I was trapped by an invisible illness hiding behind my mind, and I almost thought I was going crazy.
2023 – The Year I Got My Diagnosis
It was in 2023 when I finally got my diagnosis: late-stage multisystem Lyme disease with co-infections. But my story actually started years earlier, quietly and sneakily, without me even knowing. By the time I realized, Lyme was already controlling everything. Around 2018, I started feeling worse and worse. At first, I was just tired all the time, then completely drained. Then depression crept in, followed by hormonal problems and recurring urinary issues. Back then, I never thought this was the start of something that would turn my whole life upside down. I went from doctor to doctor – gynecologist, urologist, endocrinologist – but all I got were treatments for the symptoms. Even then, I didn’t connect the dots or think it was something serious.
~Did you know? Lyme disease doesn’t just attack your joints or nervous system. It can also affect your hormones, urinary tract, and reproductive organs. In some cases, it can even cause miscarriages. That’s why it’s called a multisystem disease—because there’s almost no part of your body it can’t touch.
2020 – The Breaking Point
This was the time when COVID hit hard. At the end of that year, I caught COVID, and what happened right after was pure hell. Out of nowhere, overnight I slipped into a completely psychotic state. It felt like I was suddenly hit with a bucket of mental symptoms: depersonalization, derealization, extreme anxiety, deep depression, panic attacks, suicidal thoughts, obsessive thoughts and images (OCD), hypnagogic and auditory hallucinations… I had trouble sleeping and experienced anxiety that cut to the bone. It was like I had been thrown into a never-ending, horrifying nightmare. Eventually, my dreams and reality completely mixed together—and I was all alone in it. Mentally, I was so broken that I voluntarily checked myself into a psychiatric hospital, with a friend accompanying me. There, they tried to treat me with medication—tranquilizers and antidepressants. I had never taken these kinds of meds before. For a while, the noise quieted down, but only on the surface. It was like trying to fix an open wound with a band-aid. After some time, the meds actually made me feel worse, and I knew deep down that something wasn’t right. Later, they added a mood stabilizer to the mix, which made everything even worse. I was almost wrongly diagnosed with bipolar disorder, and one psychiatrist even wanted me to start lithium without proper testing. Deep inside, I just felt there was something bigger, deeper, and more complex going on. So, I decided to stop taking the meds.
~Did you know? Many people with late-stage Lyme disease and co-infections first end up in psychiatric care, often getting misdiagnosed. Doctors usually send them to mental health specialists or gaslight them by saying their symptoms are “all in their head.” This delays proper Lyme diagnosis and treatment, and can seriously worsen both mental and physical health.
Here are some articles about how Lyme and its co-infections can cause personality and cognitive changes:
https://www.amenclinics.com/blog/can-lyme-disease-change-your-personality/
https://www.globallymealliance.org/blog/youre-not-crazy-you-have-lyme
https://danielcameronmd.com/7-year-old-girl-lyme-disease-presenting-attention-deficit-disorder/
~Did you know? The bullseye rash only shows up in about 30–40% of cases. That means the majority of people (even 60–70%) don’t get this typical skin sign!
2021 – I Almost Died Quitting — And Nobody Cared
It was 2021 when I decided I’d had enough. I wanted to stop taking my medications. Unfortunately, the healthcare and mental health system in Hungary is quite outdated and mostly sees prescribing meds as the only solution. But the meds were only making me worse. By then, I had been on tranquilizers, antidepressants, and a mood stabilizer for a year—even though tranquilizers are only meant for short-term use in acute phases. I wanted to start quitting with Frontin and asked my psychiatrist for help, but their attitude was so frustrating: dismissive, rude, and they gave me no guidance at all. Naively, I thought I could just stop overnight — what they call going “cold turkey.” Then the withdrawal symptoms hit me hard, but not in the mild way you read about. This was hell. I couldn’t sleep for days — not at all. My body was shaking, my heart was pounding, fear seeped into my bones, and my nervous system felt like it was being hit by a brutal tsunami. No one warned me this could happen. I had no idea it could be this bad. Desperate, I talked to an addiction specialist. They immediately told me to raise the dose again because this was life-threatening and I could die. I was in shock. How is it possible that doctors prescribe such strong nerve poisons called “medications,” but nobody warns you that stopping some tranquilizers can be deadly?
