Tuesday, 13 February 2018 12:22

Time for a better story

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.

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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.

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Professor Christian Perronne is one of the most prominent medical scientists in Europe, who takes the Lyme epidemic seriously and has helped many French Lyme patients in his hospital near Paris. His personal history gives an insight in how awareness of this disease has evolved in Europe. Here you can read his story, written exclusively for the On Lyme interview series with doctors and scientists.
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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.

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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.

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Tuesday, 15 August 2017 16:38

The ultimate Lyme test; Julia’s story

Two years ago the story of the young ill girl who was blessed by the Pope got international attention. She was dropped on a concrete floor as ’treatment', test results were hidden and the family was repeatedly told that she could NOT have Lyme Disease in the New York area. After the blessing indeed miracles started to happen: her Lyme blood test suddenly showed up positive, a specialist offered her free treatment and her health improved.

Then the insurance company declined coverage of her treatment costs and gave a fake address to file a complaint. To make matters even more bizarre, the CDC called to warn her father to not continue with her Lyme treatments. The story about the CDC, the games the insurance company played and the abuse with regard to the hospitals and doctors was never told before - out of fear of retaliation. As the proof of the pudding is always in the eating, we asked her father Enrico how Julia is doing now. 

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Dr. Kenneth Liegner has been on the forefront of the Lyme Wars for thirty years. In this interview he is asked about his extensive experience in the field of Lyme treatment and how the rise of 'managed care' has influenced choices of treatment options. 

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Dr. Kim Lewis is specialised in persister cells and was mentioned by dr. Horowitz for his current ground breaking research. Could persister cells finally be the explanation why many Lyme symptoms remain after treatment? Dr. Lewis is professor in Microbiology at NorthEastern University in Boston. An exclusive interview about the significance of his work for chronic Lyme patients. 

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The following is largely excerpted from the June 27, 2017 article Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation, by Jenna Luche-Thayer. The link can be found below.

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The BVIKZ, the Interest Group for Intensive Child Care, is doing an ongoing investigation into false claims of child neglect and abuse by the Dutch Child Protection Services. It has now compiled and researched 168 individual cases. Over thirty percent of these cases are about children with Lyme disease. 

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