Hit List

Lyme disease is a common tick-borne infection that generates an uncommon amount of angst, hysteria, and bizarre behavior among people who think they might have the infection. The first inkling I had of this psychosocial reaction to Borrelia burgdorferi was a long-ago phone call from a local veterinarian. She called to ask about a meeting I was organizing and, in the course of the conversation, she mentioned that she had recently injected herself with a crude canine vaccine against Lyme disease. I thought that was a foolish precaution against an infection that is antibiotic-responsive, non-fatal, non-communicable, and geographically- and seasonally-limited.

But then I started to encounter people who were far crazier or just plain malevolent.

There was Janice Beers, a lawyer, who ran an Ohio support group for people who may or may not have had Lyme disease. Despite the diagnostics and the assurances of her two physician sons, she insisted she had Lyme disease. That singular obsession seemed to have led her to conspiracy theories about Lyme disease. Paranoia and delusion followed. She wrote 30-page tomes about these conspiracies and her painstakingly gathered evidence of those conspiracies, which she mailed to me and numerous other scientists, officials and politicians. (Fortunately, this was before the widespread use of blogs and websites so none of her depressingly disturbed thoughts are preserved online.) Evidently, the paranoia became unbearable and she fled her house, her family, and the state. A call to me from a family member suggested she might be headed our way—possibly with a gun—so the local police were alerted.

She never showed up and has long since disappeared from that patient/activist fantasy world called, "Lymeland." Perhaps her physician sons managed to get her the psychiatric care she so obviously needed.

Then along came Karen Forschner, another self-appointed activist for Lyme disease patients. She started one of the first Lyme disease organizations in the U.S., but her message and her personae quickly inspired some of her early backers in the scientific community to abandon her foundation and start their own. Indeed, I found her to be one of most deceitful, despicable, deluded people I have ever had the misfortune to meet. (And, in 50 years, across 32 states and 26 countries, I've had plenty of opportunities to meet people. Karen still takes the prize.)

She wanted cooperation—on her terms—and she didn't want any questions. I won't give her the first and asked too many of the second, which led to angry, threatening phone calls to my boss and wild accusations on the Internet. Eventually, she tried a $2 million lawsuit. That might have worked—bankruptcy has a way of refocusing the mind—but for the interventions of the ACLU and the pro bono work of Morrison & Foerster. They knew a petty assault on free speech when they saw one and really seemed to enjoy crushing this one. (“In the case of Dr. McSweegan, the Forschners’ objective was to silence him, thereby simultaneously ending his criticisms and sending a message to others in the Lyme disease community. When Dr. McSweegan refused to capitulate, the Forschners brought this lawsuit.” C.A. No. 97-2450-WMN, D.Md.)

The suit was tossed out of court. Karen and her foundation have since dropped off the map, but there is still plenty of belligerent and disturbing behavior in Lymeland.

In late 2003, for example, a woman named Kathleen Dickson, started peppering a Usenet group with my name, accusing me of all the crimes and misdeeds Karen Forschner had previously accused me of committing. I've never met this woman, but she's a friend of Karen's and perhaps she felt compelled to carry on the tradition of insane behaviorin the name of Lyme disease.

Her online rants were briefly interrupted when she was arrested for doing to a Connecticut Assistant Attorney General what she was doing to me. She was forcefully confined, and presumably medicated, and then given "accelerated rehabilitation." The rehab didn't take because she's back howling on the Web. The last time I looked, she's posted my name on Usenet groups some 1,180 times. That may top the rate for mentions of Allen Steere or Gary Wormser.

Even more disturbing than her regular Usenet nonsense is a messy website she has assembled detailing all the related crimes and conspiracies supposedly perpetrated by me, my colleagues, the federal government, insurance companies, Yale University, her ex-husband and various family members, Jews, the FBI, various Ct. politicians and lawyers, and....well, everybody. According to Dickson, everyone is stupid and corrupt (except her) and involved in a massive conspiracy about Lyme disease, vaccines and bioweapons.

About the same time that Kathleen Dickson was digitally foaming at the mouth, another woman appeared online to parrot her accusations about me and Lyme disease. At first I thought she might be an online alter ego for Dickson. But Lisa Masterson (aka Elena Cook and LymeRayja) is apparently real, American according to British colleagues, and a total wackjob. The mental health folks in London scooped her up at one point, but they didn’t seem to have any more success treating her than the U.S. authorities did treating Dickson.

