this instance, it may be appropriate to consult a neurologist, rheumatologist or infectious disease doctor in your community for specialized but mainstream care. Following the IDSA guidelines, these physicians will treat these sicker patients with specialized antimicrobials aimed at co-infections, or with a month or two of intravenous Rocephin, which crosses the blood brain barrier and better penetrates the joints, often resolving Lyme disease.
But about 20 percent of patients diagnosed with late-stage Lyme disease report that they fail even this more aggressive treatment; others report that their co-infections are missed. Still sick, they find themselves navigating the tortuous backroads of the Lyme wars. Those seeking clinical evaluation of the range of tick-borne infections or continued treatment for Lyme disease itself — as I did with my own family — may decide to cross the line, leaving the restrictions of the mainstream viewpoint for the alternative world of Lyme doctors, referred to by patients as Lyme-Literate Medical Doctors, or LLMDs. These physicians will test patients for a range of co-infections and treat Lyme disease longer, using antibiotics in combination (as is done with tuberculosis cases) for months and sometimes years.
Many patients report recovery on such protocols — but many do not, and for them, the search for treatment goes on. Some patients consult trained naturopaths, who help them boost their immune systems. One new trend used by neurologists at New York University and Yale involves treatment with IVIG (intravenous immunoglobulin), a blood product rich in immune molecules that can heal damaged nerves.
For reference to a doctor skilled in mainstream protocols, contact the Infectious Diseases Society of America. For reference to a doctor willing to treat tick-borne infection beyond the standard guidelines, contact the Lyme Disease Association or the International Lyme and Associated Diseases Society. (See Web Resources, below.)
Web Resources (Back to Top)
* Infectious Diseases Society of America: www.idsociety.org
* Lyme Disease Association: www.lymediseaseassociation.org
* International Lyme and Associated Diseases Society: www.ilads.or
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Monday, March 30, 2009
A Must Read for Everyone !
Hello my friends,
I have borrowed this article from Michealene Cristini Risley. Her blog artice is absolutely a must read for everyone who might like to know about Lyme disease. Kudos to her for doing such a fine job in her article. I originally found it on this link:http://www.huffingtonpost.com/michealene-cristini-risley/lyme---emerging-disease-o_b_180728.html. I always give proper credit to articles I find and use on my blog. The object is to get as much quality information out there as possible. I hope you will take the time to read this article.
Be Well,
Richard
Michealene Cristini Risley
Posted March 30, 2009 | 11:47 AM (EST) BIO Become a Fan Get Email Alerts Bloggers' Index
Lyme - emerging disease or hidden epidemic?
Thomas Gray, the English poet once said, "Ignorance is truly bliss". "Bliss" is a wonderful form of denial if you are in the throes of disease, such as Lyme. The illness can be a painful and debilitating process, fraught with complicated treatments and medical ignorance. One can accept ignorance with an emerging disease, yet not from the organization that is responsible for setting guidelines for treatment such as the Infectious Diseases Society of America:
http://www.idsociety.org/.
One gets angrier when you begin to question the root of that ignorance in the national governing body. Is the behavior based on lack of knowledge or more subversive? Is there an ulterior motive to hide the truth of this ailment? The IDSA guidelines are used by health practitioners to treat the disorder and by many health insurance companies to make coverage decisions. This is the point where ignorance turns into systematic deception, when two parties attempt to squelch doctors who in their treatment have discovered that these guidelines in many cases do not work. These doctors have come under fire, in some cases losing their licenses for assisting people debilitated by this disease. There has been widespread anger by "lymies" (this is what we call ourselves) about controversial treatment options and inadequate guidelines. Still, nothing is being done, and people continue to get sick.
Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..." "The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions." http://www.ilads.org/press_2_07.htm
Several doctors in key roles on the panel were found to have conflicts of interest. "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
It is not just the IDSA, The Center for Disease Control http://www.cdc.gov/ncidod/dvbid/lyme/states the following: "Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." For those of us who have Lyme disease, a few weeks of antibiotics would not begin to attack the source of bacteria let alone the co-infections and dormant phases of the illness. Unfortunately, without proper treatment, the disease takes a stronger hold on the infected; making it much more difficult to cure.
