Don’t forget our meeting this Saturday, April 28, 2018 at Pinney Library. Dr. Coleman is speaking.
Details here: https://madisonarealymesupportgroup.com/2018/04/02/april-2018-support-meeting-dr-coleman/
April Support Group Meeting Reminder
April 24, 2018
Tick-borne Relapsing Fever Found in Austin, Texas Caves
April 23, 2018
Rare tickborne disease found in Austin-area caves
April 18, 2018
A rare tickborne disease commonly associated with sleeping in rustic mountain cabins has shown up in caves around Austin, Texas, potentially placing cave workers and the public at risk for infection.
According to researchers, three people working in caves in the Austin area were diagnosed with tickborne relapsing fever (TBRF) last year, and two more tested positive for antibodies against the Borrelia bacteria that cause the disease.
The infections were identified by Austin Public Health (APH) and occurred mostly in people who had given guided cave tours, according to Stephanie B. Campbell, DVM, MPH, CDC Epidemic Intelligence Service officer, and colleagues.
Campbell summarized an investigation into the infections during a presentation at the annual EIS conference in Atlanta. She told Infectious Disease News that TBRF has been documented before in Texas caves, though it is unclear whether it has ever been reported in Austin-area caves.
Researchers said the emergence of a rare tickborne disease in caves around Austin, Texas, poses a potential risk to cave workers and the public. Source: Adobe Stock
The disease is rare, generally occurring in people who are bitten during the night by Ornithodoros ticks while sleeping in rodent-infested cabins or other rustic buildings where rodents have built nests, according to the CDC. The soft-bodied ticks — different from hard-body ticks like the ones that cause Lyme disease — live among rodents, feeding on them as they sleep. Tick and animal species were not collected as part of the investigation, so the report by Campbell and colleagues did not include which ticks may have been involved and what animals they were feeding on. But Campbell said O. parkeri ticks are found in Texas.
In the United States, TBRF is most common in the West, according to the CDC. It has an incubation period of 7 days, followed by a telltale pattern of fever that comes and goes, lasting for roughly 3 days, followed by 7 days without fever, then 3 more days of fever, the CDC explained. Patients who are not treated with antibiotics may experience the process several times. Symptoms also include headache, body aches, nausea and vomiting. Campbell said the symptomatic patients in the current study were treated with doxycycline.
For their investigation, Campbell and colleagues interviewed and tested the serum of 44 employees doing cave-related work for eight organizations in three Austin area counties. According to Campbell, occupations included guide, biologist, park ranger, natural resource management and scientist.
Thirty-three participants had entered 89 different caves in the previous 12 months, with the five seropositive participants entering significantly more caves than those whose serum was negative, 23.6 vs. 11.7 (P = .04), Campbell and colleagues reported. Four of the seropositive employees gave tours. Campbell and colleagues preliminarily identified five caves that were most frequently entered — many of them in public use and open for tours — and categorized them as potentially high-risk for the TBRF.
An article written by the researchers that outlines key TBRF information and facts for health care provider awareness will be published soon in Travis County Medical Society Journal, Campbell said. The researchers are also working to develop prevention recommendations for people who work in caves and tour groups.
“In our investigation, we asked about prevention methods that had been previously used, including long clothing, repellents and permethrin. We found no differences in prevention use between cavers who were seropositive and those who were seronegative for TBRF,” Campbell said. “Because this was a small sample size, further research would be helpful to understand the impacts of prevention measures.” – by Gerard Gallagher
Reference:
Campbell SB, et al. Evaluating the risk of tickborne relapsing fever among occupational cavers — Austin, TX, 2017. Presented at: Epidemic Intelligence Service conference; April 16-19, 2018; Atlanta.
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**Comment**
Nothing about this is rare. Up until now, nobody’s been keeping score. Ticks found in caves is not new: https://madisonarealymesupportgroup.com/2017/10/27/israeli-kids-get-lyme-disease-from-ticks-in-caves/, nor is finding them on rocks or underneath picnic benches and tables: https://madisonarealymesupportgroup.com/2017/03/13/ticks-found-on-rocks/. Birds also spread them wherever they fly: https://madisonarealymesupportgroup.com/2017/08/17/of-birds-and-ticks/ “As they’re migrating, they’re either dropping the ticks off as they fly or when they land. They’re kind of seeding them along migration patterns.”
Looking at Lyme Through a New Lens
Come hear the latest research and treatment news from Dana Parish, Dr. Neil Spector, Dr. Steven Phillips and 25 health fair exhibitors.
Join us for Lyme Connection’s 12th Annual Patient Conference and Health Fair–“Looking at Lyme Through a New Lens” — Thursday, May 17, at Western Connecticut State University’s Westside Campus Student Center. Doors open at 5:00 p.m., giving attendees time to visit the Lyme-focused health fair, featuring tick-control products, Lyme-literate practitioners, diagnostic laboratories, and manufacturers offering prevention and patient support services.
