“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”.This has resulted in needless suffering of many individuals, who deteriorate or even sometimes decease by the lack of timely treatment or by withholding treatments after an arbitrary period of time.” Kenneth Liegner, MD
The discussion about Lyme seems to be medical-scientific. Every week I see ‘newcomers’ in Lyme Land, people who recently got infected and who are shocked by how their GP sends them away without any test or sufficient amount of preventive treatment, being bewildered and trying to make sense of what happens to them.
But what if it’s not about logical thinking or science at all, as Dr. Liegner stated? What if this disease, which is named as the fastest growing infectious disease in the USA, is hijacked for the sake of monetizing it? If so, what does that mean for you or your ill loved ones?
As a European doctor recently said: “The only ones that truly have a right to be angry, are the patients who have been wrongly diagnosed and do not get the appropriate treatment in a timely fashion”. Anger is what psychologists deem to be the second stage on the way to recovery, as it’s the energy you’ll need to get out of apathy. Apathy is sometimes also called being ‘patient’.
Yet how can you become angry in a focused and potentially effective way? What language can be used to move beyond the medical-scientific (endless and pointless) discussion; a discussion that has not fundamentally changed since the 1970’s?
Learning any new language takes time and some effort. But can be worthwhile.
A standing ovation
In Boston, at the 18th annual ILADS conference on tick-borne diseases, Jenna Luché-Thayer received an award for her work with the Ad Hoc Committee. We had worked on her presentation together and it was amazing how it came alive - including the jokes we put into it, to the horror of her husband.
“Nobody ever gets a standing ovation at such a conference!”, my fellow Dutchman Fred said in amazement. Jenna did. A 1000 doctors, nurses, activists and scientists were on their feet, clapping loudly, at the end of her presentation.
We are still resolving how to make the recording of that lecture public. However, a week later I was in London, as a participant to the AONM conference and was given the opportunity to get on stage and improvise a shortened version of Jenna’s speech. Which was filmed.
(courtesy of AONM)
It was an honour to be part of this day with this amazing group of scientists and doctors, who are brave enough to really shift the paradigm of Lyme and related diseases! Dr. Mikovits, professor Hooper, Dr. Klinghardt, Dr. Schwarzbach, Dr. Jemsek and emeritus professor Nicolson.
Human rights language
The same effect occurred in London as in Boston: people’s eyes started to shine, no matter how miserable they felt, how angry they were because of the research fraud going on or how much money that had lost in court cases defending their licenses.
The fact that the long list of human rights violations is now on record with the United Nations opens up a new way to address what is going on. Both patients and their doctors can start using this language now.
Some people, like the Texas lawyer I had diner with in Boston, caught on very quickly. What I liked about him is that he knew nothing about Lyme at all a year ago, when he was approached by the 27 patients who are now plaintiffs in the RICO case against the IDSA doctors and insurance companies.
He took a year studying all materials with an open mind and concluded that the debate isn’t scientific at all, but basically a scam of sheer unbelievable proportions. Several individual IDSA doctors and a number of insurers are now being sued for racketeering and anti-trust violation, as you can read in these legal charges.
The borders of imagination
Last week I was invited for an interview on local radio (in Dutch), hosted by an empathic and intelligent interviewer called Esther. She personally knows several people with chronic Lyme. It was the follow-up on an earlier program in 2016. Esther told me it had taken her a year to recover from the experience, while I thought the first broadcast was rather superficial.
It taught me something of how utterly bizarre and shocking ‘Lyme Land’ is to outsiders; even if they are involved and try their best to understand what is going on.
In the preparation of this second radioshow, we agreed that I would explain the listeners about the outdated ICD codes and how they support several human rights violations. But when I did, I got the impression that she was so shocked that she couldn’t allow it.
The parallel universe called 'Lyme Land' has become normal for myself, after working in it for years. But of course an outsider is shocked about the fact that the Danish State media choose to trick patients who recover from deadly illness such as ALS after Lyme treatment, simply in order to frame treating physicians. That patients who actually recover from longterm treatments are denied insurance coverage, yet are encouraged to have a - free - euthanasia injection.