For those of you who are lucky enough to not have any interaction with the disease or people infected, let me explain what Lyme disease is. Lyme disease is a bacterial infection caused by the bacteria Borrelia burgdorferi (Bb) that is commonly contracted from a deer tick bite. Researchers are also discovering that other insects such as; mosquitoes, fleas and lice may also transmit the disease.
Early Lyme disease can produce a wide-range of symptoms and is different in each person. In addition to the initial diagnosis, Lyme can carry many co-infections which can make a person much sicker. The treatment options are varied and most aggressive treatment forms are not supported by traditional western medicine. For now, those of us who have the disease are left on our own to find a treatment that works. It is terribly frightening.
A few years back I had spinal surgery-so I know what serious, debilitating pain is-and I would gladly opt for additional spine surgeries if I could get rid of Lyme disease. It is that debilitating.
Other transmission confirmations that the general public may not be aware of; Lyme disease can be transmitted in uterus, through breast milk and blood transfusions. Some Lyme specialist believes that the disease can be sexually transmitted since the bacteria can be found in saliva and semen; this form of transmission is still in question.
Another troubling aspect of the disease is ability to diagnosis the illness. In many parts of the United States, (and Lyme disease is everywhere) the diagnosis and testing are faulty. In the documentary "Under our Skin" http://www.underourskin.com many of the issues behind this disease are discussed. At one point, in the documentary, a series of "Lymies" show up on the screen. Each person states the number of doctors it took to get a proper diagnosis. Some were searching for years. My search for a diagnosis took five months and twenty-one doctors. Twenty-one doctors in the heart of Silicon Valley and in Stanford Hospitals' backyard. Before I got the diagnosis, I was told that I was pre-menopausal, iron deficient, that I had Addison's disease, Cushing's disease, Adrenal Fatigue and post-trauma from my imprisonment in Zimbabwe: http://www.huffingtonpost.com/michealene-cristini-risley/gratitude-musings-after-_b_62791.html
Other myths that need to be challenged include the statistics on the prevalence of Lyme disease. I contacted the CDC and talked to the San Mateo County Health Department, for the most part they were less than helpful. I was told by the San Mateo County Health Department that I am the only case of Rocky Mountain spotted fever, (another co-infection) in the state of California in over 15 years. I don't believe them. Other thoughts to convey to your physician:
• The number of cases, the geographical scope and the proportion of afflicted that are severe cases needs to be reviewed. Lyme disease is not decreasing, it in increasing. You can get Lyme disease during the winter.
• Over 50% of those people infected by Lyme disease do not get the distinguishing rash or Bull's eye.
• Over 50% of those with Lyme disease get a false-negative on the testing.
We do know that Lyme disease can be debilitating. The disease needs to be researched to figure out all transmission modes for this illness. Since testing for this disease is inadequate, more research needs to be done to determine better testing mechanisms. In my own experience and in reading books such as "Cure Unknown": http://www.cureunknown.com/ so many stories of doctors and facilities that do not believe that the disease exists.
Insurance companies have typically refused paying for treatments. I personally know that insurance companies are refusing many of my costs. This weekend, my insurance company, Blue Shield of California would only pay for 6 pills to rid me of parasites caused by the immune system fallout from Lyme. In order for me to get the proper prescription of the full 30 pills and to rid the parasite, I had to pay over two-thousand dollars for the additional 24 pills. I purchased enough for the weekend and will start to call Blue Shield on Monday. I wish I was kidding.
Many people who have Lyme disease have sounded the alarm, yet the medical establishment is not listening. Why are there so many disbelievers in Western medicine? Why are insurance companies denying the very basic of claims? If the IDSA guidelines are in question, shouldn't the insurance companies be reviewing what is covered?
Two weeks ago, I was so ill with Lyme, that I thought I was going to die. I was getting neurological symptoms, my right leg was caving in, and my mind would not work. I called the following hospitals; Stanford Hospital, Mayo Clinic, University of California-San Francisco, not a one of these top institutions would take me as a Lyme patient. I start to get an inkling what is must have been like at the beginning of the AIDS epidemic.
