About 1.5 million people are bitten by ticks every year. That leads to about 27,000 cases of Lyme disease each year. And chances are, this is just the tip of the iceberg, as the disease can be difficult to spot and it often takes years for patients to be diagnosed – if at all. Eva, Lidewij and Lisanne can all talk about that.
“Scratching a tick is exactly what you should not do”
Lisanne van der Vaart (31) contracted Lyme disease eighteen years ago during a camping holiday in France and still experiences the consequences every day.
“Every year we went camping in France, I slept in a tent. One day I woke up with a thing near my lip. I scratched it off – did I really know it was a tick? Scratching a tick is exactly what you shouldn’t do, because then it releases all its stomach contents including possible pathogens in you, but I had never heard of Lyme disease.
I would never have thought of it again, were it not for the fact that red circles suddenly appeared on my hands a few months later. That characteristic circle that many people know about can therefore also appear in a different place than the place where the tick was. I got all kinds of vague complaints. I caught a cold, very tired, a bit flu-like. Got headaches, neck pain and concentration problems. And I haven’t really gotten better since then.”
“Over the years it only got worse. Of course I went to the doctor, but he couldn’t find anything at first. Later I developed an autoimmune disease of my thyroid gland, a chronic vitamin B12 deficiency and epilepsy. Those things were taken seriously, but doctors didn’t understand where all of this suddenly came from.
Meanwhile I got sicker and sicker, I got more and more pain. It took me seven years to complete high school and while all my classmates went to college after that, I just wasn’t up to it. Not physically, but not mentally either – my memory was failing.”
Highest dose of painkillers
“Six years ago I was at my very sickest. I weighed only 49 kilos and lay in a dark room all day. Screaming and crying in pain, while I was on the highest dose of painkillers. I was in pain everywhere, especially in my head. Walking to the toilet was already not an option, so I had a camping toilet next to my bed. I was completely through it, didn’t want to live anymore. I seriously considered euthanasia.”
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“I had already undergone many treatments in the Netherlands, but they all ended with the conclusion that they could not help me any further. My parents then decided that we should seek refuge in Germany. It was possible to undergo stem cell treatment there. We drove there in a van, I slept on a mattress in the back for a large part of the journey. I did not know if I would survive the journey, but that did not matter to me at that moment.”
sleeping 16 hours a day
“The stem cell treatment to improve my immune system has helped a lot. I’m still sick and limited, but not as extreme as before. I’m doing a lot better. I sleep about 16 hours a day. Physically I’m still not able to do much; I can’t walk long distances, and a normal full-time job is really not possible. I’m 100 percent disapproved.
Well I have a blog where I work 2 to 4 hours a week and earn a large part of my income. Much more is not possible, because I still have pain complaints, memory problems and difficulty processing stimuli. Furthermore, I have difficulty with light, sound and smells. I hope it gets better in the coming years, but it’s hard to say with this disease.”
“When your muscles are failing and your heart is struggling, it becomes very exciting”
Lidewij Boeken (33), Lyme patient and board member at the Lyme associationwas diagnosed about 15 years too late, she says.
“It must have been around the age of 10 that I contracted the disease. I was bitten by ticks several times at the time. Even then, vague complaints arose, which became increasingly clear over the years. I always had something. Restless legs, headache, shortness of breath.
When I was 15 I was half paralyzed in my legs. Later I experienced tremors, uncontrolled tremors, severe nerve pains, muscle wasting, muscle weakness, cardiac arrhythmia, epilepsy and very severe fatigue. And I was paralyzed in my tongue for a while, so I couldn’t talk, eat or drink. At one point I was completely bedridden, all I could do was lie in a dark room, without sound. There was a lot going on, but it hasn’t been recognized as Lyme disease by doctors for a long time.”
Advanced stage
“It was only in 2012 that I was diagnosed with neuroborreliosis (Lyme in your nervous system, ed.), stage 3, with co-infections. On the one hand, I was happy that I now knew what it was. I thought: great, then we’ll put a pill in it and then I’ll get better. But unfortunately it doesn’t work that way. Certainly not if the disease is already at such an advanced stage as it is with me.