Before I raised my dose again, I tried one last time to reach my psychiatrist. Their only response was: “I don’t have time for this now. You can’t have withdrawal symptoms like that. You probably caught a stomach virus.”
I was furious. That was not only unprofessional, but extremely dangerous. Since then, I’ve sadly realized that in Hungarian healthcare, you hit walls everywhere, and ignoring patients is common. The system is full of medical gaslighting. Patients’ feelings, symptoms, and concerns are often dismissed. Empathy, knowledge, and human care are almost non-existent. If you’re not careful and don’t stand up for yourself, the Hungarian system can pull you into a mental hole—and keep you there. Especially mental health care: the answer to everything is always medication. More and stronger meds, often at the cost of your personality. They don’t look for the real reasons behind your complaints. They only care about symptoms—but people aren’t just symptoms.
I started researching. Articles, international medical studies, survivor blogs — what I found blew my mind. Benzodiazepines—like Frontin and similar meds—are highly addictive, and quitting them can mean months of nervous system nightmares. SSRIs can also cause serious withdrawal symptoms, depersonalization, anxiety, and even stronger suicidal thoughts and other problems. Why isn’t this talked about openly?
Eventually, I increased the dosage again so I wouldn’t completely fall apart, and at the same time, I ended my relationship with my psychiatrist at the time. This happens to a lot of people — they just don’t talk about it (or can no longer talk about it). After increasing the dosage, I was finally able to taper off all the medications very gradually, with a lot of care and in very small steps. Although the process was far from easy…
~Did you know? Chronic Lyme disease isn’t accepted everywhere, and some doctors don’t even believe long-term infections are possible. There’s a lot of disagreement in the medical community about it. Some infectious disease doctors think that once you finish a short course of antibiotics, you’re cured. They call any leftover symptoms “post-Lyme syndrome” and don’t think the bacteria is still there. But Lyme specialists (like ILADS doctors) say the bacteria can survive treatment and keep causing problems. They often recommend long-term, combined antibiotic treatments. For some people, long-term antibiotics help, but for others, they don’t make much difference. Sadly, some Lyme doctors—especially in the US—have faced legal or professional trouble for treating patients long-term. This has made a lot of people afraid and mistrusting of the whole system.
End of 2021 – New Suspicious Symptoms Appear
Just as the chaos of quitting my medications and the nightmare of withdrawal symptoms was ending, I started noticing new suspicious symptoms. I temporarily lost hearing in my left ear, which lasted for weeks. I went through various tests, but of course, they didn’t find anything. My ear kept ringing and buzzing more and more, and my limbs started to go numb and started to tingle. I even went to see a neurologist. An MRI showed tiny spots in the white matter of my brain. (This can happen in multiple sclerosis, but also in Lyme disease.) By this time, I had already done a lot of reading and research, trying to piece together what might be behind all this, but the picture was still pretty unclear. Around the same time, my tests for multiple sclerosis also began.
There’s a story of a young girl with Lyme disease: https://www.globallymealliance.org/blog/romy-rosens-15-year-odyssey-with-chronic-lyme-disease
2022 – When My Body Fell Apart
In 2022 I got COVID for the second time. That was the moment my body finally gave up. Just like in 2020, as I was fighting off the virus, a storm of symptoms hit me again. But this time, it wasn’t my mind that was under attack—it was my body. It felt like someone had poured a bucket of pain over me, out of nowhere. Muscle pain, fibromyalgia-like symptoms, cramps, stiffness, weakness, nerve pain all over my body. Tingling, numbness in my arms and legs—it felt like being stabbed with needles and knives. At one point I could only crawl to the bathroom and I couldn’t even wash my hair because I couldn’t lift my arms. One night I woke up and my hands were stiff, like a T-Rex’s. On top of all that, I was hit with migraines, nausea, brain fog and electric shock-like nerve pain.Then my digestive system joined the chaos. I started having food intolerances, histamine sensitivity, and MCAS-like reactions. I became like a ticking time bomb. I was at the ER constantly, and eating became a game of russian roulette—every meal triggered some allergic reaction, and I never knew how my body would respond. Eventually, I switched to a gluten-free, vegan diet, and later worked with three different dietitians to figure out what I could safely eat. I’ve stuck to the gluten-free/vegan path, but even now, my diet is extremely limited. Almost everything seems to cause a strong reaction or some weird symptom. By this time, I had done so much research on forums, in groups, and international sources that I was pretty sure I had Lyme disease. And unfortunately, I also had the “pleasure” of experiencing firsthand how poorly this illness is handled by many doctors here in Hungary.
