My story, like those of all the Lymies, is long, and not necessarily interesting. I therefore decided to keep only the highlights, such that the reader, regardless of his state of health, can get an idea of what it really looks like becoming sick: the journey of fear and despair, with, in the background, the dream, each day duller, of a return to normality; the heavy, draining fatigue, hampering any semblance of will; the latent, often unacknowledged incomprehension, by oneself and by others, of the person one is forced to be ; the pain, the sadness, the resentment, the anger, the hatred towards the world and towards oneself, towards those who have not helped, and those who have made mistakes in doing so, towards the desire to help of the healthy people who dare to cry over our pain and theirs, when everything smiles at them, since the world has not punished them.
But also... The diaphanous beauty of what really counts and no one sees any more; the rediscovery of the self, through the prism of humility; the renewal of strength and energy, the thirst for life, the hope of healing, the love of those who have always been there and the bland vanity of resentment.
Until April 2013, I was a normal person. Student in engineering school, full of projects, careless, and happy. From the top of my twenty years, I was seeing the world under the eye of the one who had never suffered: a field of opportunities, of which I knew the dangers, but of which I also knew that they were not destined for me.
I worked, wrote, went out, lived ephemeral loves and dreamed of everything possible for my future. I wouldn't go so far as to say that life was a long quiet river, since I also had problems at the time. But these problems were problems like anybody have. However, I think it was the accumulation of these problems that formed a welcoming cocoon for my illness. I won't go into the details, but I wasn't (at all) satisfied with my studies, which I found boring, nor could I see enough of the people who would have stimulated me elsewhere.
During that famous month of April 2013, I did a 20km race. Nothing exceptional, but I wanted to prove to myself that I was capable of ranking myself well, and I had taken the challenge pretty seriously. I finished the race exhausted, dehydrated, and proud. A hostess of the event kindly offered me a Red-Bull as a reward, which I accepted with joy. With the combined effect of fatigue and caffeine, my vision began to get blurred and I suffered an awful migraine soon after. I didn't know that the greatest misfortune of my life had just been unleashed.
The two weeks following this event were nothing special, except that my migraines began to multiply. Then, on a beautiful May day, while I was drinking a beer with some friends on a terrace in Aix-en-Provence, an unpleasant sensation of glare appeared in my right eye. I ignored it, but it went on for several days, alternating with very unpleasant headaches. I went to see various doctors (general practitioner, ophthalmologist, orthoptist), convinced that my problem was common, but they all assured me that everything was going perfectly well with me. Yet my vision was beginning to turn yellow on the right side, and I felt more and more tired. I continued the tests, seeing more and more doctors, with the same answer: "you're fine, it will pass, go home". Fearing that I might have something serious, my parents even suggested that I get an MRI, which also turned out to be negative.
The months that followed were extremely stressful: my condition was not getting better, I felt so bad that I was almost unable to eat, and absolutely no one could tell me what I had. Intolerances to alcohol, perfume, gel, fish appeared, even though these things had never affected me before.
During the summer, my symptoms seemed to ease a little, and for the first time I was screened for Lyme disease, on my mother's intuition. An ELISA test came back positive (barely), and I was put on doxycycline for a month until I had the results of the Western-Blot, which was supposed to confirm the diagnosis. I was deeply shaken by this low-dose treatment. I couldn't eat, and I had terrible nausea. But, at the same time, I noticed that my condition tended to improve slightly.
The day after finishing the treatment, in a miraculous way, I was feeling almost healed: endowed with a considerable hunger, full of energy. But my visual symptoms were still there... At the same time, I had learned a lot about Lyme disease, and I knew that I had just experienced my first Herxheimer's reactions, that the antibiotics had also been very effective, but that the treatment had to be prolonged until the symptoms disappeared completely. I had also understood where and when I had been bitten by a tick: about five years earlier, in the Austrian Alps. A persistent red spot had formed on my neck at that time and had never left. Problem: the Western-Blot had meanwhile returned negative.
"You're fine, go home".