The diagnosis was finally made in Germany, because I asked the last doctor to whom I was referred whether it could be Lyme disease. That was indeed possible, he said, but he advised me to have it investigated in Germany because there is much more expertise in this area. I have done that.”
“The German Lyme specialist I came to handled things with a very intensive treatment; a lot of pills and an infusion of antibiotics every day for years. And I am still being treated, now through the best Lyme specialist in America. In my case it has been life-saving. I was really seriously ill. When your muscles fail and your heart is difficult, it becomes very exciting. Lyme is a multi-system disease that can eat everything. In the worst case, you can even die from it.”
Years of waiting for the correct diagnosis
“One of the problems with Lyme is that there are no reliable tests for it. And although the RIVM made known years ago that the blood test alone should not be decisive in making the diagnosis, many Dutch doctors do not seem to be aware of this. If the test is negative, you don’t have it, is often the idea. While you also have to look at the health complaints and the medical history.
Because of this lack of knowledge – and also because the symptoms are very diverse and often similar to those of other diseases – it sometimes takes years before people receive the correct diagnosis. And then it is sometimes at such an advanced stage that the question is what can be saved.”
“Fortunately, my situation has really improved. When I look at where I come from, it’s going great. But if I compare my life with that of healthy peers, I’m really still seriously ill. I haven’t been able to work for years.
I had to relearn everything. Sit, raise my arm above my head, move my foot, get up, stand, walk. I couldn’t do all that anymore. So yes, I’ve come a long way. If I stay stable I am already very grateful for that, but of course I hope it gets even better. Every percent improvement is a bonus.”
“I try to get everything out of the day, even if it’s on my gums”
Eva Groeneveld (41) has known for about ten years that she has Lyme disease and also has another hereditary disease.
“Lyme disease is normally difficult to diagnose, and especially for me. Because I have Ehlers-Danlos syndrome (EDS), a congenital and hereditary disorder in which the connective tissue is not properly formed, it was unclear which complaints belonged to which.
The glands in my neck were always swollen, I often had a sore throat, was dizzy, terribly tired, had pain in my joints – I could attribute that to EDS. But the heavy night sweats and my hazy brain, which made me look at the world half stoned and was incredibly forgetful, they had to be caused by something else.”
“When one day I list of possible symptoms of Lyme disease, everything fell into place. I was able to tick off almost all of them. A blood test in Germany confirmed that I have it. But that knowledge doesn’t help me much; there is no proper treatment.
It limits me so much in my life, I find that the hardest. It’s now 11am and I’m back in bed, I’ve just walked the dog and I’m broken again. I’m also often in pain, my words are bad, I’m forgetful. I can’t work, I’m 100 percent rejected. That’s spicy.”
No level to raise
“Nevertheless, I try to get everything out of the day, even if it is sometimes on my gums. There are days when I feel very good, then I can go to a festival or the gym in no time. Other days I can’t put one foot in front of the other. There is no level to be measured.
It is difficult for people who are further away from me to understand that they see you sporadically in the pub but at the same time hear that you cannot work. And I actually understand that. I don’t look sick, take good care of myself. People don’t see how much pain I’m in and how much time I’m forced to spend resting.”
What should you watch out for after a tick bite?
Lidewij Boeken of the Lyme Association would like to clear up some misunderstandings. These 5 things are important to know:
The sooner you remove the tick, the better: “It is often wrongly stated that you can only become infected if a tick has been attached for 24 hours. It is possible before that.”
You may have contracted Lyme even without a red ring: “If you have the red circle, you have Lyme anyway. But half of the Lyme patients have never had such a red circle. Be aware of that.”
You can protect yourself against ticks: “Many people don’t know that, but there are tick repellent sprays for sale. That is of course no guarantee and you still have to check yourself and your children for ticks every evening, but it is at least something.”
Remove the tick correctly: The Lyme Association sells a drawing card, a kind of card the size of a debit card. This allows you to remove ticks easily and safely. In any case, never do it with alcohol or peppermint oil, because then such a tick will spit its entire stomach contents into your bloodstream, including all pathogens it carries.”
Ticks are everywhere: “Not only in the woods or the park, but also in the backyard or on the terrace. Many people get a tick around the house.”
The Dutch Lyme disease expertise center puts a few more facts & fables in a row.
2023-07-21 09:15:49
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