Apparently, Ms. Masterson/Cook now spends her time producing fact-free, conspiracy theories about Lyme disease, stalking, eavesdropping, and bioweapons for Wikipedia and other Lyme websites. From her twisted view of the world: I’m some kind of biowarfare specialist because I wrote a novel about terrorism and because I’ve been to Russia; One of my colleagues is an anthrax expert because a stack of anthrax research applications sat in a filing cabinet outside his office (Shhh! Don’t tell her many of those grants and applications sat in my filing cabinet back when the portfolio was called Bacterial Pathogenesis.); and anyone who works in a building that also houses a BSL-4 lab or suite is a bioweapons expert, including the janitor, the secretary, the guy down the hall working on E. coli, and the guy working on the epidemiology of influenza.

There is little reprieve from people with Internet connections and obsessions about Lyme disease.

Yet another online conspiracy nut is yet another middle-aged woman in Katonah, New York named Carla Kruytbosch (aka Snappy, Snapcrackle and Freyfaxi). Her particular obsession is that Lyme disease is an engineered bioweapon that escaped from Nazi doctors working on New York's Plum Island. Online, she lists herself as a professor and has posted several fantastic versions of her Lyme disease conspiracy on Wikipedia. (This again shows that Wikipedia's authors are often fakes or nuts, and what they write is usually inaccurate, outrageous or defamatory.)

She recently demanded to know, “When is this dangerous rip off [off] the American taxpayer going to stop? When are we going to get a cure instead of more billion dollar designer bugs?”

There is a cure; it’s just a shot of thorazine away.

According to a blurb from Westchester Community College, she once taught web design and computer graphics, has a web consulting business called Freyfaxi Media, which does not seem to exist, and a web-based teaching site, www.thenetcollege.com, which does not seem to function. I guess she's too busy trying to rewrite reality to do any real work. Or maybe she was kicked in the head too many times by the mythical Icelandic horse, Freyfaxi. (She recently denied any encounters with mythical creatures, insisting it's a "ridiculous lie that I had been kicked in the head by a horse.") Okay....

It never stops. This month’s prize-winning nut is Lucy Barnes of Centreville, Maryland. A relentlessly babbling source of bad ideas and bad information on LymeNet, she’s managed to annoy just about everyone politician in Annapolis and every public health official in the state with her rants and her lies. A former park ranger in Virginia, she apparently had a stroke—probably while trying to stuff too much of herself into standard issue khaki shorts—and blamed the event on Lyme disease.

Now she spends her nights—most Lyme activists appear to be nocturnal, hiding indoors from ticks during the day and pounding out lunatic testimonials after dark—writing lies about people she doesn’t know and things she doesn’t understand.

Her latest missive urges her followers to use her lies in conversations with their congressional representatives about Lyme disease, the Infectious Diseases Society of America, and, for some reason, me.

According to Ranger Barnes, I’m the “head of the NIH Lyme Disease program,” though there is no such position at NIH, and I haven’t done any Lyme-related work at NIH in 13 years. She also says I’ve been demoted, but the only changes in pay I’m aware of are salary increases over the last 20 years. I think I, and the media, would have noticed a demotion. She says I’ve “continued to work closely with the IDSA on the development of their Lyme disease policies,” but I’m not a member of the IDSA, an ID Fellow, a clinician, an IDSA staffer, or one of the authors of the IDSA Guidelines. Does the IDSA even have any “Lyme disease policies”?

She says I “self-published” a novel, but 20 seconds on the Internet would show the Maryland Writers Association and First Books, Inc. published it. I don’t have the money or vanity for such extravagances. I guess Smokey the Barnes only uses the Internet to generate fantasies, not check facts. She used cut-and-paste quotes from a 2003 Washington Post story to suggest I’m a lazy, do-nothing employee. I’m guessing Barnes is either the pathological liar she appears to be or she’s a moron. Everyone else got the point of thePost story and the original CBS News story (viewer: “I am demanding the resignation of Dr. McSweegan's boss who has shown gross incompetence in the handling of my money.”). The Congress certainly got the point. Evidently, Barnes is dumber than the average TV viewer and newspaper reader.

What do you do about people like this? You can’t sue them; they don’t have enough money to make it worthwhile, and a defense of emotional or mental incompetence would probably be compelling. She thinks I exhibit “bizzare behavior” and “could be dangerous” so I just may have to content myself with stopping in Centreville to punch her in the face the next time I drive over to Rehoboth. Would that be considered bizarre behavior or just proof of being dangerous? Maybe I could just show up at the next meeting of her support group, “Eastern Shore Hicks with Ticks.” Do they serve coffee and donuts?

