Sunday, 15 March 2015 16:20

Charlie never gives up

Written by Meta
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Charlie Poortvliet (28) uses his skills in PR to attract attention to his fight with Lyme Disease. 

By: Meta de Lange, research journalist.

Charlie responds fast to a request on Facebook by the On Lyme Foundation to be interviewed by me. Since he is too ill to meet or even have an interview by phone, I mail him my questions:

His Dutch blog is filled with articles and videos. He made the logo for it himself.  The green banner symbolizes his fight with Lyme, while the purple one indicates the fact that he conquered cancer. The two together have the shape of a horizontal number eight, a lemniscat, which is the symbol for infinity. Charlie’s initials CRP are in the middle of the logo. The R is mirrored, which is the Russian spelling for ‘I’. When I read his website, I saw in the tab ‘Who am I” that Charlie had been an active teenager. He loved soccer, girls and was very outgoing. In the summer of 2006 he went to Thailand. Something went wrong there. He suddenly fell ill and never recovered.

First of all, congratulations with the result of your fight with your cancer and the fact that you are free of it! But I am sorry to also read on your blog that the start of this year has not been good for you. How would you describe a day in a period in which you’re not doing well? And could you try to explain how your body feels on such a day?

Thank you! During my bad periods I am in bed most of the day. Depending on what symptoms are most active, I try to get the maximum results out of my day. On those days it is neither possible for me to leave my house or to go for a little walk, unfortunately. But at least I force myself to at leave my bed to have breakfast or to take a bath – even though it’s an ordeal to do so. In the afternoon I mostly have a couple of hours that I do a little better, in which I can answer my mails for example. After diner, I need to get back to bed. If I am well enough, I can watch TV series or a movie. If not, I just lay there staring at the ceiling.

My body feels like three trucks just ran over it, while I have a huge hangover and ran yesterday’s marathon as well. When I am doing better, it ‘just’ feels as if I have a heavy bout of flue. You know, the ones that make you feel really tired and which cause you to have pain all over your body?

Can you imagine how the Borrelia bacteria, how it moves through your body? Can you explain to me what you feel and see? How would you describe it? They way it operates as well as its character and traits.

The Borrelia and his colleagues Ehrlichia, Rickettsia and Chlamydia Pneumonia are waging a very clever type of warfare on me. In my good periodes they give me the illusion that I am winning. But in reality they just lay low and wait for the right moment to strike again - without mercy. Sometimes it seems to me as if a whole squadron of little animals are crawling under my skin. As if they settle somewhere to perform a next sting operation, which causes nerve pains, to only move again and to prepare the next attack from another location.

During my bad periods they know how to completely disable my body. Somehow they manage to arrange for other little viruses and bacteria, which even make me more ill. They seem to gloat in my miserable experience.

Somehow I do find it intriguing how intelligent and complex this Borrelia is. For example, it senses when it needs to hide and when it can strike out. This been said, I am determined to show the Borrelia and his colleagues once and for all who is the boss over my body!

A whole range of complaints or symptoms can typify Lyme Disease. It is such a long list, that everybody should be able to recognize himself or herself in it. What is your view on this?

I understand how people feel about this. For me this is an example of how sly the Borrelia is. It imitates so many diseases that it is hard to exactly pinpoint it as the cause of these many symptoms. That is why it is so important to see the complete picture and not just focus on one or two separate complaints. Unfortunately, the standard Lyme tests used in the medical system do not give any security, because they give too many false negative and false positive test results. I think it is very important that good Lyme tests are developed as soon as possible, so they can be used with all people with unexplained complaints. How great it would be to just be able to test the blood of the people once and be able to exclude Lyme as the cause? Or to be able to find it as the proper diagnose and start treatment fast and with adequate means?

Some people swear that only antibiotics can overcome Lyme, while others find hope in alternative treatments. It seems that, in case of Lyme, what works for one person, proves to be a disaster for another. What struck me, was that you take the reader of your blog by the hand and guides on your own search for treatments and therapists that could help you. You seem to take matters into your own hands, instead of waiting for someone to present you a solution. I saw you even made your own personal schedule. How do you approach all these different experiences with solutions and approaches to this disease? It would confuse me immensely...

To me the most important thing to realize is that we are all searching for how to get better. For each of us, the way to recovery may be different. If not, there would be one doctor, one method or one medicine that would help us all. I look at every tip or suggestion of visitors of my blog.

Yet in the end, it is up to one’s own personal experiences with (natural) antibiotics / treatments, therapies and doctors. I am still constantly searching and in my blog I am just trying to show how my thinking evolves. I also give feedback on how I experienced the different treatments I selected in the hope that others find it useful.

What I find sad, and which sometimes hurts, are the discussions amongst people who suffer the same fate. To criticize the treatments of others is pointless, in my opinion. Our roads are equally tough, so let’s at least respect the choices we all make for ourselves. What helps one, does often not help another. That is a fact. Still, I would like to hear what benefits other people. Even if the only reason is to hear successful stories, which I think exist far too little.

In 2013 you heard that you had Lyme. In that same year you started your blog. What was your motivation to make your fight with Lyme and cancer public?

My motivation to share my experiences with my battle with Lyme publicly is the ignorance about it. I feel it is important to draw more attention to the subject and to clarify what it means to have and fight this disease. I try to contribute to this awareness by my blog.

When my blog was already online, I also got cancer. This would not have been a subject that I would have made public. But since I was already open about my Lyme fight, it just felt right to include it. Especially because it is suspected that Lyme can cause cancer.

You have changed from being a young sportsman into a condition of serious illness in only a few years. How much did the disease affect you as a person?

It changed me tremendously, but not necessarily in a negative way. Of course it is a bit sour what happened to me. Everything I had has been taken away from me: my physical condition (sports and fitness), freedom (to be able to go and do whatever I wanted), my work, my financial stability, my social life, and so on. Accepting this has not been easy and took me a long time. I would lie to you if I would say I do not miss parts of my old life.

But this disease also taught me what is really important in life. It brought me a level of acceptance and adulthood that I did not have before. Happiness is not a result of success in society, but it does relate with doing what you love to do. To find pleasure in what you do. Surrounded with the right people, with whom respect and unconditional acceptance is leading.

The diagnose cancer was an eye-opener to me. First the plain shock and later the realization that it could be caused by Lyme. On the other hand I was upset by the fact that cancer is taken seriously, while Lyme si not at all. I find it poignant how chronic Lyme is still not recognized as a real and serious disease.

I do understand that cancer is much more appealing to the imagination and is known as a deadly disease; however, the contrast in response is completely off balance. For a short while it did concern me that I seemed to fight an extra battle, next to my fight with Lyme and its co-infections. But fortunately one operation proved to be enough. All checks have been reassuring, so the chances of cancer returning are low now. 

Below each blog post you write 'Never Surrender'. Where do you get your strength from? 

I get my strength mostly from my own will to get better again. There is so much in life I still want to do and achieve. I am relatively young. Of course this journey is not only physically tough, but also a mental and emotional challenge. The support that I receive from my family and fellow Lyme sufferers is invaluable for me to keep the courage and strength to continue. 

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