“I felt like I was living dead.”

It took almost six years before Mária (we have changed her real name at her request) was diagnosed with Lyme disease after the first symptoms appeared. It was undoubtedly a difficult case, because from the outset she had so many seemingly unrelated symptoms that it was not even clear which specialist to consult. So she went to see many doctors, who either threw up their hands or just wanted to prescribe her sedatives. By the time she was diagnosed, Mária had more than a hundred symptoms, her condition had worsened so much, and so much time had passed that even Lyme therapy did not help much. Now, however, she says she is looking to the future with confidence.

Do you remember how you contracted the disease?

It was the summer of 2011. We were on a family outing when I felt a painful bite on my leg. I reflexively slapped it and saw that it was a horsefly, but apart from the pain, I didn’t think much of it, even though the bite was quite swollen. When we got home, I immediately applied Fenistil cream, which worked well. I forgot all about it until the first symptoms appeared.

What were the first symptoms?

About a week later, it started with abdominal pain. But not just a simple ache, it was a cramping pain that felt like my stomach was being scraped. This was accompanied by nausea, a debilitating headache, confusion, dizziness, and such weakness in my legs that I couldn’t walk 10 metres without resting.

Did you go to the doctor?

Of course, immediately. They did a routine blood test, which was fine, and my GP said that someone with these results couldn’t be ill, that I was depressed. I didn’t leave it at that, if only because my symptoms were getting worse. Later that year, I went to a gastroenterologist. They did all kinds of tests and diagnosed me with contaminated small bowel syndrome, IBS and reflux. They noticed that I had some kind of infection, but they couldn’t get any closer to a solution. They prescribed Normix and antacids. My condition did not improve, so I stopped taking the latter and turned to a naturopath instead. He tried to help me with herbs and homeopathy, but that didn’t make me feel much better either.

How was the diagnosis finally made? Who diagnosed Lyme disease?

I gave up going to the doctor for a while. But new symptoms joined the old ones. Sometimes more, sometimes less, but I developed concentration problems, terrible headaches, sensitivity to noise and light, drowsiness, flu-like symptoms, neck pain, eye pain, and sometimes even muscle pain from lying down. My right shoulder became so inflamed that I couldn’t comb my hair, and my hair was falling out. I often felt like I was living dead, I was not aware of my surroundings. Then in 2014, also after a trip to the lake, I was bitten by mosquitoes from head to toe, I was itching terribly, so I had to see a dermatologist. He immediately ordered an ELISA test, which came back positive. I took the results to my GP for interpretation, who again said that there was no need to worry, everything was fine. He didn’t refer me anywhere, he just prescribed a sedative. Later, in 2017, it was discovered at the Istenhegyi Genetic Diagnostics Centre that the ELISA test in 2014 had shown Lyme disease.

So you accepted your GP’s opinion and did nothing for three years, just putting up with the pain?

I tried. I also had a broken leg that needed surgery. It was probably the surgery and the mosquito bite that woke up the dormant Borrelia. New symptoms joined the old ones: earache, a very strong feeling of suffocation, shortness of breath, which was accompanied by a fear of death because I couldn’t swallow. But because of my helplessness and humiliation, I didn’t really go to the doctors anymore. Then, in the end, I had to. In 2016, I will never forget that date, real hell broke loose. My neighbour’s cat scratched me, and I caught Bartonella. As my immune system was already completely weakened, my body could no longer tolerate this infection. I developed symptoms that were truly unbearable. My eyes hurt terribly, I coughed continuously for two months, my lymph nodes swelled up, and I was overcome by extreme fatigue. I even collapsed once, felt dizzy, my gait became completely unsteady, and since then I have had a fever almost constantly; in fact, I cannot fully recover. I have a high pain threshold, but I couldn’t take it anymore and cried a lot. I started seeing doctors again. Finally, in 2017, a gastroenterologist suggested that I take a Lyme test, which came back positive for four strains.

What treatment did you receive?

I ended up with Dr Klára Esztó, and I completed a combined 50-day course of antibiotics with her, but I must admit that I didn’t feel any positive changes, and on top of that, I couldn’t tolerate the medication. In chronic conditions, several courses of antibiotics are necessary, but unfortunately my stomach was ruined and I couldn’t take them. According to Dr. Esztó, I have Lyme/MSIDS. This is the name given to the group of symptoms caused by Lyme disease and co-infections. So MSIDS involves not only the bacteria that cause Lyme disease, but also other bacterial, viral, parasitic and fungal infections. The test recommended by Dr Béla Bózsik showed that I am positive not only for Lyme disease, but also for Mycoplasma and Bartonella.

You say that the antibiotic therapy did not work, so what else did you try?

I would have had more courses of treatment, but my GP was unwilling to prescribe such a large amount of antibiotics. I no longer had the strength to fight to make them believe that I was really ill, so I decided to help myself. I started researching alternative solutions and, with the help of various South American herbs, my strength slowly began to return, I felt better and now I can more or less do my daily tasks. I spend a lot of time outdoors and try to focus only on positive things as much as my occasional discomfort allows. I am currently working from home, I am still weak, I cannot do much, and some symptoms still make my everyday life difficult, but I am not giving up. It’s a long road. Things will never be the same as they used to be because I have irreversible damage, but I am optimistic about the future. I have lots of plans and goals, and I am focusing on enjoying life.