What is it about white, middle-class, college-educated, middle-aged women that compels them to use a common infectious disease as the vehicle for their emotional and psychological problems? Why the endless lies and absurd street theater? Why are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs? Barnes accuses me and others of trying to discredit Lyme patients, but it’s clear people like her do a much more effective job of undermining any political and social support for Lyme disease.

Whatever the reasons, it's very likely that Lyme-obsessed nuts will continue to appear. Today, the unregulated online culture of blogs, Usenet posts, websites, chat rooms, web rings, Wikipedia entries, and virtual support groups seems ideally designed to sustain and propagate hysteria, disinformation, quackery and hatred.

June 2008

Edward McSweegan, PhD

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EDITED VERSION

The Wacky World of Lyme Disease

Lyme disease is a common tick-borne infection that generates an uncommon amount of angst, hysteria, and bizarre behavior among people who think they might have the infection. The first inkling I had of this psychosocial reaction to Borrelia burgdorferi was a long-ago phone call from a local veterinarian. She called to ask about a meeting I was organizing and, in the course of the conversation, she mentioned that she had recently injected herself with a crude canine vaccine against Lyme disease. I thought that was a foolish precaution against an infection that is antibiotic-responsive, non-fatal, non-communicable, and geographically- and seasonally-limited.

But then I started to encounter people who were far crazier or just plain malevolent.

There was Janice Beers, a lawyer, who ran an Ohio support group for people who may or may not have had Lyme disease. Despite the diagnostics and the assurances of her two physician sons, she insisted she had Lyme disease. That singular obsession seemed to have led her to conspiracy theories about Lyme disease. Paranoia and delusion followed. She wrote 30-page tomes about these conspiracies and her painstakingly gathered evidence of those conspiracies, which she mailed to me and numerous other scientists, officials and politicians. (Fortunately, this was before the widespread use of blogs and websites so none of her depressingly disturbed thoughts are preserved online.) Evidently, the paranoia became unbearable and she fled her house, her family, and the state. A call to me from a family member suggested she might be headed our way—possibly with a gun—so the local police were alerted.

She never showed up and has long since disappeared from that patient/activist fantasy world called, "Lymeland." Perhaps her physician sons managed to get her the psychiatric care she so obviously needed.

Then along came Karen Forschner, another self-appointed activist for Lyme disease patients. She started one of the first Lyme disease organizations in the U.S., but her message and her personae quickly inspired some of her early backers in the scientific community to abandon her foundation and start their own. Indeed, I found her to be one of most deceitful, despicable, deluded people I have ever had the misfortune to meet. (And, in 50 years, across 32 states and 26 countries, I've had plenty of opportunities to meet people. Karen still takes the prize.)

She wanted cooperation—on her terms—and she didn't want any questions. I won't give her the first and asked too many of the second, which led to angry, threatening phone calls to my boss and wild accusations on the Internet. Eventually, she tried a $2 million lawsuit. That might have worked—bankruptcy has a way of refocusing the mind—but for the interventions of the ACLU and the pro bono work of Morrison & Foerster. They knew a petty assault on free speech when they saw one and really seemed to enjoy crushing this one. (“In the case of Dr. McSweegan, the Forschners’ objective was to silence him, thereby simultaneously ending his criticisms and sending a message to others in the Lyme disease community. When Dr. McSweegan refused to capitulate, the Forschners brought this lawsuit.” C.A. No. 97-2450-WMN, D.Md.)

The suit was tossed out of court. Karen and her foundation have since dropped off the map, but there is still plenty of belligerent and disturbing behavior in Lymeland.

In late 2003, for example, a woman named Kathleen Dickson, started peppering a Usenet group with my name, accusing me of all the crimes and misdeeds Karen Forschner had previously accused me of committing. I've never met this woman, but she's a friend of Karen's and perhaps she felt compelled to carry on the tradition of insane behavior in the name of Lyme disease.

Her online rants were briefly interrupted when she was arrested for doing to a Connecticut Assistant Attorney General what she was doing to me. She was forcefully confined, and presumably medicated, and then given "accelerated rehabilitation." The rehab didn't take because she's back howling on the Web. The last time I looked, she's posted my name on Usenet groups some 1,180 times. That may top the rate for mentions of Allen Steere or Gary Wormser.