We are now in October 2013. I know perfectly well the cause of my illness and I know how to deal with it. Problem: These (almost) six months without treatment have allowed my symptoms to progress. I now have a slight pain in my left knee, and my neck has become painful on my right side. The stain on my neck, which had never changed in five years, has now grown a lot, and even spreads over part of my cheek. I continue to multiply the appointments, giving all the elements to the doctors to enable them to judge the diagnosis without them taking me for a new enlightened person affected by an imaginary Lyme (since I learned, at this time, that there were obviously many of them). I was sure that I would eventually be proved right, since I was right. But no. Consultation after consultation, I was always thrown the same transparent diagnosis, with doctors almost believing they were helping. Then, because of my insistence, they began to tell me that everything was in my head. How could I feel neck or knee pain, or even fatigue, since I am a young man at the top of my age, and I have nothing? Therefore, it must be in my head. Pseudo luminaries, ignominious figures, addressed my problems with an unspeakable contempt, even though their incompetence was just like their vanity: gaping, hollow and bottomless. I was charged literally 120€ for 20 minutes of consultation, and a non-diagnosis in return. Welcome to the world of medicine in the 21st century.
Finally, exhausted, starting to question my own madness, while my entourage did the same (if the most renowned doctors said he had nothing, well...), we decided with my parents to try doing a lumbar puncture (LP). It is probably the worst choice of my life, the one that dug a burning and bitter wound in me, consecrating the months of despair that had preceded. My parents were abroad at the time, so I went to the hospital alone. I was pierced with a needle between the vertebrae of my back, to recover the deep substance of my person, the CSF. What we didn't know at the time was that the LP is not reliable for diagnosing chronic Lyme. But this was useful anyway to eliminate more serious causes... What I was not told is that the consequences of the examination may themselves be far from moderate. The literature clearly shows that thin people are more likely to experience post-lumbar puncture syndrome. But the patient will not die, and at least he will be reassured.
The day after the operation, I got terrible migraines as soon as I got up or even stood up straight. A second arrow in the back. I inquired and quickly found the cause of my illness (post-LP syndrome); an illness for which the literature says that a few percents of patients take several months to fully recover. Could bad luck go that far? After 10 days of uninterrupted suffering, my parents took me to the hospital (a different facility than the one where I had done the LP. Indeed, I had to do the LP in an establishment located quite far, since the doctor in charge of my case in the local hospital had assured me that I had nothing...). I was suffering terribly for more than an hour in the waiting room, then the same thing in a hallway, surrounded by people screaming, crying, coughing, breathing in masks and still coughing, close from being dead. Finally, an unbearable doctor came to pick me without the slightest smile, to accuse me of having done the LP "in her back, against the recommendations of Dr. X, who had explained to me that I had nothing. We can do nothing for you, the pain will go away on its own". Just as if the pain wasn't deserved. Moreover, blood-patch is a well-known solution to post-LP syndrome. But she didn't care. I left with a terrible headache, without having gained anything more than another trauma.
We finally did the blood-patch in the same hospital where I had done the LP. The principle is to take blood from the arm and inject it back into the back. The operation must be done very quickly so that the blood does not have time to clot. It therefore happened in the emergency room. Under stress, while a nurse was taking my blood, I saw red jets squirting from my arm, watering the ground, before she applied a compress and the doctor stung my back. The operation was a partial failure. But a week later, the symptoms of the post-LP syndrome finally began to disappear. With them, all the confidence I still had in life and in the medical world.
The following months were poor in meaning. I was still suffering from Lyme symptoms, and I felt condemned that no one would ever believe me (although my loved ones never resolved to say it clearly, probably for the best). But I knew that without treatment, my condition would worsen, that I would end up suffering from cognitive symptoms and add myself to the list of Lymies interned in psychiatric hospitals for early dementia.
In March 2014, almost a year after falling ill, I did what I probably should have started with. I contacted a Lyme patients association, France Lyme, which referred me to a specialist. I saw him about ten days later. That doctor was the first to take my symptoms seriously. After listening to my story, he apologized on behalf of the medical profession and told me that the way I had been treated was shameful, but unfortunately not very rare. In front of his compassion, his recognition of my illness and my pain, I broke down. All the times I had been denied my reason, knowledge of my symptoms and my body, and even my dignity; all these times resurfaced from the walls of my soul in the form of a flood of black tears.