About how at least fifty Dutch parents of children with Lyme were falsely accused of ‘child abuse’ - using the rare, but often misapplied ‘syndrome’ of Munchausen by Proxy as the charge. As I said in the studio: “MbP is a rare mental condition causing parents to inject poison into the veins of their children. However, some over-zealous psychiatrists and paediatricians employed by Child Protection Services turned it into a miraculous ability of parents to suddenly be able to THINK their children ill.”
While treating psychiatrists and paediatricians state they only saw one to three cases of actual MbP in parents during forty years, CPS in different countries have another view on the matter. The BBC recently reported that a shocking 5,000 British parents are accused of it.
In the meanwhile, CPS doctors try to get their PhD on ‘Munchausen by Proxy’. They go around teaching school teachers, ER doctors, dentists and other professionals that “if a child’s Lyme diagnosis is not given in an official Lyme center, the first thing they should think of is ‘child abuse’. And to report the parents to CPS.
As these ‘Lyme Expert Centers’ follow the restricted IDSA recommendations and use invalid tests (even according to themselves), many of this children cannot get an ‘official Lyme diagnose’. Which is next to impossible anyway, as children who remain ill are called ‘post-infectious’ or said to have a ‘post treatment Lyme disease syndrome’ - even when they have not been treated.
These Lyme Centers have a three month waiting list, by which time the infection will have spread and serological tests will no longer find antibodies. According to the website of the Center in Amsterdam, you will not even be allowed access, if you are not 'scientifically interesting'. Claiming a 90% recovery rate that seems to be based solely on flawed epidemiological statistics rather than on any 'evidence based' science.
But hey, “chronic Lyme does not exist”! So most of these children will simply get some nonsensical ‘somatic’ disorder or syndrome, which will allow the insurance companies to deny coverage for treatment. And their parents will - almost by default - be reported for ‘child abuse’.
Maybe the most absurd situation to be shocked about can be found at the Academic hospital in Gent, Belgium, where one department maintains that chronic Lyme does not exist, while their colleagues in another department are involved in Phase 3 testing of the new Lyme vaccin, claiming that “often Lyme is not recognized / diagnosed early enough, which can cause many longterm health issues”.
“If this would happen to people’s cars, they would revolt!”, the father of one of these girls recently told me during a phone call. Indeed. But apparently the human imagination is able to understand corrupt practices in most other industries, such as human trafficking, the creation of conflicts by the arms industry or the scandal with the 2015 Volkswagen’s fraude on CO2 emission, yet it is limited when health is involved.
Is it simply too scary to want to imagine that the current Health Care system is also simply a ‘free market economy’, aimed to monetize sickness? The lobby of Pharma and health insurance is said to be 1,5 times the size of that of the arms industry.
When interviewed about a new law in the UK to ensure research integrity, consultant cardiologist Dr Peter Wilmshurst, who submitted evidence to the report, said: “If someone was to falsify data about aircraft performance and planes started crashing, they would likely face a criminal prosecution. But falsifying data about drugs is highly unlikely to lead to a sanction, even if it kills people.”
Hopefully the first applications of this law will be to both bring the PACE authors to trial for science fraud and to stall the NICE Lyme Guidelines.
The human rights violations that are on record at the UN are listed here. In the current climate you better start learning this new language. The obstruction to things that other people assume will happen, such as proper diagnosis, access to treatment options, insurance coverage and access to proper information, is a human right violation and should be addressed as such.
As Jenna said in Boston, there are “billions of reasons” why certain stakeholders would like to keep the status quo as it is. In my opinion ‘hoping they will change anything’ will only lead to one thing: disappointment.
What I do hope is that you liked this blog article. I have been so busy traveling, working with the Ad Hoc team and interviewing experts for the On Lyme blog, that I kind of forgot about writing something on my own. I added links to those interviews in the appropriate places.
If you’d like to learn more about Lyme, I recommend you to read my book 'Shifting the Lyme Paradigm'. Not everything can be squeezed into a Tweet or an article of less than a thousand words. Some topics aare simply to complex to 'get without getting it'.
I’m working to republish the book as a softcover again in 2018 on Amazon. Too many people in the US and UK told me that they would love to have it and it seems to be even more relevant for increasingly more people then when I wrote it.
Sign up for my Newsletter, if you’d like to get a notification of it. It is still available as the Priceless e-book in the meantime.
Author of 'Shifting the Lyme Paradigm', chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes
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