The evening program begins at 7:00 p.m. with the presentation of Lyme Connection’s second Courage in Journalism Award to Lew Leone, vice president and general manager of WNYW-FOX 5 TV. Attendees will then hear from internationally acclaimed speakers: Wilton, Connecticut based internist and tick-borne diseases specialist Dr. Steven Phillips; Duke University Oncologist Dr. Neil Spector (by video); and patient advocate Dana Parish.
Admission is free thanks to the support of this year’s sponsors: Dr. Roseann Capanna-Hodge, Hopkinton Drug, IGeneX, Inc., Nutramedix, SOPHIA Natural Health Center, and Tick Box Technology Corporation.
http://www.contagionlive.com/news/can-infectious-disease-physicians-help-prevent-violence
Can Infectious Disease Physicians Help Prevent Violence?
APR 17, 2018 | ROBERT C BRANSFIELD, MD, DLFAPA
About 1.6 million individuals die from violence each year on a global scale; in fact, more Americans have died from gunshot wounds in the past 50 years than have died from all wars combined since the American Revolution.
Where peace has been shown to correlate strongly with education, health, economic opportunity and a lower prevalence of infectious disease, the world is currently struggling with a long-term epidemic of violence. As new high-velocity bullets increase the severity of trauma seen with gunshot wounds, there is a growing concern that weapon technology may be more advanced than the scientific capacity to understand and prevent the violence they contribute to.
Although violence occurs on a daily basis, it periodically makes media headlines, especially when it comes to mass shootings, which often lead to a worldwide debate focused on 2 major elements: gun control and mental illness. Gun owners strongly defend their right to own guns, while mental health organizations state that the vast majority with mental illnesses are not violent and should not be unfairly stigmatized. However, the formula to explain violence is much more complex than guns and mental illness.
We need to methodically understand all contributors, deterrents, and acute triggers to violence in the same way in which we study airplane crashes and perform hospital quality assurance. Some of the contributors to violence that are well-recognized include the following: homelessness, social isolation, being single, living alone, gang membership, low education, unemployment, incarceration, a history of violent behavior or a fascination with weapons, having had been a victim of violence and/or exposure to violence. Others can include having opposed religious, political, ethnic or lifestyle beliefs; gender or genes (monoamine oxidase A, catechol-O-methyltransferase, serotonin transporter gene, FK506 binding protein s, XYY); and/or grudge holding.
There are also several psychiatric disorders and diagnoses that can make individuals more prone to violence, these can include: child conduct disorder, intermittent explosive disorder, narcissistic personality disorder, antisocial personality disorder, psychopathy, bipolar illness, depression, social communication disorder, among other conditions. Treatment nonadherence, substance abuse, intoxication, toxicity, among others also make the list.
On the other hand, just as there are contributors to violence, there are also deterrents, which are just as important to understand. These deterrents can include empathy, frustration tolerance, restraint capabilities, a higher education, strong coping skills, supportive relationships, social connections, ethical and/or religious beliefs, access to psychiatric and medical care, as well as social structure.
Triggering events can include acute stress, apperception of threat, jealousy, obsession, psychotic delusions, post-traumatic flashbacks, hopelessness, competition, exposure to violence, traumatic brain injury, unintentional injury, being suicidal, self-harm, impairment from substance use, intoxication, and losing a parent.
Notable among these contributors to violence are impairments caused by a number of past and present infections resulting in immune processes associated with certain types of brain dysfunction. There is a long history of infectious diseases associated with and following warfare. Many infections during and after WWI may have resulted in residual neuropsychiatric impairments in those who had been infected; these impairments associated with violence in the general population and leaders could have been one of the many contributors to WWII. It is also possible that current war zones endemic to violence may follow a similar pattern in which there is a repetitive cycle of infection, brain impairments contributory to violence, and resulting violence.
My most recent article; Aggression, Violence, Homicidality, Homicide and Lyme Disease is a follow-up to a prior article on suicide and Lyme and associated diseases in which I found 68% of late-stage Lyme disease patients had some form of aggressiveness and 11% of these patients, as well as 26% of the suicidal Lyme patients, were also homicidal.
In the current article, I first provide a basic background and formula to analyze violence and then apply this formula to a statistical analysis of patients with Lyme disease. When applying this formula to Lyme disease, the impairments caused by Lyme disease contributing to homicidal risk within the 95% confidence interval included suicidality, sudden abrupt mood swings, explosive anger, paranoia, anhedonia, hypervigilance, exaggerated startle, disinhibition, nightmares, depersonalization, intrusive aggressive images, dissociative episodes, de-realization, intrusive sexual images, marital/family problems, legal problems, substance abuse, depression, panic disorder, memory impairments, neuropathy, cranial nerve symptoms, and decreased libido. Most aggression in these patients was associated with poor impulse control, sometimes triggered by intrusive images, thoughts, and emotions; sound or other stimulation and frustration, and the resulting aggression was invariably bizarre and senseless. In a past interview, I spoke with Contagion® about this topic.
