Archive for the ‘Activism’ Category

Teen Lyme – Lyme Hangout With Dr. Cameron

HOST: Dr. Daniel Cameron

DATE: Tuesday, April 24, 2018

TIME: 8 PM EST

FEATURED TOPIC: Teen Lyme
Share your thoughts, ask questions or just listen in and hangout!  There will be discussion with a 16-year old boy with Lyme Disease.

Register here:  http://danielcameronmd.com/lyme-hangout-teen-adolescent-lyme-disease/.  You can can also post questions at the link.
http://danielcameronmd.com/lyme-hangout-teen-adolescent-lyme-disease/?mgi_107=8376/teens-and-lyme-disease

TEENS AND LYME DISEASE

Chapter 68: Lyme disease initially diagnosed as juvenile rheumatoid arthritis

Lyme disease was first identified in 1975 in a group of children and adolescents living in Lyme, Connecticut who suffered from recurrent attacks of asymmetric swelling and pain in the knee. The patients were initially diagnosed with juvenile rheumatoid arthritis.

“The typical patient has had three recurrences, but 16 patients have had none,” noted lead investigator Steere, then a postdoctoral fellow in rheumatology at Yale University.1 “During remission, some patients remembered short periods of joint pain, sometimes lasting only hours, without swelling (and therefore, not included as attacks).”

Pain also occurred in the ankle, wrist, temporomandibular joint, shoulder, hip, and elbow. Other symptoms included malaise, fatigue, headaches, myalgia, periorbital edema, and swelling of the hands or feet. Of the 12 subjects, seven suffered from “profound fatigue and hyperesthesia, sometimes persisting for months after the arthritis had gone,” say Steere and colleagues. 1

A team of researchers including Steere would, 14 years later, report in the New England Journal of Medicine that chronic neurologic Lyme disease was one of the complications of Lyme disease. 2

Chapter 125: In need of a better understanding of Lyme disease in children

Steere and colleagues describe an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities. “Attacks were usually short (median 1 week) with much longer intervening periods of complete remission (median 2.5 months), but some attacks lasted for months. To date, the typical patient has had three recurrences, but 16 [of 51] patients had none,” say the authors, adding, “Over half had concomitant fever (100° – 103°F), malaise and fatigue, headache, and myalgia.” 1

Only a handful of studies on children and adolescents with tick-borne diseases have been done, despite the prevalence of the diseases in this age group and the potential for long-term health consequences.

Bloom and colleagues from Tufts University School of Medicine in 1998 describe the complications of Lyme disease in children. “Five children [of 86] developed behavioral changes, forgetfulness, declining school performance, headache or fatigue and, in two cases, a partial complex seizure disorder.”3

Vázquez and colleagues from the Department of Pediatrics and the Yale Children’s Clinical Research Center report children ages 2 to 18 with prior cranial nerve palsy have significantly more behavioral changes (16 percent vs. 2 percent), arthralgias and myalgias (21 percent vs. 5 percent), and memory problems (8 percent vs. 1 percent) an average of four years after treatment for Lyme disease.4

Chapter 127: Case study: 16-year-old with Lyme disease presenting as depression

In a second case reported in 1998 by Fallon and colleagues, a 16-year-old boy, named David, was initially presumed to suffer from long-standing depression. He presented with anger, frustration, insomnia, poor appetite, mild weight loss, and passive suicidal ideation. His longstanding depression was “exacerbated recently when he stopped dating a girl after only two weeks because he felt too tired and not smart enough,” according to the researchers. 5 “He reported feeling spaced out all the time, as if in a fog.” David also lived in a Lyme endemic area.

David’s steep decline in cognitive behavior and IQ were initially presumed to be caused by “either laziness or mild depression.”

  • He quit sports.
  • His grades declined from A and A- in seventh grade to nearly failing by tenth grade.
  • He appeared lazy because he found it hard to get out of bed in the morning.
  • He often forgot to hand in assignments that he had in fact completed.
  • He reported trouble staying awake in class and trouble concentrating.

His symptoms were extensive:

  • severe headaches
  • facial fasciculations (muscle twitches), myalgias
  • stiff neck
  • hyperacusis (sensitivity to sounds)
  • episodic paresthesias (burning or prickling sensation) of his face and hands
  • sudden sweating
  • painful joints
  • sore throats
  • palpitations
  • electric-shock-like pains
  • word-finding problems such that it was hard to finish sentences
  • semantic paraphasias
  • short-term memory problems such that he could not recall conversations
  • testicular pain

While the young man had “had embedded tick bites,” wrote the researchers, “he could not recall ever having had an erythema migrans rash.”

