The 2018 Report 'The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients was submitted to Special Rapporteur Michel Forst and to Special Rapporteur Dr. Dainius Pūras of the United Nations in March 2018. This resulted in a meeting between United Nations Human Rights Council Special Rapporteur Forst and medical professionals, scientists, human rights experts and advocates on June 5, 2018 in Geneva, Switzerland.
Chronic Lyme is officially not supposed to exist. People with persistent severe health issues are simply supposed to fake it, to chronically want attention or to suffer from a undiagnosed type of hysteria. Or they are told they have a 'post-treatment' syndrome; often without having had treatment. If children remain ill after a Lyme infection and a short treatment, their parents are accused of poisoning them. Their treating physicians will be publicly slandered as 'quacks'. But what if the wrong story is being told? A story in which millions of people can simply disappear? The current story about Lyme - called the 'latest fashion disease for young women' by some - is a story compiled of misconceptions, of oversimplification and of gender and confirmation bias. This article shows that from a social perspective, this leads to an institutional 'gang rape'. Written as an inspiration to start telling a better story in 2018, by On Lyme's founder Huib Kraaijeveld.
Recently, a group of Lyme disease patients in the United States filed a lawsuit against several major health insurance companies and a group of Lyme disease specialists seeking treble damages for RICO Act (Racketeer Influenced and Corrupt Organizations Act) and Sherman Act antitrust violations. Four months earlier, Dr. Sin Hang Lee also initiated a legal action against the CDC for anti-competitive campaign to stifle the use and availability of his DNA-based direct test to diagnose Lyme disease. More recently, court materials surfaced which show credible reasons to believe that the role of Yale University in suppressing development and use of direct detection methods in the diagnosis of Lyme disease at the early stage of infection for patient care should also be scrutinized by the media and the lawyers of the RICO suit.
Around 2003 the WHO encouraged research into microscopy as a direct test for the Borrelia spirochete, the pathogen causing Lyme disease. When a promising new and simple technique was discovered in 2013, it was however violently attacked. Not on the science itself, which is the normal procedure in science, but personally. Now retired professor microbiology Morten Laane was fired after he gave a lecture at a scientific conference in 2014. Moreover, his laboratory was closed down, the website of the scientific journal was hacked and the article disappeared. An exclusive interview.
Holly Ahern is a professor of microbiology as well as the mother of a child that was severely affected by Lyme Disease. Because of this personal experience and her professional background and training, she was able to dissect the flaws in scientific reasoning that underlie decades of wrong policies, invalid diagnostics and treatment that fail too many. An interview with a mother who went deep into the (anti)scientific Rabbit Hole of the Lyme science.
The second part of the interview with Dr Jack Lambert, a Scottish doctor who is currently working as an Infectious Diseases consultant in a public hospital in Dublin, Ireland. He has been treating Lyme Borreliosis patients for 20 years in the USA and during the last 5 years in Ireland. He has also successfully treated young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection. Dr. Lambert shares his experience with different emerging serious conditions caused by complex infections and looks at similarities or differences of how they are regarded and treated. Read part one here: "We don’t have perfect tests for diagnosis of Lyme".
Dr. Jack Lambert is a Scottish doctor who is currently working as an Infectious Diseases consultant in a public hospital in Dublin, Ireland. He has started treating Lyme Borreliosis patients 20 years ago in the USA and during the last 5 years in Ireland. He has also successfully treated a number of young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection to reactivate. In this exclusive interview in two parts, Dr. Lambert shares his experience with different emerging serious conditions caused by complex infections and looks at similarities and differences as to how they present clinically and are treated.
"It is all in your head". An assessment that is all too familiar to many patients with little understood emergent diseases such as ME, PANS or Lyme. Together with the rise of complex chronic illnesses caused by stealth pathogens, we witness a rise of the invention of so-called ‘somatic disorders’. This is of concern to both patients, who are often declared to be suffering from psychiatric illnesses without a proper evaluation of potential biological causes of their symptoms, as well as to their treating physicians. An interview with psychiatrist Robert Bransfield to provide a better understanding of the brain and body interaction and a critical analysis of the real function of these new somatic syndromes.
After the broadcast of the documentary 'Undercover in the German Lyme clinics' on Dutch TV, many patients and their families were left with questions or concerns. As the Danish reporters of the original documentary called 'Snyd eller Borrelia' did not allow for the other side of the story, we collected these questions and asked the Medical Director of one of the German clinics that was attacked to address them. An interview with Dr. Carsten Nicolaus, founder and head of the BCA clinic in Augsburg.
The first part of the article about the careless way Youth Care organization ‘Safe Home’ in which conducts itself calls into question if they contribute to social cohesion and safety in this way. Why can a Confidence doctor with confirmation bias do a PhD? Why does this organization train other professionals to suspect child abuse in a long list of illnesses and to paint nearly all Dutch parents black?
On September 6, 2017, a Dutch judge ruled that health insurer IZZ has to pay for longterm Lyme treatment. This is not only good news for this particular patient, but it also creates a legal precedent for others. Both within the Netherlands as possibly also in other countries.
The article 'To test or not to test? Laboratory support for the diagnosis of Lyme borreliosis' by Dessau et al. was published on September 5, 2017. It admits something that chronic Lyme patients have known for decades: the current serological tests are invalid. However, instead of relying upon clinical diagnosis because of these poor quality tests, or using many of the more sensitive testing options that are available, the 15 authors rush to draw an odd conclusion: “Let’s limit the use of the very inaccurate tests only to those people who show the few symptoms found under the surveillance case definition for Lyme borreliosis."
This extensive list of peer-reviewed references demonstrating the association between Lyme Borreliosis, co-infections and psychiatric symptoms was provided by Robert C Bransfield, MD, DLFAPA, to the New York Senate after the recent hearing on Lyme Disease. As both patients and doctors are struggling with the confusion about the psychiatric expression of Lyme Borreliosis and with the reversal of the causal effect ("is the mental state the cause of the disease or rather a symptom?"), we included this list for you. It may be helpful, for example in dealing with accusations of Child Protective Services.
Psychiatrist Robert Bransfield, MD addressed last week’s New York State Senate hearing on Lyme disease via remote video link. His testimony was a clear summary of all that is wrong with the current situation and indicates several political remedies. As a psychiatrist, he focused on the many psychiatric impairments that can arise from tick-borne illnesses and on both the current as well as the preferred role of his profession. If you’ve tried watching the hearing, you will have noticed that there were audio problems with Dr. Bransfield’s presentation. Here is the transcript of his testimony.
In 2016, international human rights expert Jenna Luché-Thayer and founder of the Global Response to Borreliosis and Coinfections Consortium (Global RBCC) responded to a cry for help from Jane Furer, an NBCLA producer who is living with chronic Lyme.
In the USA an unprecedented anti-trust law suit of $57 million is being prepared against the CDC. They are accused of deliberately suppressing the use of an accurate DNA direct diagnostics for Lyme disease. You can read about the aim and potential impact of this lawsuit in this article.