There are many issues facing our country right now. For me, Lyme disease is at the top of that list. Too many people are becoming debilitated from this disease, some are dying. It is time that the medical establishment takes the politics out of lyme and start practicing they oath they took to help the sick. You can make a difference. Get on-line, call your congress-person, call the White House at (202) 456-1414. Have a conversation with someone who has LYME disease. Help us to take action before Lyme's disease spreads further.
To each his sufferings: all are men,
Condemned alike to groan,
the tender for another's pain;
the unfeeling for his own.
Yet ah! Why should they know their fate?
Since sorrow never comes too late,
And happiness too swiftly flies.
Thought would destroy their paradise.
No more; where ignorance is bliss,
'Tis folly to be wise.
I have borrowed this article from Michealene Cristini Risley. Her blog artice is absolutely a must read for everyone who might like to know about Lyme disease. Kudos to her for doing such a fine job in her article. I originally found it on this link:http://www.huffingtonpost.com/michealene-cristini-risley/lyme---emerging-disease-o_b_180728.html. I always give proper credit to articles I find and use on my blog. The object is to get as much quality information out there as possible. I hope you will take the time to read this article.
Be Well,
Richard
Michealene Cristini Risley
Posted March 30, 2009 | 11:47 AM (EST) BIO Become a Fan Get Email Alerts Bloggers' Index
Lyme - emerging disease or hidden epidemic?
Thomas Gray, the English poet once said, "Ignorance is truly bliss". "Bliss" is a wonderful form of denial if you are in the throes of disease, such as Lyme. The illness can be a painful and debilitating process, fraught with complicated treatments and medical ignorance. One can accept ignorance with an emerging disease, yet not from the organization that is responsible for setting guidelines for treatment such as the Infectious Diseases Society of America:
http://www.idsociety.org/.
One gets angrier when you begin to question the root of that ignorance in the national governing body. Is the behavior based on lack of knowledge or more subversive? Is there an ulterior motive to hide the truth of this ailment? The IDSA guidelines are used by health practitioners to treat the disorder and by many health insurance companies to make coverage decisions. This is the point where ignorance turns into systematic deception, when two parties attempt to squelch doctors who in their treatment have discovered that these guidelines in many cases do not work. These doctors have come under fire, in some cases losing their licenses for assisting people debilitated by this disease. There has been widespread anger by "lymies" (this is what we call ourselves) about controversial treatment options and inadequate guidelines. Still, nothing is being done, and people continue to get sick.
Last May, Connecticut Attorney General Richard Blumenthal announced that his antitrust investigation "uncovered serious flaws in the Infectious Disease Society of America's process for writing its 2006 Lyme disease guidelines..." "The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care," Blumenthal wrote. "They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions." http://www.ilads.org/press_2_07.htm
Several doctors in key roles on the panel were found to have conflicts of interest. "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion."
It is not just the IDSA, The Center for Disease Control http://www.cdc.gov/ncidod/dvbid/lyme/states the following: "Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics." For those of us who have Lyme disease, a few weeks of antibiotics would not begin to attack the source of bacteria let alone the co-infections and dormant phases of the illness. Unfortunately, without proper treatment, the disease takes a stronger hold on the infected; making it much more difficult to cure.
For those of you who are lucky enough to not have any interaction with the disease or people infected, let me explain what Lyme disease is. Lyme disease is a bacterial infection caused by the bacteria Borrelia burgdorferi (Bb) that is commonly contracted from a deer tick bite. Researchers are also discovering that other insects such as; mosquitoes, fleas and lice may also transmit the disease.
Early Lyme disease can produce a wide-range of symptoms and is different in each person. In addition to the initial diagnosis, Lyme can carry many co-infections which can make a person much sicker. The treatment options are varied and most aggressive treatment forms are not supported by traditional western medicine. For now, those of us who have the disease are left on our own to find a treatment that works. It is terribly frightening.
A few years back I had spinal surgery-so I know what serious, debilitating pain is-and I would gladly opt for additional spine surgeries if I could get rid of Lyme disease. It is that debilitating.
Other transmission confirmations that the general public may not be aware of; Lyme disease can be transmitted in uterus, through breast milk and blood transfusions. Some Lyme specialist believes that the disease can be sexually transmitted since the bacteria can be found in saliva and semen; this form of transmission is still in question.
