April 2021. A few days after his AstraZeneca vaccination against COVID-19, Gerrit van de Ven starts experiencing severe symptoms. His legs and half of his face are paralyzed and he has a stabbing headache. His physiotherapist starts searching on the internet and comes up with Guillain-Barré syndrome, a rare muscle disease, and a possible connection with the vaccination. In retrospect, that turns out not to be such a crazy idea.
Still Guillain-Barré
The GP does not agree and thinks it is a TIA, which a neurologist then rules out. He initially suspects Lyme, but a blood test also shows that this is not the cause of the complaints. “Then follows a very hectic period with suspicions of MS, Alzheimer's and ALS in succession. Until a cerebrospinal fluid puncture finally provides clarity: it turns out that I have CIDP (chronic inflammatory demyelinating polyneuropathy, ed.). This is a condition of the motor and sensory nerves, which is closely related to Guillain-Barré. But then we are half a year further.”
Changing complaints
In the meantime, the complaints had fortunately diminished somewhat, says Gerrit: “After three months, my face had improved and I could hobble again. Cycling became easier for me, so I spent a lot of time on that. However, it still felt as if needles were being stuck in my head sometimes. During that period, I could hardly sleep. Later in the process, I continued to have problems with my hands and feet. Sometimes I had no feeling in them and sometimes that stabbing pain there too. There were days when my hands became so hot that I had to put them in cold water every half hour to ease the pain.”
Interruption
Gerrit is initially happy when he is referred to an expertise center for CIDP. “But I quickly came to the conclusion that I personally could not get any further with this type of care. And when I asked what I could do about it myself, I was met with a somewhat shrugged response. I did not want to accept that. Because I am also sometimes free of complaints, I cannot believe that those nerves are permanently damaged. I see it more as a kind of disruption in the contacts.”
Get rid of zombie feeling
As a computer scientist, Gerrit is used to searching and experiencing. He has now applied this attitude to his private situation. “How did my body get out of balance and how can I restore it? That’s how my physiotherapist referred me to an acupuncturist. I now go there every six weeks. The effect of these treatments varies greatly, but the last time I got goose bumps at one point. Suddenly the fog in my head was gone, that zombie feeling. I simply had my body back and that for a few days.”
Natural Supplements
Gerrit also went to an orthomolecular therapist, who prescribed him a number of natural supplements based on his story and complaints. “With a few remedies the effect was – in my case – quite spectacular. For example, I was given Arnica granules because there was constant mucus in my lungs. For two weeks I coughed up bright yellow mucus, but then my lungs really felt clean again. Another eye-opener was Lion's Mane, made from a Chinese mushroom. That was aimed at the growth of the myelin, or nerve conduction of my nervous system. After that, the feeling in my hands and feet improved greatly.”
lifestyle
Gerrit: “While searching, I was confirmed in the idea that the imbalance in my body can indeed be restored. Then I started looking at what I could do myself to get my body in the best possible condition. I stopped eating sugar completely and started intermittent fasting. In my case, that means not eating after six in the evening and the next day I first exercise and only eat something again during lunch. And that also works for me. I have more feeling in my limbs and more peace in my body.”
Fun fabrics
“Before I got sick I was very fit, moving a lot. I picked that up again. The pleasant substances that you generate do me good too. I will retire soon, then I will have more time to work on my condition and recovery. During the less good moments I still sometimes walk like a 'drunk monkey', but in general things are really going in the right direction now.” Gerrit's message is clear: according to him, the rigid focus on evidence-based interventions leaves opportunities untapped. “We are really lagging behind in that in the Netherlands.”
Hats off to C-support
Gerrit understands that C-support cannot take a position when it comes to solutions that are not scientifically proven. “But my aftercare advisor was open to my personal search for alternatives. She even put me in touch with someone with the same complaints to brainstorm and share experiences. Of course with mutual consent. Hats off also to the way C-support deals with feedback from patients. For example, the first questionnaire of the multi-year study barely addressed the effects of the vaccinations on the complaints. I responded to that at the time. From my profession I know that you only get the right insights by asking the right questions. Now I don't want to claim that it is because of me, but the second questionnaire was already better. So they really listen to us.”
This story is based on the personal experiences and perceptions of the patient in question. We at C-support like to share this because we know how patients can inspire each other and because professionals also can learn from those personal experiences. No advice from C-support can be derived from the content of this story.
