11 sep

Dr. Neil Spector Speaks at Focus on Lyme 2017

Top Lyme Awareness door Dr. Neil Spector, top kankerspecialist in US, en Lyme ervaringsdeskundige. Hij moest een harttransplantatie ondergaan door Lyme Disease. De diagnose bleef lang uit, en hij werd lang niet geloofd door zijn collega’s, zoals het voor de meeste patiënten het geval is. Hier spreekt hij over wat er kan gedaan worden voor Lyme Disease Awareness en het onderzoek ernaar, wat in tegenstelling tot kankeronderzoek, totnutoe summier is.

Dr. Neil Spector Speaks at Focus on Lyme 2017

Dr. Neil Spector-one of the top cancer researchers in the US-suffered from misdiagnosed Lyme disease for many years. Although he was eventually diagnosed and treated for Lyme, by then his heart was so damaged, he needed a heart transplant. He chronicled the experience in his memoir, Gone in A Heartbeat: A Physician’s Search for True Healing.

05 sep

Empirical validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for suspected Lyme disease

Empirical validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for suspected Lyme disease

The results consistently demonstrated that the HMQ accurately differentiated those with Lyme disease from healthy individuals. Three migratory pain survey items (persistent muscular pain, arthritic pain, and nerve pain/paresthesias) robustly identified individuals with verified Lyme disease. The results support the use of the HMQ as a valid, efficient, and low-cost screening tool for medical practitioners to decide if additional testing is warranted to distinguish between Lyme disease and other illnesses.

 

Empirical validation of the Horowitz Multiple Systemic Infectious Dise | IJGM

Empirical validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for suspected Lyme disease Maryalice Citera,1 Phyllis R Freeman,2 Richard I Horowitz2 1Department of Psychology, State University of New York at New Paltz, New Paltz, NY, 2Hudson Valley Healing Arts Center, Hyde Park, NY, USA Purpose: Lyme disease is spreading worldwide, with multiple Borrelia species causing a broad range of clinical symptoms that mimic other illnesses.

 

HMQ for Lyme disease – Video Abstract ID 140224

Video abstract of original research paper “Empirical validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for suspected Lyme disease” published in the open access journal International Journal of General Medicine by authors Citera M, Freeman PR, Horowitz RI.

 

12 aug

European Centre For Disease Prevention and Control (ECDC) erkend lyme als ernstige bedreigende infectieziekte

Een document waar Lyme Disease/Borreliosis, tularemie, tekenencefalitis (alle tekenbeetziekten) door het europese center for disease prevention and control worden erkend als ernstige bedreigende infectieziektes. Late Lyme wordt als dusdanig nog niet vermeld, maar dat moet ooit volgen.

Link

Diseases were selected according to the definition of ‘serious cross-border threat to health’ from Decision 1082/2013/EU on serious cross-border threats to health: ‘life-threatening or otherwise serious hazard to health of biological […] origin which spreads or entails a significant risk of spreading across the national borders of Member States, and which may necessitate coordination at Union level in order to ensure a high level of human health protection’.(p19)

29 jun

Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation

Een rapport aan WHO dat gaat over schending van mensenrechten bij mensen die leven met Lyme Disease en Relapsing Fever, resulteerde in een meeting met UN human rights watch afgevaardigde, medici, wetenschappers, advocaten om de situatie te onderzoeken. Dit is pas het begin van de acties. Overal ter wereld waar dit gebeurt, zal gerapporeerd worden. Dat is alweer een grote stap vooruit! Lees hieronder verder. Nuttig artikel om te bewaren!

”Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation
A report submitted to World Health Organization resulted in a meeting between a United Nations Human Rights Council Special Rapporteur and medical professionals, scientists, human rights experts and advocates on June 7, in Geneva, Switzerland. This meeting focused on the violations against persons living with borreliosis infections, such as relapsing fever and Lyme disease.
According to Ad Hoc Committee and Global RBCC founder Luché-Thayer, this is just the beginning of their actions. “We will report any government agency, medical board, medical society or health insurance company that interferes with these human rights, said Luché-Thayer. “We are stakeholders with a global reach and an international presence and the Special Rapporteur has the mandate to investigate all these abuses.”

Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation

FOR IMMEDIATE RELEASE June 27, 2017 Contact author: Jenna Luché-Thayer EMAIL: jennaluche@gmail.com Human Rights Violations of Relapsing Fever and

 

05 jun

Maladie de Lyme : épidémie ou psychose? – Enquête de santé le documentaire

Le documentaire “Tiques, la grande traque” de Stéphanie Rathscheck, diffusé le mardi 30 mai 2017 dans l’émission “Enquête de Santé” sur France 5.

Maladie de Lyme : épidémie ou psychose ? – Enquête de santé le documentaire

Tout commence par une promenade en forêt. Cachée dans les herbes, la tique guette sa proie. La proie, c’est vous ! En mordant, le parasite peut transmettre une redoutable bactérie, Borrelia burgdorferi, responsable de la maladie de Lyme. Le début du cauchemar pour des milliers de malades infectés sans le savoir.

Maladie de Lyme : épidémie ou psychose ? – Enquête de santé le débat

Tout commence par une promenade en forêt. Cachée dans les herbes, la tique guette sa proie. La proie, c’est vous ! En mordant, le parasite peut transmettre une redoutable bactérie, Borrelia burgdorferi, responsable de la maladie de Lyme. Le début du cauchemar pour des milliers de malades infectés sans le savoir.

 

08 apr

De week van de teek – info over teken & tekenbeten

Benieuwd wat je kan doen om een tekenbeet te voorkomen en wat je (NIET!) moet doen om zo’n vies monstertje te verwijderen ?
Check dan deze informatieve video (mèt vermelding van chronische lyme!) :

De week van de teek

Kijk de hele aflevering op: http://www.rtlxl.nl/#!/gemist/rtl-weer-215961 RTLZ Weer Opmerkelijk 3 april 2017 Website : http://www.rtlxl.nl Facebook : https://www.facebook.com/RTLXL Twitter : https://twitter.com/rtlxl Nieuwsbrief : http://www.rtl.nl/service/xl/nieuwsbrief/

 

05 mrt

“Lyme and Reason” nominated for 3 Emmy awards

New York television station Fox5NY, has been nominated for three Emmy awards related to its groundbreaking program “Lyme & Reason: The Cause & Consequence of Lyme Disease,” which first aired on June 30, 2016.

FOX 5 Special: LYME & REASON

“LYME AND REASON: THE CAUSE AND CONSEQUENCE OF LYME DISEASE” presents an in-depth look at the cause and effect of Lyme disease, including the controversy over testing, the issues of misdiagnosis, and the personal struggles of medical professionals and patients contending with this life-changing illness. -Brian A.

The first nomination is for the entire 22-minute special report, which discusses the causes and effects of Lyme disease, controversies over testing and misdiagnosis, and the personal struggles of patients and medical professionals.

The second nomination is for one segment of that program, “Gone in a Heartbeat.” It features Dr. Neil Specter, whose undiagnosed Lyme disease damaged his heart so much that he needed a transplant.

The third nomination is in the category of “Interactivity.” After the original story aired, Fox5NY extended its impact in ways that reverberated for a long time, across the country and around the world.

The station posted the program itself on YouTube, so that it is available to anyone. Then it took the unusual step of posting many of the original interviews in their entirety. That’s almost three hours of additional material.

Furthermore, the station entered into a long dialogue with viewers via Facebook and email, receiving more than 3,000 messages about the program in just the first few days after it aired.

Fox5NY even allowed Dr. Steven Phillips to respond on its Facebook page to statements made on the program by the CDC that the ILADS physician thought were misleading. (The station offered the same opportunity to the CDC, who didn’t take them up on it.)

Joe Silvestri, producer of the special, said the Emmy nominations have been gratifying. “Recognition such as this is an honor since it also serves as a way to raise much needed awareness about a very important issue.”

(Note: Fox5NY did a second special report about Lyme disease that aired in November, 2016, called “Lyme and Reason 2.0: The Voices of Change.” Because of the timing of the award application process, it will be eligible to be nominated next year.)

LYME & REASON 2.0: LYME DISEASE & THE VOICES OF CHANGE

A follow-up to the groundbreaking LYME & REASON: THE CAUSE & CONSEQUENCE OF LYME DISEASE, “The Voices of Change” focuses on the use of social media as a tool to inform and open the door to change on the Lyme disease front, and how patients, advocates, physicians and others are moving the conversation forward.