Even more disturbing than her regular Usenet nonsense is a messy website she has assembled detailing all the related crimes and conspiracies supposedly perpetrated by me, my colleagues, the federal government, insurance companies, Yale University, her ex-husband and various family members, Jews, the FBI, various Ct. politicians and lawyers, and....well, everybody. According to Dickson, everyone is stupid and corrupt (except her) and involved in a massive conspiracy about Lyme disease, vaccines and bioweapons.

About the same time that Kathleen Dickson was digitally foaming at the mouth, another woman appeared online to parrot her accusations about me and Lyme disease. At first I thought she might be an online alter ego for Dickson. But Lisa Masterson (aka Elena Cook and LymeRayja) is apparently real, American according to British colleagues, and a total wackjob. The mental health folks in London scooped her up at one point, but they didn’t seem to have any more success treating her than the U.S. authorities did treating Dickson.

Apparently, Ms. Masterson/Cook now spends her time producing fact-free, conspiracy theories about Lyme disease, stalking, eavesdropping, and bioweapons for Wikipedia and other Lyme websites. From her twisted view of the world: I’m some kind of biowarfare specialist because I wrote a novel about terrorism and because I’ve been to Russia; One of my colleagues is an anthrax expert because a stack of anthrax research applications sat in a filing cabinet outside his office (Shhh! Don’t tell her many of those grants and applications sat in my filing cabinet back when the portfolio was called Bacterial Pathogenesis.); and anyone who works in a building that also houses a BSL-4 lab or suite is a bioweapons expert, including the janitor, the secretary, the guy down the hall working on E. coli, and the guy working on the epidemiology of influenza.

There is little reprieve from people with Internet connections and obsessions about Lyme disease.

Yet another online conspiracy nut is yet another middle-aged woman in Katonah, New York named Carla Kruytbosch (aka Snappy, Snapcrackle and Freyfaxi). Her particular obsession is that Lyme disease is an engineered bioweapon that escaped from Nazi doctors working on New York's Plum Island. Online, she lists herself as a professor and has posted several fantastic versions of her Lyme disease conspiracy on Wikipedia. (This again shows that Wikipedia's authors are often fakes or nuts, and what they write is usually inaccurate, outrageous or defamatory.)

She recently demanded to know, “When is this dangerous rip off [off] the American taxpayer going to stop? When are we going to get a cure instead of more billion dollar designer bugs?”

There is a cure; it’s just a shot of thorazine away.

According to a blurb from Westchester Community College, she once taught web design and computer graphics, has a web consulting business called Freyfaxi Media, which does not seem to exist, and a web-based teaching site, www.thenetcollege.com, which does not seem to function. I guess she's too busy trying to rewrite reality to do any real work. Or maybe she was kicked in the head too many times by the mythical Icelandic horse, Freyfaxi. (She recently denied any encounters with mythical creatures, insisting it's a "ridiculous lie that I had been kicked in the head by a horse.") Okay....

It never stops. This month’s prize-winning nut is Lucy Barnes of Centreville, Maryland. A relentlessly babbling source of bad ideas and bad information on LymeNet, she’s managed to annoy just about everyone politician in Annapolis and every public health official in the state with her rants and her lies. A former park ranger in Virginia, she apparently had a stroke—probably while trying to stuff too much of herself into standard issue khaki shorts—and blamed the event on Lyme disease.

Now she spends her nights—most Lyme activists appear to be nocturnal, hiding indoors from ticks during the day and pounding out lunatic testimonials after dark—writing lies about people she doesn’t know and things she doesn’t understand.

Her latest missive urges her followers to use her lies in conversations with their congressional representatives about Lyme disease, the Infectious Diseases Society of America, and, for some reason, me.

