Today is October 18, 2016.

In my previous blog post, I announced that I had been tested at professor De Meirleir’s clinic in Brussels. Yesterday I went to see him again for a stamina test and the final test results.

Although I have known for 15 years that I’m very sick, it was still a bit of a shock to my parents and me to hear that I had a rare case of chronic Lyme disease with a Tularemia co-infection.

chronic lyme diseaseFinal Diagnosis

Prof. De Meirleir has diagnosed me with:

He says that these bacterial infections date back from at least 10 years ago.

Also, according to the test results, the bacteria in my gut are disrupted. My liver is intoxicated and I’ve been suffering from brain inflammation for the past 15 years, both as a result of the bacterial infections in my gut.

The low cortisol levels that I have been experiencing for all those years are caused by the brain inflammation.

The professor’s literal words were: you have every reason to say that you’re sick. Many people have never believed me and some possibly still won’t believe me, but a diagnosis should make me feel relieved.

There is some controverse regarding Lyme Disease and before visiting the clinic, I told myself that I just can’t have chronic Lyme disease. I guess I was wrong…

For the critics, let me also point out that De Meirleir’s clinic is a non-profit organization. He works with a staff of over 5 people and only charges 75 euro for a consultation. I don’t really know what to believe, but I feel the chronic fatigue and muscle pain every day. The chronic Lyme disease diagnosis and the professor’s explanation seem very plausible.

The problem is that health insurances don’t acknowledge the existence of chronic Lyme disease (and other chronic illnesses like Fibromyalgia and ME/CFS) and refuse to pay a penny for the tests and treatments.

If the health insurance companies need to acknowledge chronic Lyme disease, it would cost them millions. So governments worldwide are doing everything they can to keep kicking us while we’re already down. Fortunately, times are changing thanks to about a dozen statesin the USA who have a law in place to support antibiotic treatments for chronic Lyme disease patients.

Now What?

The professor will me send a letter with instructions for the treatment. The first step is to kill the bacterial infections. I’ll have to be on a daily infusion with heavy antibiotics for the first 10 days. Then the usual procedure is to take probiotics to restore the intestinal flora, followed by another round of antibiotics and so on until I’m feeling better.

To be honest, I was emotionless yesterday. I know I should feel relieved that I finally have a diagnosis that makes sense. And although the treatment can cost up to 25 000 euro per year, some patients seem to get postive results.

I already adjusted my diet to deal with the fructose malabsorption and leaky gut syndrome 3 weeks ago. Professor De Meirleir says that these problems are caused by the bacterial infections, so we need to try and get rid of these infections first. When the clinic emailed me 3 weeks ago, I already knew that my symptions aren’t caused by just fructose malabsorption and a leaky gut, but I’ll obviously keep eating right during the treatment.

I’m waiting for the letter with the treatment plan now and would like to start the first round with antibiotics as soon as possible. I don’t know about the total costs yet and how I’m going to pay for it. There have only been 2 options during the past 15 years: I either try to recover or give up. Not much of a choice right?

chronic lyme diseasechronic lyme syndrome

The Prognosis

I’m not depressed and never have been, but I simply DO NOT want to “live” like this anymore. I want to give his treatment at least 6 months before making an evaluation.

Some patients recover a bit or even fully while a minority of De Meirleir’s patients claim not to have been helped at all. Because most patients have a long medical history, it’s basically impossible to make a prognosis.

The professor says that the longer you have been sick, the more difficult the treatment is. On the other hand, I’m still very strong. I was able to cycle 240 watts during the stamina test. To make a comparison: during the beginning of my illness (in 2002) I was able to reach 350 watts.

Dr. De Meirleir has treated almost 20,000 patients so far and is one of the most experienced doctors in the world. Every day there are people from all over Europe in his waiting room. I’ll put my trust in him for now, just like I did with all the other doctors (who all failed) in the past. The biggest difference is that he listened to me and believes me.