I, Charlie-Robinson Poortvliet, am a Chronic Lyme Patient. After years of progressively getting worse, I went to a series of testing in the beginning of 2013. At first they diagnosed me with ME / CFS. CFS stands for the Chronic Fatigue Syndrome and ME stands for myalgic encephalomyelitis. A few months later they discovered that I actually suffer from Chronic Lyme Disease + Co-Infections.
Through my blog I will open up my personal story and everything that comes with it. From testing, (wrong) diagnoses, doctors, hospital visits, being chronically ill, and coping and living with Lyme Disease. My purpose is to get more recognition and understanding for this unbearable disease that is called Lyme Disease.
Blogger | Chronic Lyme Disease | Co-Infections
Who I was before getting sick
I lived a carefree existence all throughout my childhood and my teenage years. I was mainly focused on the fun things of life and I am extremely thankful for these awesome years. During Secondary / Middle School I developed a passion for running. I have always been a sports fanatic and was already playing soccer ever since I was a young boy. But I added running on age 14. On average I exercised 5 times a week.
After winning a few schoolmatches for endurance runs I decided to take it seriously. I wanted to run quarter and half marathons and achieve fast times. I combined this by playing soccer on a moderate amateur level at my local footballclub. This frequently led to injuries due to overcharging myself. But this did not stop me from pursuing my dreams.
My life as a teenager looked as follows: school, sports / exercising, working a side job in the local bar, going out with friends and having relations with lovely girls. A pretty standard and carefree existence. After graduating from my HAVO and starting my Higher Tourism and Recreation studies at Hogeschool Inholland, I had decided to run a marathon at age 18.
Easier said than done though. Going from half a marathon (21k) to a full marathon (42k) is a huge step for a body that is still developing and growing. But after a Summer of training hard I felt ready for it. At the time I was playing in the A1 of SO Soest and this meant playing a match on every Saturday and to train 2-3 times a week. On Sundays I always ran long distances and even though this was a day after every soccer match, I never experienced any troubles with it.
On October 2004 the day had finally come. After working in a pub on Friday Night, I woke up on Saturday to play soccer. Initially I was supposed to play 45 minutes, because I was running the marathon the following day. But this ended to be 90 minutes in a horrific match that we lost with 1-0. Ah well. On Sunday it was d-day. The Marathon of Eindhoven. My mother, my girlfriend at the time and my best friend went with me to support me. My father was also there to run the half marathon.
The track consisted out of two rounds of 21 kilometers each. Which meant my father was supposed to finish after completing 1 round. Swept up by the crowd and nearing the finish line, my father decided to run another round though. So we continued the run together. At about 36 kilometers disaster struck. Cramp in both my legs and hamstrings. Looking back, the preporation for this run was too heavy. And playing soccer 3 days in the last week of my run was not very smart. I was so disappointed. To be so close to the finish line and not being able to run anymore…
I did not quit however and after a 15 minute lasting struggle against the pain and cramp I was able to continue my run. This process, however, felt like hours. My dad had waited on me to recover enough to resume the run together. When I was approaching the finish line I felt no pain, just euphoria. I cannot put into words the feeling that completing a marathon gives, but it is fantastic! To win the personal fight with your body and its reserves. It felt like I could take over the whole world. From that moment on I knew it for sure. You can achieve anything with positivism, willpower and believing in yourself.
After this milestone I decided to step down and only run half marathons. This was a lot easier to cope, especially with playing soccer along side it. It felt amazing to achieve this milestone at age 18 and I was happily cruising through life as a student. Until that Summer in 2006. That a trip to Thailand would have such an impact I could never have imagined.
For the first time I had gotten really sick and I never really recovered. The things I used to do effortlessly had become impossibilities. As a teenager I was at 100 % of my strength and energy, now I am on about 20 % of my capabilities. I do not suspect that Thailand in 2006 was the moment of contamination, but it was the first time that a disease had an impact of me for a long period (more than 2 months).
After recovering from this to about 80 % I had decided to go South-East Asia again in 2008. After a jungle trip in Malaysia, a bite and a poisonous reaction and getting very sick – no alarm bells were going off at the time. I am not an hypochondriac and I had little to no knowledge of tropical diseases and diseases that are transferrable through insects/ticks. Besides, I had to go back to The Netherlands the following day. Looking back, this is supposedly the moment that I got infested with Lyme Disease.
- Chronic Fatigue
- Joint- and Musclepains
- Exercise Intolerance
- Auto-Immune disorder
and much much more…
I am constantly extremely tired. I can best describe this feeling as like I ran a marathon ánd went out with friends and drank too much. My body hurts, I get nausea when I walk and I can barely tolerate alcohol, sound or light. In my bad periods I am unable to get out of bed. I cannot move or walk due to chronic pains. Cognitively I am having a hard time focusing and concentrating. I cannot work, but even simple relaxing things like watching a movie are difficult for me. I cannot keep my attention or I suffer from a migraine.
How it effects my life
Chronic Lyme Disease is disease that has good and bad periods. Unfortunately my good periods are getting shorter and my bad periods are getting longer and more intense. In the years I was physically doing better and trying to ignore my disease (2008-2012) I tried to do as much as possible. I focussed on completing my Study and was struggling to handle everything else (work, social life, sports, relationships). (Now I live my life from one day to another) Trying to ignore the disease also made it more difficult socially than since I openly announce my sickness.
Because… How do you tell your friends that you do not want to see them? How do you explain to family that you do not want to go to their birthday? How do you tell your girlfriend that you do not want to meet? I couldn’t without hurting people. This mostly came due to not being able to give the disease a name and trying to ignore it myself. I tried to maintain all my social contacts over the years, but this turned out te be impossible. Every social choice that I made was frowned upon. I had a hard time making choices (between the people I care about and my own health) and finding a balance.
With the years I learned to live my life as optimal as possible. By eating healthy and by listening to my body. To enjoy the good days and to accept the worse days. But also by being positively egoistic and making choices that are best for my health. I am open and honest in doing so. This also means saying no 99x and saying yes 1x and hoping that people are able to join me when I feel able to do something :-).
How I deal with being chronically ill now
Now I am open and honest about my sickness. I preferably do this through my blogs. It’s easier to write everything on 1 plaftorm than to tell everyone personally in detail what’s going on. I am extremely thankful for all the messages and reactions that I have received on my blogs and my site in general! And the contact with fellow Lyme Disease warriors has become invaluable to me. I have accepted that I am chronically ill and that I might not (fully) recover. Having said that, I will not give up hope and I will keep fighting. I will continue to try out new treatments and I live my life day by day.
Relevant Medical History and Diagnoses:
- Chronic Lyme Disease
- Chlamydia Pneunomia (co-infection of Lyme)
- Cancer (but nowadays cancer free!)
- Carpal Boss (surgery went succesful)
- Appendicitis (surgery went succesful)
- Pfeiffer (overcome both old and new variants)
- Whooping Cough (overcome)
Some Past Treatments:
- Chinese Medicine
- Epigenar Protocol
- Homeopathic Remedies