Another troubling aspect of the disease is ability to diagnosis the illness. In many parts of the United States, (and Lyme disease is everywhere) the diagnosis and testing are faulty. In the documentary "Under our Skin" http://www.underourskin.com many of the issues behind this disease are discussed. At one point, in the documentary, a series of "Lymies" show up on the screen. Each person states the number of doctors it took to get a proper diagnosis. Some were searching for years. My search for a diagnosis took five months and twenty-one doctors. Twenty-one doctors in the heart of Silicon Valley and in Stanford Hospitals' backyard. Before I got the diagnosis, I was told that I was pre-menopausal, iron deficient, that I had Addison's disease, Cushing's disease, Adrenal Fatigue and post-trauma from my imprisonment in Zimbabwe: http://www.huffingtonpost.com/michealene-cristini-risley/gratitude-musings-after-_b_62791.html
Other myths that need to be challenged include the statistics on the prevalence of Lyme disease. I contacted the CDC and talked to the San Mateo County Health Department, for the most part they were less than helpful. I was told by the San Mateo County Health Department that I am the only case of Rocky Mountain spotted fever, (another co-infection) in the state of California in over 15 years. I don't believe them. Other thoughts to convey to your physician:
• The number of cases, the geographical scope and the proportion of afflicted that are severe cases needs to be reviewed. Lyme disease is not decreasing, it in increasing. You can get Lyme disease during the winter.
• Over 50% of those people infected by Lyme disease do not get the distinguishing rash or Bull's eye.
• Over 50% of those with Lyme disease get a false-negative on the testing.
We do know that Lyme disease can be debilitating. The disease needs to be researched to figure out all transmission modes for this illness. Since testing for this disease is inadequate, more research needs to be done to determine better testing mechanisms. In my own experience and in reading books such as "Cure Unknown": http://www.cureunknown.com/ so many stories of doctors and facilities that do not believe that the disease exists.
Insurance companies have typically refused paying for treatments. I personally know that insurance companies are refusing many of my costs. This weekend, my insurance company, Blue Shield of California would only pay for 6 pills to rid me of parasites caused by the immune system fallout from Lyme. In order for me to get the proper prescription of the full 30 pills and to rid the parasite, I had to pay over two-thousand dollars for the additional 24 pills. I purchased enough for the weekend and will start to call Blue Shield on Monday. I wish I was kidding.
Many people who have Lyme disease have sounded the alarm, yet the medical establishment is not listening. Why are there so many disbelievers in Western medicine? Why are insurance companies denying the very basic of claims? If the IDSA guidelines are in question, shouldn't the insurance companies be reviewing what is covered?
Two weeks ago, I was so ill with Lyme, that I thought I was going to die. I was getting neurological symptoms, my right leg was caving in, and my mind would not work. I called the following hospitals; Stanford Hospital, Mayo Clinic, University of California-San Francisco, not a one of these top institutions would take me as a Lyme patient. I start to get an inkling what is must have been like at the beginning of the AIDS epidemic.
There are many issues facing our country right now. For me, Lyme disease is at the top of that list. Too many people are becoming debilitated from this disease, some are dying. It is time that the medical establishment takes the politics out of lyme and start practicing they oath they took to help the sick. You can make a difference. Get on-line, call your congress-person, call the White House at (202) 456-1414. Have a conversation with someone who has LYME disease. Help us to take action before Lyme's disease spreads further.
To each his sufferings: all are men,
Condemned alike to groan,
the tender for another's pain;
the unfeeling for his own.
Yet ah! Why should they know their fate?
Since sorrow never comes too late,
And happiness too swiftly flies.
Thought would destroy their paradise.
No more; where ignorance is bliss,
'Tis folly to be wise.
Friday, November 7, 2008
Hello everyone.....sorry I have been gone!