I was put on rocephin IV right away. The first herxes were very impressive. My heart was beating so fast after the perfusions that I feared it would eventually stop. But these reactions disappeared after a few days, and my condition began to improve. Unfortunately, the disease had already progressed a lot at that time, and treatment was not sufficient. I did another cure a few weeks later, which had a lesser effect; confirming what I feared: the disease had become deeply chronic, and it was not going to be easy for me to get rid of it. I was better, however, and as I could no longer condemn all social life in the name of my illness, I decided to apply for an Erasmus exchange in Sweden. It was a bad decision. During my journey, I stopped all allopathic treatment for 6 months (continuing with phytotherapy, but it was clearly not enough), and I think my condition got worse again during that period.
Back in France, in January 2015, I had to travel as part of my studies, and I changed specialist. I then tried other antibiotic treatments, and my condition continued to improve, but much less rapidly than before. However, I regained the ability to do sport with acceptable performance, and herx reactions were much more minor than before. But I always felt tired frequently, I had extremely unpleasant pains in my neck, and I was always intolerant to alcohol and perfume. I continued intermittently the antibiotic and phytotherapeutic treatments during approximately 1.5 years, with more and more mixed successes. My overall condition had become almost normal (even though I had less energy than a normal person), but the joint symptoms were progressing, and the neck pain was giving me a severe headache, regularly preventing me from working. At the same time, light paresthesias had begun to appear more and more regularly in the arms and legs. Having tried a wide range of antibiotics, my specialist didn't know what to do anymore, and let me kindly understand that I would probably have to live with it all my life. But I did not feel healed, and it deeply saddened me to project my future in struggle with my pains, for the rest of my days.
In the summer of 2016, shortly before starting my doctoral thesis, the left part of my neck, hitherto spared by the bacteria attacks, also fell. It depressed me deeply to realize that my condition could still get worse, and this depression, combined with the stress of starting a new life as part of my thesis, made me relapse. I took antibiotics again, and I found a semblance of form. A few weeks later, I moved, extremely uncomfortable, to start my PhD thesis.
The curing ?
When I arrived at my new school, I decided to take advantage of the presence of a sauna to use the heat sensitivity of the borrelia to my advantage. The effects of the sauna were fantastic. Under the effect of the heat, my neck got unblocked, and I suffered the first nights of rather powerful herxs. Soon after, as the sauna effect began to wear off, I was discussing of Lyme on the internet with an old American Lymie. He advised me to try a little-known treatment: teasel roots, in very high doses. I ordered a few bottles, and started treatment a few days later. The effect was devastating for the borrelia, and extremely beneficial for my neck. Armed with this and the sauna, I eliminated most of the joint pain. In parallel, I got rid of the paresthesias. But I couldn't get rid of the inflammation in my neck completely.
My (new) specialist then prescribed an intramuscular rocephin treatment. It was extremely unpleasant, but I rarely felt as fit as after this treatment, which I mixed with intense sauna sessions to improve the penetrating power of the antibiotic. I can say, with little doubt, that I regained my normal, pre-illness form at that time. The problem is that it didn't last long. A few weeks later, despite all my efforts (teasel, sauna), I returned to an acceptable form, but not perfect, and a bearable neck pain, but not non-existent.
That's when I discovered Reiki. My mother, concerned about my condition, forced me to initiate myself, and she probably did very well. With a scientific background, I had always been rather sceptical about alternative medicines. Reiki, through mysterious mechanisms, has however made me much less permeable to depressive states, fatigue, and allows me to unblock my neck and/or calm inflammation when necessary.
And here I am writing today, while I feel fit enough to run a half marathon (at least most days). I think that if I try another rocephine treatment, mixed with intense sauna sessions, my condition could improve even more. Anyway, I still have a lot of options to try. The road is probably still long, but it has become largely bearable.