According to Ranger Barnes, I’m the “head of the NIH Lyme Disease program,” though there is no such position at NIH, and I haven’t done any Lyme-related work at NIH in 13 years. She also says I’ve been demoted, but the only changes in pay I’m aware of are salary increases over the last 20 years. I think I, and the media, would have noticed a demotion. She says I’ve “continued to work closely with the IDSA on the development of their Lyme disease policies,” but I’m not a member of the IDSA, an ID Fellow, a clinician, an IDSA staffer, or one of the authors of the IDSA Guidelines. Does the IDSA even have any “Lyme disease policies”? She says I “self-published” a novel, but 20 seconds on the Internet would show the Maryland Writers Association and First Books, Inc. published it. I don’t have the money or vanity for such extravagances. I guess Smokey the Barnes only uses the Internet to generate fantasies, not check facts. She used cut-and-paste quotes from a 2003 Washington Post story to suggest I’m a lazy, do-nothing employee. I’m guessing Barnes is either the pathological liar she appears to be or she’s a moron. Everyone else got the point of the Post story and the original CBS News story (viewer: “I am demanding the resignation of Dr. McSweegan's boss who has shown gross incompetence in the handling of my money.”). The Congress certainly got the point. Evidently, Barnes is dumber than the average TV viewer and newspaper reader.

What is it about white, middle-class, college-educated, middle-aged women that compels them to use a common infectious disease as the vehicle for their emotional and psychological problems? Why the endless lies and absurd street theater? Why are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs? Barnes accuses me and others of trying to discredit Lyme patients, but it’s clear people like her do a much more effective job of undermining any political and social support for Lyme disease.

Whatever the reasons, it's very likely that Lyme-obsessed nuts will continue to appear. Today, the unregulated online culture of blogs, Usenet posts, websites, chat rooms, web rings, Wikipedia entries, and virtual support groups seems ideally designed to sustain and propagate hysteria, disinformation, quackery and hatred.

June 2008

Paragraph removed:

"What do you do about people like this? You can’t sue them; they don’t have enough money to make it worthwhile, and a defense of emotional or mental incompetence would probably be compelling. She thinks I exhibit “bizzare behavior” and “could be dangerous” so I just may have to content myself with stopping in Centreville to punch her in the face the next time I drive over to Rehoboth. Would that be considered bizarre behavior or just proof of being dangerous? Maybe I could just show up at the next meeting of her support group, “Eastern Shore Hicks with Ticks.” Do they serve coffee and donuts?"

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Prior to the addition of new target- Lucy Barnes. May 14, 2008

"The Wacky World of Lyme Disease”

Lyme disease is a common tick-borne infection that generates an uncommon amount of angst, hysteria, and bizarre behavior among people who think they might have the infection. The first inkling I had of this psychosocial reaction to Borrelia burgdorferi was a phone call from a local veterinarian. She called to ask about a meeting I was organizing and, in the course of the conversation, she mentioned that she had recently injected herself with a crude canine vaccine against Lyme disease. I thought that was a foolish precaution against an infection that is antibiotic-responsive, non-fatal, non-communicable, and geographically- and seasonally-limited.

But then I started to encounter far crazier people. There was Janice Beers, a lawyer, who ran a Ohio support group for people who may or may not have had Lyme disease. Despite the diagnostics and the assurances of her two physician sons, she insisted she had Lyme disease. That singular obsession seemed to have led her to conspiracy theories about Lyme disease. Paranoia and delusion followed. She wrote 30-page tomes about these conspiracy theories and her painstakingly gathered evidence of those conspiracies, which she mailed to me and numerous other scientists, officials and politicians. (Fortunately, this was before the widespread use of blogs and websites so none of her depressing, disturbed thoughts are preserved online.) Evidently, the paranoia became unbearable and she fled her house, her family, and the state. A call to me from a family member suggested she might be headed our way—possibly with a gun—so the local police were alerted.

She never showed up and has long since disappeared from that patient/activist fantasy world called, "Lymeland." Perhaps her physician sons managed to get her the psychiatric care she so obviously needed.

Then along came Karen Forschner, another self-appointed activist for Lyme disease patients. She started one of the first Lyme disease organizations in the U.S., but her message and her personae quickly inspired some of her early backers in the scientific community to abandon her foundation and start their own. Indeed, I found her to be one of most deceitful, despicable, deluded people I have ever had the misfortune to meet. (And, in 50 years, across 32 states and 26 countries, I've had plenty of opportunities to meet people. Karen still takes the prize.)

She wanted cooperation—on her terms—and she didn't want any questions. I won't give her the first and asked too many of the second, which led to angry, threatening phone calls to my boss and wild accusations on the Internet. Eventually, she tried a $2 million lawsuit. That might have worked—bankruptcy has a way of refocusing the mind—but for the interventions of the ACLU and the pro bono work of Morrison & Foerster. They knew a petty assault on free speech when they saw one and really seemed to enjoy crushing this one. (Now I carry $2 million worth of umbrella and professional liability insurance.)