Artikel in the AD Amersfoort
8th of April 2016
Click on the picture to read the article in Dutch or open the following PDF.
TICK TOUR ‘WE WANT THE DISEASE TO BE BETTER KNOWN’
- Jasper, Edgar, Charlie-Robinson and Jorrit (from left to right) at the location where it’s all going to happen on Saturday: Henschotermeer. © Robert Repko
‘LOPEN FOR LYME’
This Saturday, Charlie-Robinson Poortvliet is putting on his running shoes together with eighteen others. They are going to walk for Lyme at the Henschotermeer in the Netherlands. “We want the disease to be better known and raise money for our friend Charlie,” explains Jorrit Vellema.
On Thursday evening, Jorrit (30), Jasper Kok (30), Edgar van Gijn (30) are sitting brotherly with Charlie around the kitchen’s table at Charlie’s home. They tell each other about their day. Edgar is soon to become a father. Reason to congratulate. The others talk about their busy jobs. The friends are used to it that Charlie is sharing less. He struggles with Lyme, the chronic variant and spends his time predominantly at home. He still lives with his parents, can’t work and the majority of his life takes place in his bedroom.
“I need to say that it was a big switch,” Jasper shares. “Charlie was always the busiest out of all of us. A true entrepreneur with different small businesses. Always busy with sports. And going out. Until he stayed back more and more.
The men know each other from a busy life fixated on soccer at ‘SO Soest’, the pub, poker nights and spending holidays with each other. “Charlie has only been aware of the cause of his pain and fatigue since only a few years, but is almost out of running for ten years,” Edgar explains. Charlie: “Well what can I say, personally it was always a massive fight to understand what was actually wrong with me. What is fatigue? And what is extreme fatigue? For a long time I tried my best to continue with my daily activities. Push through. Keep control. Until I realised that I needed to give certain things up. Sport, work, activities with friends were more and more pushed to the background. It took a while before I could accept it. I am not there yet.”
Charlie-Robinson was the victim of a tick bite during a jungle excursion in Malaysia almost ten years ago. On and off he had the flu for months but in his believe it was just a small virus.
Charlie went seeking for medical help in 2013. Nothing was found at first but he was diagnosed ME/CVS at a later stage. “A few months later it turned out to be chronic Lyme disease with co-infections. In principle Lyme disease is untreatable at this stage. There is no vaccination, medicine or treatment with a 100 percent guaranteed success,” Charlie explains.
Jorrit: “It’s different at an earlier stage. Most of the times they can do something about it. That’s why attention for Lyme is so important.”
Edgar adds: “That is the exact reason why we are walking on Saturday. At start, Charlie had to fight hard for recognition. Sometimes he needed to do this with us as well. I slowly learned that Charlie’s fatigue and pains were serious business. I am very shocked by the impact of the disease on his life. We have the utmost respect for him in the way he deals with this.”
Out of the 86 participating teams for ‘Lopen voor Lyme’, Team Never Surrender (consisting of eighteen people) is walking for Charlie and hope to raise 15.000 Euros through sponsoring. “Treatments, doctor and therapist appointments are often not reimbursed or partly. That’s where we want to raise the money for,” says Jasper.
Charlie wouldn’t be Charlie is he wouldn’t participate on Saturday. “Supporting us along the side, that’s not enough for Charlie,” says Jorrit laughing. Charlie is participating by running for an hour and help to raise money. “Well what can I say, it feels very special that people do this for me. At least I want to help, whatever the consequences will be. As a second, it’s also an achievement if I am able to finish the run. And in a few years I can say to my friends: “Do you remember? When we ran together for an hour!”
CHANCES FOR CONTAMINATION ARE LITTLE
Spring has arrived which means that the number of ticks will increase. Ticks that carry the Borrelia bacteria can cause Lyme disease.
In the Netherlands approximately twenty percent of the ticks are infected with this bacteria. A bite from an infected tick does not directly mean Lyme disease. The risk of the disease at a random tick bite is about three percent.
Lyme disease is sometimes identified by a red, circle-shaped rash around the tick bite. Usually the rash appears a few days to two weeks after the bite but it can also be visible after three months. Other symptoms include flu-like symptoms. At a later stage complains such as neurological, joint, skin and heart complaints may occur. The diagnosis is often difficult.
The disease can be treated with antibiotics. Each year around 25.000 people get infected in the Netherlands. Antibiotics cure most people but 1000 to 2500 keep long-term health problems. Not only people but also dogs and cats become victims.