Can you tell us how Lyme disease came into your life?
I have the particularity of having parents who are doctors and who retrained as foresters. We bought a forest in Maine-et-Loire. In the 80s, we were frequently bitten by ticks, but at that time, Lyme disease was extremely little known. And for those who knew about it, it was said at the time that the disease was not present in the west of France. So we were not suspicious. And we were not suspicious of the reaction I had at the age of 20; an erythema migrans. It is a red target that 50% of people who are bitten and contaminated develop. But I had ended up forgetting it. That is to say that in the 2000s, when doctors asked me, given my symptoms, if I had ever had an erythema migrans, I answered no.
How did the disease develop in you?
They were sciatica, atypical cruralgia. It became pain in the arm, then in the neck. Afterwards, I started having brain problems, I couldn’t think properly. I lost almost all my hair. There were eye problems, tachycardia, hyperacusis, unexplained anxiety attacks that made you throw yourself out the window… There are 70 symptoms listed for Lyme disease. I didn’t have the most common signs, namely pathological fatigue; I was tired but we put that down to the end of adolescence. Normally, we also have joint pain and swollen joints. But I didn’t have that.
Which means that the diagnosis was made late?
Yes, we waited until 2017. And I meet other patients who also had a very long journey before being diagnosed.
In the opinion of Western medical specialists, we cannot cure because the bacteria will encyst, will settle in the tissues and will be dormant. So we live with the bacteria, more or less well. I have been in remission for five years, with, from time to time, small resurgences of the disease. And great fears that there will be a relapse. But I believe that I have been living normally, or almost, for five years.
Why did you write “Lyme – If the sick knew, if the doctors could”?
I was raised with the idea that medicine was kind to a sick person. But I was astounded by this opposition that exists between doctors, in the way they view the disease. One group says that chronic disease exists; the other affirms that chronic disease does not exist and that three weeks of antibiotics are enough to stop the disease. And that if we complain of residual symptoms, it is psychological. This opposition puts Lyme patients, who suffer so much, between a rock and a hard place.
Practical
Marie Félix will present “Lyme – If the sick knew, if the doctors could”, published by Rue de Seine, on Saturday, October 12, at 4 p.m., at the Ravy bookstore in Quimper.
