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.

16 nov

Seroprevalence of Borrelia burgdorferi, Anaplasma phagocytophilum, and Francisella tularensis Infections in Belgium: Results of Three Population-Based Samples

Seroprevalence of Borrelia burgdorferi, Anaplasma phagocytophilum, and Francisella tularensis Infections in Belgium: Results of Three Population-Based Samples.

De Keukeleire M1,2, Vanwambeke SO1, Cochez C3, Heyman P3, Fretin D4, Deneys V5, Luyasu V2, Kabamba B6, Robert A2.

“The seroprevalence of Bb was 5.4% in workers professionally exposed, 2.9% in rural blood donors, and 2.6% in urban blood donors.”

LBBP: Het gaat hier over België! Als test werd de ELISA-test gebruikt, die een ac300px-adhesioncuraatheid heeft van ergens tussen de 40% en 60%, dus waarschijnlijk ligt het aantal positieve gevallen een heel stuk hoger dan die 3%. Er is dringend nood aan meer accurate testen, om een juist beeld te krijgen van het aantal effectieve besmettingen. En zolang er geen 100% betrouwbare testen zijn, blijft een klinische diagnose, vaak onbestaande bij artsen, bijzonder noodzakelijk.

Abstract

To estimate the seroprevalence of Borrelia burgdorferi (Bb), Anaplasma phagocytophilum (Ap), and Francisella tularensis (Ft) in Belgium, we tested sera from three population-based samples in which exposure to pathogen is assumed to vary: 148 samples from workers professionally exposed, 209 samples from rural blood donors, and 193 samples from urban blood donors. Sera were tested using ELISA or the immunofluorescence assay test. The seroprevalence of Bb was 5.4% in workers professionally exposed, 2.9% in rural blood donors, and 2.6% in urban blood donors, which is similar to other studies. The fraction of negative results decreases significantly from urban blood donors and rural blood donors to workers. Regarding the seroprevalence of Ap, the cutoff titer of 1:64 recommended by the manufacturer may be set too low and produces artificially high seroprevalence rates. Using a cutoff titer of 1:128, the seroprevalence of Ap was estimated at 8.1% for workers professionally exposed, 6.2% for rural blood donors, and 5.7% for urban blood donors. Tularemia sera confirmed the presence of the pathogen in Belgium at 2.0% for workers and 0.5% for rural and urban blood donors. Our study is one of the few providing an estimation of the seroprevalences of Bb, Ap, and Ft in three different populations in Belgium, filling the gap in seroprevalence data among those groups. Our findings provide evidence that the entire Belgian population is exposed to Bb, Ap, and Ft infections, but a higher exposure is noticed for professionals at risk. Education on the risk factors for tick bites and preventive measures for both professionals exposed and the general population is needed.

 

11 nov

Ierse documentaire (11 okt 2016)

irish-clover-lyme-disease-uk

A must-watch film….thanks for this ….this is worldwide and government denied…then denied by the medical boards..then by the very people that are supposed to care for you
– Richard Brooke-Powell

James Pembroke created the compelling documentary ‘Living with Lyme Disease’ featuring sufferers in Ireland as well as doctors speaking out about some very important issues encompassing the illness. The documentary was aired on Irish TV on 11th October 2016. Well done to all involved and James has kindly made the film available on Youtube to watch.

‘Living with Lyme Disease’

This documentary is the compelling story of people affected by Lyme disease in Ireland. Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by bacteria of the Borrelia type. Lyme disease is a bacterial infection typically transmitted through the bite of an infected tick.