In recent years, there has been an increasing attention in the media for Lyme disease, which makes more people aware of the fact that there is something very strange and scary going on. Would it be possible however that this disease also has something beautiful to offer, besides all the misery it causes?
The fact that life can be hell is no news to the millions of people worldwide, who are suffering from Lyme Disease, its co-infections or its many, many misdiagnoses such as Alzheimer's disease , Chronic Fatigue Syndrome, fibromyalgia, multiple sclerosis or arthritis. These people desperately want to get recognition for the disease. Why do they and what would it take to achieve that?
Many people don’t understand why I made Lyme my business, as I am not offering a medical solution for it. Why would I spend years of my life educating the public about it and working to connect professionals from different backgrounds to create impact? What makes Lyme so different from any other health issue? Why does the social-emotional side of Lyme seem to hurt even deeper or his a larger impact than the physical side of it?
Recently Dutch national television highlighted how at least fifty parents of children with Lyme were accused of child abuse by the Child Protection Services during the last two years.
Exactly a year ago, my friend Carla got a notification to report on her progress on job applications. She is in an electrical wheelchair and had one arm amputated. Regardless, she had to visit the office of the UWV, the Dutch institution which deals with disability status and payments. “Apply for a job!? As what? As a sign post for the Dutch Rail?”, I asked, when she told me somewhat flabbergasted. At least that made her smile again.
In the prior post about the events on Friday the thirteenth, when an ill girl with Lyme was forcibly taken away from her parents, I promised to try and explain what seems to happen in situations like this. Based on what grounds do Child Protection Services interfere with a family life, which was under strain already?
Last Friday, on Friday the thirteenth, six policemen and three government officials took an ill girl away from her parents. Her parent lost custody over their fifteen year old daughter, who suffers from Lyme Disease.
A Dutch court just ruled that a local goverment could not stop paying the daughter of an elderly woman, for cleaning her house. Two hours a week.
Suppose. You don’t feel well. You ignore it first, pretend to be able to go on with your busy life. It will go away, you think. But it doesn’t. There is even a swelling visible. So you visit your doctor, who sends you to the hospital. The specialists do their tests and you get the diagnose: cancer.
How to interpret Lyme statistics? Numbers tend to give a sense of certainty. A month ago the national Dutch TV program “Care.now” opened with this sentence: “Lyme Disease is an epidemic in the Netherlands, because 25,000 people suffer from it.” Many patients were happy with this public recognition. As a researcher and author I wondered: how useful are statistics in Lyme Lands?
The SEP syndrome is a widespread - although not commonly known - psychological mechanism. There is however no subject in which it is so epidemic as in the topic of Lyme Disease. How is it possible that all involved and even uninvolved parties seem to believe it is Somebody Else’s Problem?
If you want to begin to understand the complexity of Lyme Disease, you need to know how the Borrelia works. Not only does Lyme show up as more than 300 different diseases, but the Borrelia also changes shape.
The Dutch medical Journal "Medical Contact" has recently been publishing a number of columns about Lyme Disease, written by doctors. This journal is the main source of information for Dutch GP's. Here you can read the text of the column published on July 25, 2016, written by neurologist Emile Keuters.
Recognizing Lyme is very hard. The Borrelia, which is causing Lyme, is called ‘the great imitator’. A spirochete is a type of drill-shaped parasite that needs a host body to survive. Lyme shows up as more than 300 different diseases in disguise, as you can see on the cover of this e-book. In order to better understand this, you need to know that the Borrelia has a famous ‘cousin’. That cousin is the spirochete Treponema pallidum, which caused Syphilis.
Apart from being ill, people with Lyme have several problems. Without official acknowledgement and diagnosis of (chronic) Lyme, insurance companies do not cover long-term treatment or even painkillers. Even if the doctor is willing to test, his tests are not reliable. Most doctors do not know this.