Cross-disciplinary bridges need to be built and maintained between psychiatrists, infectious disease physicians, psychoimmunologists, and neuroscientists to better understand and prevent tragedies in order to save lives. We need to keep current with fields outside of our specialty and avoid silo mentality. If physicians do not keep up with advances in psychiatry and are inattentive to cognitive and psychiatric symptoms in their patients with infectious diseases, they are in danger of misclassifying these symptoms as being “subjective, non-specific, medically unexplained symptoms or bodily distress symptoms.” It is also important for infectious disease physicians to recognize the significant limitations of 2 tier testing for Lyme disease, to perform psychiatric screening examinations on their patients with Lyme and other infectious diseases associated with causing psychiatric symptoms, to recognize that the progression of these symptoms may be a clinical indication of persistent infection.
If we are successful at improving research, prevention, diagnosis, and treatment; I hope someday to reach a point where I stop receiving calls from defense attorneys after someone with Lyme or some other infectious disease committed homicide or some other crime. With better communication and collaborations across disciplines, we could work to prevent these things from happening, and ultimately, save lives.
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**Comment**
Unfortunately, many Lyme/MSIDS patients are misdiagnosed with mental illness and are prescribed psychiatric drugs that are causing problems:
Collaboration must happen. People are falling through the cracks: https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/
https://www.lymedisease.org/touched-by-lyme-ngc-shut-down/ APR 2018
TOUCHED BY LYME: Guidelines clearinghouse to shut down in July
by Dorothy Kupcha Leland
The Agency for Healthcare Research and Quality (AHRQ) is a small, little-known part of the US Department of Health and Human Services (HHS).
One of the functions that AHRQ has performed up until now is to provide the National Guidelines Clearinghouse (NGC).
NGC is a database of clinical guidelines for a wide variety of diseases. Its purpose is to inform physicians on the best way to treat various medical conditions.
Two years ago, the Lyme community was heartened when the NGC removed the IDSA Lyme treatment guidelines (which we view as anti-patient) from its listing and left in place the ILADS Lyme treatment guidelines (which we view as pro-patient).
Alas, now it seems that the landscape is changing.
Last week, the AHRQ posted the following announcement on its website:
The AHRQ National Guideline Clearinghouse (NGC, guideline.gov) Web site will not be available after July 16, 2018 because federal funding through AHRQ will no longer be available to support the NGC as of that date. AHRQ is receiving expressions of interest from stakeholders interested in carrying on NGC’s work. It is not clear at this time, however, when or if NGC (or something like NGC) will be online again. In addition, AHRQ has not yet determined whether, or to what extent, the Agency would have an ongoing role if a stakeholder were to continue to operate the NGC. We will continue to post summaries of new and updated evidence-based clinical practice guidelines until July 2, 2018. For any questions, please contact Mary.Nix@ahrq.hhs.gov.
Say what? AHRQ “is receiving expressions of interest from stakeholders interested in carrying on NGC’s work”? Um, and who might those “stakeholders” be?
Right off the top of my head, I’d say the IDSA holds a pretty big stake in the outcome of this decision. We sure wouldn’t want that fox guarding the henhouse.
Stay tuned. It may be a wild ride.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .
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For more: https://madisonarealymesupportgroup.com/2016/02/12/idsa-guidelines-removed-from-ngc/
https://madisonarealymesupportgroup.com/2018/04/08/the-battle-to-fight-lyme-disease-continues/ “It’s very complicated, and for the CDC to set up a bunch of guidelines from incomplete research done in the 1970s and ’80s is very frustrating,” said Ahern, a 1977 Scotia-Glenville High School graduate who has spent the last 20 years as a professor of microbiology at SUNY-Adirondack in Queensbury. “We need to change our approach to everything about Lyme disease, but there are an important group of individuals who are still in power that refuse to believe they were half wrong and will not yield the stage. We need more research. We need better testing.”
https://madisonarealymesupportgroup.com/2017/06/29/british-lord-says-cdcidsa-lyme-guidelines-not-fit-for-purpose/ “Outdated guidelines, unreliable blood tests, insufficient training for doctors, a lack of tick-borne specialists of calibre and a widespread lack of awareness among the general public of preventive measures are all factors that are leaving us alarmingly ill-equipped to tackle a problem that poses a rapidly increasing risk to every UK citizen.”
