My Lyme Story
My name is Alexandru and I am the owner of this website. I’ve put this website together to bring more Lyme awareness and not only, but share my story with fellow suffers, educate the doctors , patients and the people that are in danger of contracting Lyme Disease. I finally received a proper diagnose after battling a bunch of debilitating symptoms for over almost 8 years now. I have had the faith to go on with my life even if my life quality has dramatically decreased. Despite the pain and debilitating symptoms I never gave up.
No one really believed what I felt, and what I felt all these years is just pure pain. I have been many times to the point where I considered my life useless and went through terrible bouts of anxiety and depression but then again I just had to move forward because there is no other way out but in.
As an young adult, I’m 28 right now, I should have a lot of goals and plans for my life, however the life I dream of at the moment is not exactly achievable, at least it’s not as easy as many would think it is. Due to my anxiety and depression and the pain that I experience on daily basis, it’s pretty hard for me to get out there into the society and live a normal life even though I would want that from the bottom of my heart. Whenever I feel better, I enjoy talking long walks, going out with my bike and hanging out with my friends. I have tried over the last 2 or 3 years to go out as much as possible, enjoy nature, spend time with my friends but as we all know – it just isn’t as it used to be before. Lyme disease affects people in so many ways – both psychologically and physically. After years and years of receiving a myriad of diagnosis and trying to find an answer, I am finally on the right path. It’s hard to get a proper treatment in the U.S.A, imagine that in Romania it’s almost impossible – most doctors here don’t have an idea of what Lyme disease is and certainly many of them don’t even admit that Chronic Lyme Disease exists.
There is no 100% accurate Lyme Disease test and it’s not easy to get a proper diagnosis either – The lab tests come back negative even if people are infected. Thus, a negative Western Blot (or any other test) does not mean that someone is not infected (this is the biggest concern for all of those people out there that are bed-bound and still struggling to find an answer to their “mysterious illness”.
I have over 100 symptoms (probably had more along the years) but my main concerns are the debilitating headaches (tension headaches), pain at the back of my head, back pain, severe fatigue, muscle and joint pain, loss of balance, muscles spasms and twitches, dizziness (the dizziness is very similar to the dizziness that you’d have when you’re drunk), “brain fog” and an overall feeling of being sick, depersonalization and derealization - “feeling a stranger to the human race”. And for those that still don’t understand the severe symptoms that Lyme Disease patients have on daily basis or don’t believe Chronic Lyme exists please bare in mind, that what Lyme patients are going through is pure hell, and you wouldn’t want to go one single day in their shoes – not for one day. (No, it’s not a mental illness, it’s a chronic and severe spirochetal bacterium infection that affects your mind, body and spirit).
In 2004, when I started feeling ill, I didn’t know what was going on with me – I though I was losing my mind – basically that’s what I felt back then. The scariest thing was that I had severe derealization and depersonalization, severe anxiety and panic attacks that just came out of nowhere. It felt so unreal (I was trying my best to ignore the bodily pain) but everything seemed so unreal. I was so agitated, I thought I was losing my mind, I though I was going to die. Until the bouts of panic attacks started, severe muscle twitches all over my body, the dizziness and loss of balance that I could barely stand up on my feet, sudden-onset paralysis on the right side of the body, unbearable headaches that I have never experienced before, I felt as if something was eating my flesh away from inside of my body, I had chest pain and, shortness of breath, pins and needles throughout my brain and entire body, electric current going through my legs all the way up to my head. (I could go on and on with the symptoms that are literally over 200 that I have experienced so far). I ended up in the ER several times and the doctors would all only say I’m suffering from anxiety and that I’ll be fine.
Doctors have been telling me on and off that it’s all in my head, but something was telling me that something is really wrong with my body. How stupid was I to even consider wasting my time with dozens of doctors that were not able to make me feel better. I never stopped researching and I am thankful that I am finally on the right path.
My diagnoses so far are Chronic Sinusitis, Pansinusitis, Spondilosys, Poli-Arthritis, lumbar discopathy F1-F2, sacroileitis, non-infectious encephalitis, conjunctivitis, general anxiety disorder, depression, O.C.D, ADHD, TMJ, mineral deficiency, chronic fatigue syndrome (CFS/M.E), fibromyalgia, candidiasis, epstein barr virus (EBV) and other human parvo viruses, bartonellosis, and finally Lyme Neuro-borreliosis.
I clearly remember that when I left Romania in 2004, back in that very day I was feeling very healthy. A few days later, when I arrived in Italy (about 10 days later) I started feeling severely fatigued, agitated, anxious, confused, nauseous, had a buzzing sensation in my entire body, I also had a shaking sensation that I never had before, felt like I was falling off my feet and I felt like faint very often. These were just some of my initial symptoms that all came suddenly, seemingly out of nowhere.
I thought I was going to die, nothing made sense, I was so tensed that I couldn’t talk, I didn’t know what was happening to me, everything around me seemed weird: The people, the cars on the street, everything seemed weird, it’s a sensation that I cannot clearly describe in words, but honestly I thought I am going crazy, but was trying to hang in there wishing that all those symptoms would pass. Prior to this – I was a “social butterfly”. Everyone that knew me, asked me if there’s something going on and why did I suddenly become so quite, everyone was asking me what’s going wrong and I didn’t really know what to tell them.
I phoned my brother and told him that “something is not right with me” – something terrible is going on with me and I don’t know what it is.
However, none of the symptoms went away, in fact they only got worse. One day right after I finished work, all of sudden a severe tension headache and cervical pain hit me out of nowhere, with a sudden loss of balance, terrible nausea, I quickly became very anxious, also had a feeling that I would faint any minute and I also had vertigo. I immediately ran home, I don’t even remember how I got home and told my uncle to take me to the emergency room.