Hi friends,
Please accept my apologies for not posting some new information for quite sometime. Having chronic Lyme disease is a reality I have to deal with. Sometimes, it flares up and it tends to take you down for a while. I have been experiencing a real flareup the past few months. I merely took a normal step one night and broke two bones in my right foot. I didn't drop anything on it or anything, it just broke two bones. I was having some problems of swelling in my feet and legs, but it has been attributed to erffects of Lyme disease. I got to have a cast for six weeks, but everything is better in that area right now. For those of you raeding this that have Lyme disease you will know what I mean when I say, I have had pain from the top of my head to the tips of my toes. It hurts to move. I am going to water therapy to help, but the process is slow. Nevertheless, I will try and introduce some new products, websites and and some current activity about Lyme disease treatment over the nest couple of weeks.
I want you to check out two websites of mine.http://www.Bowmanloansplus.com and http://www.rbpharmacywarehouse.com. If you are in the need of a home equity loan or you need to refinance your mortgage I want you to try www.bowmanloansplus.com. I know banks have been very difficult to deal with, but things are loosening up a bit and this website can help you take advantage of many loan products.
The other site www.rbpharmacywarehouse.com is a great way to purchase some of the most popular type of prescription drugs. The prices are hard to beat and the service is outstanding. I order 800 mg Ibuprophen all the time from this site. Please check it out. I will update you with some great products on the next post.
I will talk with you again soon.
Be well,
Rich Bowman
p.s. If there is anyone out ther who has Lyme disease, who is having good luck with a product or treatment, I would love to hear from you. If you need someone to talk to about your disease, I would love to talk with you anytime. I would love to hear about a treatment for chronic Lyme disease and what type of symptoms that you have.
Please accept my apologies for not posting some new information for quite sometime. Having chronic Lyme disease is a reality I have to deal with. Sometimes, it flares up and it tends to take you down for a while. I have been experiencing a real flareup the past few months. I merely took a normal step one night and broke two bones in my right foot. I didn't drop anything on it or anything, it just broke two bones. I was having some problems of swelling in my feet and legs, but it has been attributed to erffects of Lyme disease. I got to have a cast for six weeks, but everything is better in that area right now. For those of you raeding this that have Lyme disease you will know what I mean when I say, I have had pain from the top of my head to the tips of my toes. It hurts to move. I am going to water therapy to help, but the process is slow. Nevertheless, I will try and introduce some new products, websites and and some current activity about Lyme disease treatment over the nest couple of weeks.
I want you to check out two websites of mine.http://www.Bowmanloansplus.com and http://www.rbpharmacywarehouse.com. If you are in the need of a home equity loan or you need to refinance your mortgage I want you to try www.bowmanloansplus.com. I know banks have been very difficult to deal with, but things are loosening up a bit and this website can help you take advantage of many loan products.
The other site www.rbpharmacywarehouse.com is a great way to purchase some of the most popular type of prescription drugs. The prices are hard to beat and the service is outstanding. I order 800 mg Ibuprophen all the time from this site. Please check it out. I will update you with some great products on the next post.
I will talk with you again soon.
Be well,
Rich Bowman
p.s. If there is anyone out ther who has Lyme disease, who is having good luck with a product or treatment, I would love to hear from you. If you need someone to talk to about your disease, I would love to talk with you anytime. I would love to hear about a treatment for chronic Lyme disease and what type of symptoms that you have.
Saturday, February 16, 2008
New test for Lyme disease not being used?
Published: Friday, February 15, 2008,theledger.com
Local Lab's Discovery Waits for Buyers
LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.
After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.
"These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."
The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.
The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.
"I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."
Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.
Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.
Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.
Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.
That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.
If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.
The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.
The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.
The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.
Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.
Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.
The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.
From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.
"She's gotten her life back. She's back in graduate school," he said.
A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.
Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.
Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.
"He's developed a reputation," Long added. "There's room in the marketplace for another company."
[ Kevin Bouffard can be reached at kevin.bouffard@theledger.com or at 863-802-7591. ]
Local Lab's Discovery Waits for Buyers
LAKE ALFRED | A struggling laboratory here is learning it may require more than building a better mousetrap to get the world beating a path to its door.
After developing an improved diagnostic test for Lyme disease, Central Florida Research Inc. in Lake Alfred is still waiting for a crowd at its doorstep.
"These last seven months, nobody in this business has gotten paid," said Tom Long, 55, the lab's executive director. "The revenue has been just enough to cover our expenses."