08 jan

The Norwegian footballer Eivind Markhus died

One of the bravest truest Lyme warriors has died – the Norwegian footballer Eivind Markhus.

He suffered the worst effects of Lyme, with Motor Neurone Disease
He was hoping to begin new treatment soon, and had fought for us all by spending so much of his time and a great deal of his own money in the Norwegian courts, trying to get Lyme recognised as a persistent infection.

This message from his children:

Our beloved, beautiful, kind, brave father and husband… At 4.30 this night you drew your last breath. You have had a tough journey through these 16 years and you are a hero and role model in our eyes. You have been so strong both physically and psychologically, for so long, that it is an unreal nightmare that this could happen to you. ”I’ll win” you wrote. In our eyes you won the struggle to free yourself from the wheelchair. Now you are in heaven. We love you with all our hearts Daddy. Life will not ever be the same without you. We miss you so incredibly much. Rest in peace

Lyme Disease, What is going on? (002)

This video clip was put together to demonstrate to Norwegian broadcasters what problem Lyme Disease is and how it can affect your life if not treated. For more information about our project, please go to www.lymefilm.com

18 nov

Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients

Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients.

This hypothesis suggests that physicians should consider the limitations of the evidence before denying antibiotic treatment for CLD. Physicians who deny antibiotic treatment to CLD patients might inform their patients that there are some clinicians who disagree with that position, and then offer to refer them for a second opinion to a doctor who could potentially present a different point of view. The hypothesis also suggests that health care insurers should consider the limitations of the evidence before adopting policies that routinely deny antibiotic treatment for CLD patients and should expand coverage of CLD to include clinical discretion for specific clinical situations.

Cameron DJ1.

Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients. – PubMed – NCBI

Med Hypotheses. 2009 Jun;72(6):688-91. doi: 10.1016/j.mehy.2009.01.017. Epub 2009 Mar 5.

Abstract

BACKGROUND:

The severity, length of illness, and cost of chronic Lyme disease (CLD) have been well described. A number of oral, intravenous, and intramuscular antibiotics have been prescribed for CLD. Surprisingly few antibiotic schedules prescribed for the treatment of CLD have been evaluated in randomized double-blind placebo-controlled clinical trials (RCTs). Physicians have increasingly turned to clinical treatment guideline (CPG) panels to judge the mixed results of the evidence. Two CPG panels have looked at the evidence only to reach opposite conclusions: (1) antibiotic therapy for CLD is not effective and (2) antibiotic therapy for CLD is effective. Physicians have been advised by guideline developers to use clinical discretion in diagnosing and treating CLD. Nevertheless, many health insurers – relying exclusively upon only one CPG – have a policy of automatically denying antibiotics to CLD patients regardless of the specifics of each case or the recommendations of the patient’s physician.

HYPOTHESES:

This paper examined the eight limitations of the evidence used to conclude that antibiotics therapy for CLD is not effective in forming the following hypothesis: insufficient evidence to deny antibiotic treatment to CLD patients.

EVIDENCE FOR THE HYPOTHESIS:

There are eight limitations that support the hypothesis: (1) the power of the evidence is inadequate to draw definite conclusions, (2) the evidence is too heterogeneous to make strong recommendations, (3) the risk to an individual of facing a long-term debilitating illness has not been considered, (4) the risk to society of a growing chronically ill population has not been considered, (5) treatment delay has not been considered as a confounder, (6) co-infections have not been considered as a confounder, (7) the design of RCTs did not address the range of treatment options in an actual practice, and (8) the findings cannot be generalized to actual practice.

IMPLICATIONS OF THE HYPOTHESES:

This hypothesis suggests that physicians should consider the limitations of the evidence before denying antibiotic treatment for CLD. Physicians who deny antibiotic treatment to CLD patients might inform their patients that there are some clinicians who disagree with that position, and then offer to refer them for a second opinion to a doctor who could potentially present a different point of view. The hypothesis also suggests that health care insurers should consider the limitations of the evidence before adopting policies that routinely deny antibiotic treatment for CLD patients and should expand coverage of CLD to include clinical discretion for specific clinical situations.