~ Did you know? Many Lyme patients around the world are misdiagnosed for years—often told their symptoms are “just psychological.” Some are treated for anxiety disorders or even multiple sclerosis, while the real cause, a chronic infection, goes undetected. Because of this medical dismissal, it often takes years to get a proper diagnosis. By then, the disease can progress, causing serious complications or even triggering autoimmune conditions.
2023 – The Truth Revealed: When the Nightmare Finally Had a Name
The diagnosis finally came. The one I had suspected all along—but nobody had taken seriously. For a brief moment I felt relieved. But instead of comfort reality hit me like cold water: just because my suspicion was confirmed didn’t mean the people around me suddenly became more understanding or supportive. The diagnosis didn’t bring peace—it brought new burdens. The medical system isn’t just cold and contradictory here in Hungary—it’s the same around the world. The Lyme community is full of desperate voices and horror stories. Paralyzed lives, misdiagnosed cases, destructive antibiotic treatments that ended up doing more harm than good. I was terrified. That fear held me back from starting the official medical treatment.
So many people are afraid of being treated with antibiotics—or worse, being mistreated altogether (which, let’s be honest, happens far too often). This is why many turn to alternative approaches: bee venom therapy, herbal protocols, traditional Chinese medicine, German New Medicine, strict diets, piles of supplements… Everyone swears by something, but no one really seems to recover fully. Our resources, energy, and patience are slowly being drained…
In order to survive, you need something to hold on to. And I grabbed onto everything that offered even temporary relief. Support groups, forums, articles, blogs, conversations with others going through the same…Eventually, out of desperation, I too tried alternative methods and got lost in the maze of all the different “therapeutic directions.” Many of my symptoms improved or faded—but the root of the illness remained. It kept silently working inside me, under the surface.
Looking back, all the signs were there: the bacteria had likely been in my body for a long time. Lyme bacteria can lie dormant in the nervous system for years, without clear symptoms—or with ones that are so vague, no one recognizes them for what they are. Then, a trigger can activate them suddenly. For me, that trigger was most likely COVID. Lyme disease doesn’t always show up as the typical red rash. I never had one either. And being chronically ill… is brutally lonely. It isolates you—especially when those around you don’t understand, or don’t even try to understand what you’re going through. All you run into are walls.
2024 – The Price of a Diagnosis: An Illness You Can’t Afford
The time I had spent on alternative methods started to feel like wasted time. The improvement was minimal, and I couldn’t wait any longer. So, I went back to the doctor who had previously confirmed what I had long suspected: I was living with Lyme disease.
The road to treatment was long and bitter—I had to wait six months just to see her again. In Hungary, there are only a handful of specialists who deal with the complex treatment of Lyme disease. The public healthcare system offers no real support. In fact, it doesn’t even formally recognize late-stage Lyme as a legitimate condition. The “official” Lyme tests are unreliable, which means we’re forced to pay for private diagnostics. That means Lyme patients are battling not just physical and mental symptoms, but also their financial limitations. While waiting for treatment, I was tested for multiple autoimmune diseases—ALS, myasthenia gravis, rheumatoid arthritis…All results came back negative. Lyme is often called “the great imitator” for a reason. It can disguise itself and mimic the symptoms of other diseases. That’s one of the reasons so many people are misdiagnosed—or diagnosed far too late.
~Did you know? Chronic Lyme disease is a real and serious condition, but the medical world still doesn’t agree on how to treat it. The tests aren’t always reliable, so diagnosis often has to be made based on symptoms rather than lab results. Treatment is complex, long-term, and extremely expensive. Co-infections like Bartonella play a big role in keeping symptoms around. Bartonella is a pretty common co-infection—it can also be spread by ticks, fleas, or even mosquitoes. It often shows up alongside Lyme and makes the symptoms worse. It weakens the immune system and makes Lyme much harder to treat. More and more doctors are starting to realize that many failed Lyme treatments may actually be due to untreated co-infections like Bartonella.