The staff has shrunk from eight people to three in the past year, Long said. He hopes the new diagnostic tool, called a "Lyme Antigen Test," will make Central Florida Research profitable.
The lab staff developed the antigen test under the direction of its medical director, Clifford Threlkeld, a pathologist and also lab director for the Heart of Florida Regional Medical Center in Davenport. Central Florida Research has applied for a patent, which it hopes to get in 2009.
"I do think it will be successful," Threlkeld said. "It's not the be-all-to-end-all, but it definitely adds to what's out there."
Lyme is a bacterial disease most commonly spread through the bite of a deer tick. In its early stages, the disease causes flu-like symptoms, including fever, fatigue and muscle or joint pain.
Left untreated, the bacteria can cause chronic problems in the heart and nervous system, including cardiac inflammation and paralysis. It can be fatal.
Because Lyme disease shares symptoms with other illnesses, it's very difficult to diagnose.
Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto, Calif., the leading U.S. lab for Western blot screening.
That high rate of "false negatives" - people who test negative despite having the disease - also causes problems for Lyme sufferers, said Lori Hoerl of the Florida Lyme Advocacy Group in Jacksonville, who has the disease.
If a doctor later diagnoses Lyme disease, insurance companies will use a negative Western blot to deny paying for treatment, she said.
The Central Florida Research test represents an improvement because it detects the actual presence of the Lyme bacteria, said Pat Phillips, its lab director. The Western blot detects only antibodies, or substances the body produces in reaction to the bacteria.
The Lyme Antigen Test has proven to be about 90 percent accurate, Long said.
The lab finished development of the test a year ago, he said, but it took seven months to get state and federal licensing to perform it. Since then, Central Florida Research has been trying to spread the word among front-line doctors who treat the disease.
Besides word of mouth, the lab team has an information booth it has taken to medical conferences and seminars, such as a Jan. 19 event in St. Peterburg, he said.
Central Florida Research does about 10 to 20 tests a day, but it has the capacity to do 100 tests, Long said. It charges $250 per test, slightly higher than a typical lab fee.
The lab's Web site, www.centralfloridaresearch.com, also has helped market the test, he added. It's gotten referrals worldwide, including Chile, England, France and Germany.
From a personal standpoint, the results have been satisfying. A Winter Haven woman in her 30s had led an active, vibrant life until last year, when chronic fatigue forced her to drop out of graduate school, Long said. Previous tests were negative, but the antigen test showed she did have the Lyme bacteria.
"She's gotten her life back. She's back in graduate school," he said.
A 60-year-old woman from Chile also had been battling pain and fatigue for years but tested negative for Lyme, Long said. She's undergoing successful treatment after the antigen test proved positive.
Despite the state and federal certifications and the clinical results, Long, Hoerl and Threlkeld agreed Central Florida Research needs to gain the trust of the medical community before the test becomes widely accepted.
Long said he believes the small Lake Alfred lab can develop the same high regard enjoyed by Harris' IGeneX Labs.
"He's developed a reputation," Long added. "There's room in the marketplace for another company."
[ Kevin Bouffard can be reached at kevin.bouffard@theledger.com or at 863-802-7591. ]
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About Me
- rbowman838
- Pueblo, Colorado, United States
- I am a Chronic Lyme disease patient. I was bitten by a tick in 2001 and have been very sick ever since. Subsequently, you could say I am a Lyme disease junkie.I thirst for any information about it,any treatments, research etc. It has been a life altering experience, which has kept me away from our business and at home most of the time. I use to own A-1 Barricade and Sign Inc. here in Pueblo, Co, but because of the Lyme disease, my sons are running the business for the most part with my wife. I have been married for 48 years to a wonderful woman who is also my best friend. We have five children, all grown. Four boys live here in Pueblo and my only daughter lives in Bonney Lake, Washington. We miss her a lot. I have 7 grandchildren, which are the greatest of all. They are all exceptionally beautiful! The last thing you need to know about me is that I am proud to be a member of The Church of Jesus Christ of Latter-Day Saints. Because of this I have the knowledge that life is eternal and that it does not end here, but it will go on after death because of the Atonement of Jesus Christ. This truth I bear witness of!