David’s “Lyme ELISA was negative twice in the prior 3 months, his IgG Western blot revealed 4 of the 5 requisite CDC specific bands.” The neuropsychologic evaluation, said the researchers, showed “significant deficits in processing speed and visual spatial memory.” Researchers added, testing by a brain SPECT “revealed moderate to severe diffusely and heterogeneously decreased perfusion in the cortex and the central white matter, consistent with encephalitis, vasculitis, and Lyme disease.”

David was diagnosed and treated with excellent results for probable Lyme encephalopathy with 12 weeks of intravenous ceftriaxone. He improved on sleep, appetite, headaches, joint pains, numbness, distractibility, short-term memory, and emotional behavior. His depression cleared without the need for antidepressant medications. His IQ improved by 22 points, and his school performance markedly improved.

Like the case of 7-year-old Susan, David’s case also illustrates the need for careful diagnosis and treatment of tick-borne infections in young people. So often these infections look like the common problems see in school-aged children: depression, ADHD, joint pains from growth spurts. These cases show the need to not only look at symptoms, but to be mindful of where students live and play.

Text from Dr. Daniel Cameron’s Book: Lyme Disease takes on Medicine.

  1. Steere AC, Malawista SE, Snydman DR, et al. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three connecticut communities. Arthritis Rheum. 1977;20(1):7-17.
  2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  3. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Pediatr Infect Dis J. 1998;17(3):189-196.
  4. Vazquez M, Sparrow SS, Shapiro ED. Long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease. Pediatrics. 2003;112(2):e93-97.
  5. Fallon BA, Kochevar JM, Gaito A, Nields JA. The underdiagnosis of neuropsychiatric Lyme disease in children and adults. Psychiatr Clin North Am. 1998;21(3):693-703, viii.

 

 

Franklin Replaces Haller on TBD Working Group

https://www.lymedisease.org/membership-change-tbd-working-group-subcommittee/

April, 2018

Membership change on TBD Working Group subcommittee

Sherill Franklin, a small business owner and patient advocate from Pennsylvania, will join the Access to Care Services and Support to Patients Subcommittee of the Tick-Borne Disease Working Group. She will replace Dr. Enid Haller, who is departing.

The announcement was made on the website of the US Department of Health and Human Services, which stated, “Franklin has written extensively about her own 30-year experience with Lyme disease and has advocated for better diagnostic tools and definitive treatments for tick-borne disease.”

In 2015, Franklin wrote a guest blog for LymeDisease.org about why she joined the MyLymeData project. Read it here:  https://www.lymedisease.org/mylymedata-franklin/  Taking power over a disease that has brought us to our knees

In 2017, she wrote another guest blog for us as well:  https://www.lymedisease.org/sherrill-franklin/  Here are my top priorities for Lyme disease research

The next meeting of the Tick-Borne Disease Working Group will be May 10, from 8:30 a.m. to 6:30 p.m., Eastern Time.

The Working Group will focus on the findings and basis for the draft reports from the work of the six Subcommittee Working Groups that were established on December 12, 2017. These subcommittees were established to assist the Working Group with the development of the report to Congress and the HHS Secretary as required by the 21st Century Cures Act.

This will be an online meeting. Members of the public may attend the meeting via webcast. Instructions for attending this virtual meeting will be posted one week prior to the meeting at: https://www.hhs.gov/​ash/​advisory-committees/​tickbornedisease/​index.html.

Click here for more information about the Working Group:  https://www.hhs.gov/ash/advisory-committees/tickbornedisease/index.html

 

Free Patient Conference & Health Fair – Connecticut

Looking at Lyme Through a New Lens

Dana, Steve, Neil

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.

May 17 Patient Event Flyer

https://lymeconnection.org/

Can Infectious Disease Physicians Help Prevent Violence?

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
Robert 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.

 _______________
**Comment**
Unfortunately, many Lyme/MSIDS patients are misdiagnosed with mental illness and are prescribed psychiatric drugs that are causing problems:

National Guidelines Clearinghouse to Shut Down in July but Receiving Stakeholder Interest to Carry on

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

NGC-best-300x231-300x231

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/

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https://madisonarealymesupportgroup.com/2017/12/02/still-a-pig-with-lipstick-cdc-removes-link-to-idsa-guidelines/

https://madisonarealymesupportgroup.com/2017/08/19/dr-liegner-guidelines-used-by-managed-care-causing-lyme-deaths/

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.”