2025 – The Weight of the Lost Years: I Don’t Know When It Ends, But I Won’t Give Up
I’ve already completed one round of antibiotic treatment, and I’m currently going through the second. The past years have left deep marks on me—especially emotionally. I’m exhausted, both physically and mentally, but I’m still here, and I haven’t given up. Friendships faded. Connections drifted away. I didn’t have an emotionally stable background, and I missed out on so much of what we call life. Lyme took a lot—too much—from me. But there’s one thing it couldn’t take: my desire to live.
I still don’t know when this road will end, but I’m holding on. I always find something—however small—to cling to. And I truly believe that one day I’ll get my life back.I want to move freely again. To go out, attend events, travel, discover new places, meet people, build deep, supportive relationships, taste new flavors—feel life through all my senses. I didn’t write all this to gain sympathy. I wrote it because I want to raise awareness of how important it is to pay more attention to each other—because we never know what burden someone may be carrying. Most people living with chronic illness fight their battles alone and unsupported. It’s crucial to recognize that chronic conditions aren’t always visible, yet they transform a person’s entire life, thoughts, and even personality. Right now, I’m extremely tired and have very limited energy for everyday tasks, so I have to ration it carefully. Even a short walk is difficult—my nervous system is in a hypersensitive state. My body reacts intensely to vitamins, supplements, and food—sometimes with painful, unpredictable symptoms. Still, I do everything I can in my daily life to push through the low points. I won’t lie—this takes a tremendous amount of effort and energy every single day. But I believe that one day, all of this will pay off.
~Did you know? People living with Lyme disease are often met with dismissal and misunderstanding—because they “don’t look sick.” As a result, their symptoms are frequently not taken seriously. The invisible nature of the illness can lead to gaslighting, while internally they are fighting a very real, daily battle. Many end up feeling isolated, as if no one truly believes them or understands what they’re going through. This can lead to a strong sense of shame—because they can’t “perform” as expected, or because they’re “always sick.” People may withdraw, especially when they have to cancel plans due to unpredictable symptoms, which can strain relationships. Many blame themselves or try to hide their symptoms, just to avoid being seen as weak. Some develop long-term post-traumatic stress from repeated medical dismissal and lack of support from their surroundings.
I hope these words bring strength to those who still feel like outsiders in their own lives—because I truly believe the day will come when we can be part of life again.
If you’d like to gain deeper insight into Lyme disease and its co-infections, there are three well-made documentary films available for free on YouTube. They powerfully illustrate what patients go through while living with this illness. Unfortunately, they are not available with Hungarian subtitles, but they can be watched with English subtitles:
https://www.youtube.com/watch?v=2JgR_Jfbhv8&t=5s – Under Our Skin
https://www.youtube.com/watch?v=pr3BpheyO7Q&t=3s– Under Our Skin 2
https://www.youtube.com/watch?v=C5uFkZnY7hI – Our Bottle Ongoing: Lyme Disease in Australia | Full Documentary
I also recommend watching the following trailers →(Unfortunately, the full-length films on this topic are not available in Hungary, but I’m working on getting access to some of them. If I succeed, I’ll share them on the blog. Until then, the trailers are still worth watching—they are quite eye-opening!)
https://www.youtube.com/watch?v=DhK9o_ydNhY – Lighting The Path – Autoimmune, Lyme Disease Documentary
https://www.youtube.com/watch?v=I4C71N290co – The Quiet Epidemic – Official trailer
https://www.youtube.com/watch?v=aShcCDgwpUU– The Monster Inside Me Lyme documentary
https://www.youtube.com/watch?v=ci-g9KprnpI– I’m not crazy , I’m sick -> There’s also a great article available on this: https://www.statnews.com/2023/06/21/lyme-disease-chronic-im-not-crazy-im-sick/
Finally, I’d like to share the story of a dear friend and their battle with Lyme disease:
“I spent a million forints before I finally found out what was wrong with me” – Eszter Sinka, a nurse, faced the horrors of Lyme disease.” – https://noivalto.hu/az-en-tortenetem/sinka-eszter-lyme-kor/
I would also like to emphasize the importance of making this disease visible and acknowledged. Chronic Lyme disease is not just a figment of imagination or an exaggeration — it is a serious, daily challenge that affects every aspect of life, yet far too many still don’t take it seriously. Let’s give a voice to those who suffer in silence and show more empathy towards them. For a Lyme patient, the greatest gift is a stress-free, supportive environment where they find understanding instead of doubt. Thank you for taking the time to read these words. The next post is coming soon — stay with me so we can continue giving a voice to the silent warriors together!