Real Lyme patient: Stop spreading nonsense

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Fearless girl

A story about unnecessary anxiety about Lyme disease, from the Netherlands.

Nederlandse versie: Echte Lyme-patiënt: Stop met het verspreiden van onzin

I was twelve years old when I got diagnosed with Lyme disease. Before that, I was a member of the local scouting for young girls. Scouting was absolutely my favorite hobby. We did a lot of things, like camping, going to the woods, doing activities, games, and doing practical things like chopping wood. Another thing me and the other scout girls did was getting lost by ourselves, just for fun.

One day we went to the woods to play drug trafficking. The supervisors had made fake small pockets of cocaine and weed, and we had a lot of fun. When I got home and took a shower, I noticed an insect on my leg, and I scratched it off. It stayed alive for some reason.

After two months or so, I started to get a circle like rash. I didn’t know what it was until my scouting supervisor heard me talking out it, and he told me to show it. I didn’t want to. He told me I probably had Lyme disease. He looked very shocked. I was very calm and felt perfectly healthy. I shrugged it off, but after another 2 months I still went to my GP.

He didn’t believe I had Lyme. Despite the rash, I still got a blood test, and it was officially diagnosed shortly after that. I told people that I indeed had Lyme disease and that I needed a course of antibiotics that would last three weeks. It was given to me three times a day.

People around me reacted in unbelief and shock. They started to tell me scary things. “You’ll land in a wheelchair, and it cannot be treated because it hides. It will damage you.” One of my friends had tears in her eyes. They had probably read those things online from Chronic Lyme communities. Or they said: “People get really, really, sick and need long term treatment, mostly for the rest of their life. Some die.”

But I did not look sick. Apparently, I was not like the other patients. But people around me kept worrying. Ultimately, despite the treatment I’ve had, my mother decided that she was paranoid to have me in scouting. She had read on the Internet. ‘‘I will keep an eye on you. You have a terrible disease.’’ I know her intentions were good. But the sad thing was that I gave up scouting, out of my own fear. I became paranoid.

The fact that I had Lyme became a thing in my life. When I was taken into foster care, the caregivers knew. Every physical problem I had was probably Lyme. They wanted me to take new blood tests. Never did anything show up, nor were the things I had at that time related to anything.

Due to all the alarmist comments I had gotten, and all the disturbing stories of people on Lyme forums, I became scared. I was always watching for signs that I would become sick someday. But seven years have gone by, and I still don’t show signs of Lyme disease. But everywhere I was, there was something about those with chronic lyme and the damage it had done to them.

There was ‘‘walking for Lyme,’’ and there were things like ‘‘biting into something sour (like a lime) for people with Lyme’’. When I went to the hairdresser, another girl in a magazine told about her Lyme, and that she needed € 35.000 for treatments in Germany. I was not sure if I should show sympathy, since I did not relate to the people who claimed that normal blood tests didn’t show anything.

I found out about all the fakeness later. It had never come to my mind that all of this could have been made up by quacks. I even was an intern (secretary) for one. There were many people who came there to get referred for blood tests and later treatment. Whole families suspected that they had Lyme. When I told the quack that I once had Lyme, and that it never gave me any symptoms besides the typical skin rash, he reacted distantly and agitated. He never wanted to talk about it.

My belief that chronic Lyme is not real and that quacks use it is confirmed by my own experience with those people. I simply asked about Chronic Lyme on a Reddit forum and I got death threats. Something is really going wrong underground. It needs to stop before it gets out of hand. Everyone will have Lyme, even if it’s a fake diagnosis, and those who really get it will be sucked into the insanity of the chronic Lyme patients.

I hope more people and organisations will speak out about this. Had I believed in this insanity, other possible diseases that I may have or get won’t be diagnosed. The belief in Chronic Lyme is widespread. Damage will be done to children who are being told that they are terribly sick when they are not.

“Fearless girl” image copyright Anthony Quintano (CC BY 2.0)