When I arrived at the hospital, I vomited in front of the hospital, I guess the car motion made me even sicker. (I also had severe car sickness as a kid, but this time it was all different, I felt as if I was breaking apart with every bump in the road).
At the hospital, they put me on a CT scan right away, they did some blood work and the next day they told me that I will be ok, and they don’t yet know what’s going wrong. Seemingly I did not have any tumors or anything serious going on with my brain so I was happy that there wasn’t anything serious, yet I didn’t know back then what was going to experience in the following years. They had me pay around 1000 euros out of pocket since it was a private clinic, so in that moment I decided to come back to Romania and seek further treatment for my condition here.
I never imagined back then that 8 years later I would still feel sick. Between 2004 – 2012 I have seen numerous doctors and probably spent over $40,000 out of pocket. I have been called a hypocondriac, by my family, by some of my friends and even by doctors and nurses in the Emergency Room.
These are just some of the symptoms that I have on daily basis.
- Fatigue (daily)
- Low grade fevers, ‘hot flashes’ or chills (hot flashes almost daily)
- Night sweats (rarely)
- Sore throat (daily)
- Swollen glands (sometimes)
- Stiff neck (daily)
- Migrating arthralgias, stiffness and, less commonly (daily)
- Myalgia (daily)
- Chest stiffness, pain and palpitations (daily)
- Abdominal pain, nausea (don’t have abdominal pain but the nausea comes pretty often)
- Diarrhea (occasionally)
- Sleep disturbance (I either sleep to much or don’t sleep at all)
- Poor concentration and memory loss(daily)
- Irritability and mood swings (severe, daily)
- Depression (daily)
- Back pain (daily)
- Blurred vision and eye pain (daily)
- Jaw pain -(daily)
- Testicular/pelvic pain
- Tinnitus (rarely but when it comes it hits)
- Vertigo (daily)
- Cranial nerve disturbance (facial numbness, pain, tingling) (daily)
- Pressure Headaches (severe, daily) – Cluster Headaches once in a a while.
- ‘Lightheadedness’ (evere, almost daily)
- Dizzines (daily)
I believe that Lyme disease is NOT a rare infection in Romania, it’s just that people haven’t heard about it, the laboratory tests are also too expensive and unrealiable. The treatments are very expensive so the Lyme infected people will end up getting a wrong diagnose and yet get treated for completely different health issues for years and even decades in some cases, without knowing that they’re actually suffering from a complex and systemic infection.
My symptoms always change, from day to day, from month to month, sometimes they completely go and sometimes they hit even harder, it’s a weird pattern going on. I had times when I felt better, especially when I was taking care of myself, doing a lot of exercising, running, swimming, biking and had a proper diet rich in fruits, vegetables and lots of water. I have had a period where I felt better (I though I was completely cured) – 2 or 3 months after I started feeling ill, but then it all came back again and never felt perfect since. Now I am in a relapse.
I haven’t been able to work since May this year. I have been working online for the past few years (it’s hard but I had to make a living somehow) eventually since May this year I wasn’t able to work anymore and definitely now when all the symptoms are even worse it’s even harder for me to work but I have started two new projects online that I’m working on with small baby steps and hopefully it will materialize sometime in the future.
My family doesn’t really understand my condition and never has, but at least they’re supporting me as much as they can so I am pretty lucky from this point of view. Hopefully I am planning to start picking up my “health” and start working full time on my new projects.
Sometimes, I cannot function – with so much emotional and physical pain, it’s simply impossible, but I do hope that we will all get better soon with a proper treatment, diet and lifestyle change. My heart goes out to everyone that is suffering from Lyme, I have watched numerous videos posted online by Lyme patients, and I can see the pain that they’re enduring, that I am enduring and that you are enduring and it’s not easy to go through this especially at my age when our energy should be going in a completely different directions. However, as they say, if you don’t have the time for your own health, then you’ll have time for illness.
No one can understand what this illness does to our bodies – like you’re shaking on your own feet, like the ground is moving under your feet, you feel scarred as if you’ve seen the wolf in front of you, pain and needles through your body, feeling like laying in bed the entire day, a brain fog that is so severe that sometimes I just don’t understand what people are saying (I don’t comprehend words properly), sometimes I read a book but I don’t understand it. I remember the last time I was in the emergency room I was feeling so sick that I couldn’t comprehend what the lady next to me was saying – she was trying to explain how she went through several strokes but I simply couldn’t put her words together. Despite the brain attacks she went through she seemed so much happier and healthier than me.
Despite how sick I was, I had to run around the hospital hallways, up and down from the 10th floor to the first flood several times and nobody was giving me too much attention. To top it all, I was called a hypochondriac and been sent home with the same old diagnoses. The neurologist even told me to see a psychiatrist (a friend of his of course) that claimed to be able to help me out. At this point I couldn’t take it no more because I was barely hanging on my own legs and the brain felt like it would crack any minute.
It’s unbelievable but yet, yes the borrelia bacteria can affect many parts of our body including the joints, heart and nervous system, digestive system and in some cases, sadly, it’s irreversible.
My heart goes out again to everyone that is fighting Lyme Disease and hope they’ll find their way to recovery. A healthy person would not be able to go for five minutes with the pain and all these symptoms that we’re experiencing on daily basis without going nuts, let alone living with them daily.
Yet WE have learned to cope with them and fight for our health and life. I hope that everyone suffering from Lyme and co-infections will get better and get on with their life and enjoy life as much as possible.