I have learned to accept that this is happening to me.

How did she contract the disease?

My name is Rita Teplicky Nagy, and although it is difficult to accept, I have had Lyme disease for 20 years. This disease has taken many things away from me, but it has also taught me to fight and to appreciate life. I was 15 years old and grew up on a farm near the forest. I had several tick bites, and after the last one, a spot appeared. We didn’t rush anywhere, as we were probably unaware of the diseases that this insect spreads. That winter, I became very ill with fever and joint inflammation. This was made more difficult by the fact that I had to cycle 10 km to school every day in the winter, even in the freezing cold, when I was able to stand on my feet, because there were times when I couldn’t for weeks. On one such occasion, everything went dark in the heavy snowfall.

What were the symptoms?

When we first went to the doctor, I had already lost weight from 56 to 40 kg, and I was suffering from constant arthritis, a stiff neck and unbearable headaches. They asked me questions, and I told them about the bite. They took a blood sample, and it came back negative. They removed my tonsils, saying that was surely the cause and that I would feel better. No, I didn’t feel better. By the age of 20, I had been through the whole range of neurological tests, but by then I was in so much pain it was as if I had fallen from a height. In the meantime, I graduated from secondary school. I found a good job and also worked as a hairdresser. I worked a lot. My colleagues knew when I was unwell, so we would swap days or weeks, which meant I never had to take sick leave. However, my writing began to deteriorate and my hands became weaker and weaker. I used to draw a lot, but now I’ve given it up completely. Again, neurology, MRI, where they found two lesions on my brain. Hospital, spinal fluid test, suspected multiple sclerosis.

How did they realise that it wasn’t multiple sclerosis after all?

I waited for the results, everything was fine, negative. By then I was already feeling unwell in the heat, and from time to time I forgot where I was or who I was, and I often had a feeling of electric shock in my limbs. I resigned myself to it, I wasn’t imagining my pain, but they couldn’t find anything. I went to the doctor again with inflammation of the jaw joint. I was almost 30 years old and in terrible pain every day. Of all the pains, this was the most painful in my face. Sometimes it tingled and I couldn’t feel anything. Another MRI, from which I expected nothing. The neurologist prescribed vitamins and gave me the results, saying there was nothing wrong. I went home and looked at the MRI scan of my skull, which showed lesions in my brain, most likely Lyme borreliosis. I looked it up, cried, everything matched, all the symptoms. By then I was 30 years old and the mother of a little girl. My pregnancy had been complicated, I spent two months in hospital, and I had a premature birth…

Who finally diagnosed Lyme borreliosis?

I went to see a Lyme specialist. I will never forget his words. “You’re in the right place. Thank the radiologist who wrote that on the MRI.” Then it turned out that a protein present in the bacteria that causes Lyme disease was detectable in my spinal fluid. This marked the beginning of many years of antibiotic treatment. Five years have passed, and I admit it was very difficult, but I am on the right track and have had a long period without symptoms. I gave up hairdressing completely, as I didn’t know how I would feel from one day to the next, and it was difficult to stand. I am proud that I continued to attend hairdressing competitions even when I was ill, and became a hair braiding champion, even though I cried every night because my arms hurt so much. I started my own business, I can draw and paint again, and I even bought a motorbike.

Have you managed to recover completely?

Like many people, Lyme disease triggered autoimmune processes and food sensitivities in me. Unfortunately, I still have bad days from time to time, but I am on the road to recovery and have learned to accept that this has happened to me. Until I knew what I was dealing with, the symptoms were frightening, but now I know that they come and go and what I’m up against. It may be a lifelong battle, but you learn to fight and to appreciate life when you’re well. And finally, there are new developments, new medicines and hope. And two wonderful doctors.

What is your message to your fellow patients?

Unfortunately, the tests often give false results, so I completely ruled out Lyme disease despite the rash. The problem is that the doctor is also unaware of this. That is why it is very good news that an accurate test will finally be available in the near future, which will spare many people from decades of suffering. We may not be able to talk about a complete recovery for patients who have been struggling for decades, but it is possible to become symptom-free. When someone struggles with pain on a daily basis, it is strange when there are days when they do not feel any pain. Every patient is different, but every patient has the right to be cured. That is why we need to talk about these issues, so that every Lyme disease patient receives the right diagnosis, treatment and a good doctor.