Long Covid and Fatigue: A Patient’s Experience Report

Why I am writing this report

Hello everyone,

I would like to share my experience with long Covid and chronic fatigue, because I know what a severe burden this illness is for those affected, and because conventional medicine cannot yet offer a generally accepted treatment for it. I am doing this to reach people who are still ill after Covid, who are desperate, who get no remotely satisfying answers from their doctors and who feel – understandably – completely overwhelmed by the complex medical picture.

After consulting a number of doctors, doing my own research and experimenting with different approaches, I am well again. I would therefore also ask others to share this report with people who are affected.

I. Symptoms

My long Covid story went as follows.

I had been vaccinated against Covid three times. I probably had the Omicron BA.2 variant, as it was widespread at the time of my infection in February 2022. My Covid symptoms were fairly average: fever, a flu-like feeling, weakness, coughing, a runny nose, a sore throat. This lasted about 8 to 10 days, for the duration of the infection.

One thing stood out: the fever rose rapidly at the beginning of the infection (to about 38.6 °C), fell after 2 to 3 days to 37.2–37.3 °C and stayed there.

After 6 or 7 days I felt better for the first time – and immediately experienced what is known in fatigue illness as post-exertional malaise (PEM). After mild to moderate exertion (marking exam papers, followed by a half-hour phone call), which I felt able to manage because I thought I was improving, I relapsed at once into a stronger flu-like feeling, and any hope of a quick recovery was gone for the time being.

After about 10 days I tested negative for the first time. I wanted to use the regained freedom to move around more, since the constant isolation was understandably very unpleasant. By then I was also suffering from more severe sleep problems, although at first I assumed this was purely a consequence of the psychological strain of isolation. But with every attempt at a normal walk I noticed – despite negative tests – acute relapses with a stronger feeling of illness and weakness. I also noticed that I had suddenly become very sensitive to noise.

Because I still wanted to resume my old life – I am a trainee lawyer – I attended a class again 14 days after the infection, with the test still clearly negative. Again I relapsed into a stronger flu-like feeling, as if I still had Covid. That frightened me a great deal.

So I accepted that I was not yet ready to take part in normal life and that I had to rest in bed – after all, I simply still felt ill.

The days that followed were very bad and frightening. Instead of improving, my condition – intolerance of light, noise and exertion – stayed the same; in fact everything got worse. The intolerance increased further, and another crash came from merely heating a ready meal in the microwave. This happened about 3 or 4 times in a row, once a day. Each of these crashes looked the same: an acute, strong feeling of illness (even though the virus was no longer in my body), dizziness, exhaustion and a psychological low. Afterwards I was regularly in tears, thinking: I am never going to get well, what is wrong with my body?

I kept testing myself and was consistently negative, which matches what the doctors I had consulted said – that after some time the virus is simply cleared by the immune system.

After every crash I reduced my activity further. About 18 days after the infection I spent the whole day in bed in the dark, because I could not tolerate any light or exertion at all. I was severely exhausted. My body temperature was constantly around 37.1 °C, which seemed very slightly raised compared with before.

I began to do research and came across the phenomenon of fatigue, chronic fatigue and long Covid for the first time.

II. Experiences with doctors

Since I could feel that something was seriously wrong, I immediately started looking for doctors who treat such conditions. My GP was completely at a loss, as was an acquaintance of hers who is a psychiatrist.

I saw several more GPs and specialists – neurologists, psychiatrists – but most of them could not help. A long Covid clinic that I visited after about 3 months was entirely clueless as well and offered nothing but superficial symptom relief. Only those doctors who actively and specifically concern themselves with long Covid and fatigue were able to help me.

Regarding the PEM symptoms – the crashes – I noticed the following. About 20 days after the infection I no longer felt any underlying sense of illness. There were still isolated episodes of overexertion afterwards. But these now showed up only as a cognitive collapse, with dizziness, and no longer as a return of the flu-like feeling.

Over the following period, 1 to 3 months after the infection, I realised that the damage was evidently in the brain. This became clearer to me as treatment progressed. My brain was no longer able to process noise, light or physical and cognitive effort properly. I had not been aware of this at first, because the flu-like feeling and the severe exhaustion were so dominant. When a stimulus was too strong for my brain, it responded with headaches, dizziness, brain fog or malaise.

III. Diagnosis

I will shorten my account here and keep to what mattered most to me. About 3 to 4 months after the infection, a comprehensive blood panel was done. It showed the following.

• Almost all blood values were normal, in particular those relating to energy metabolism, mitochondria and the like.
• The inflammatory markers, by contrast, stood out. CRP was normal, but interleukin 6 (IL-6) and TNF-alpha, two pro-inflammatory cytokines, were elevated. This is referred to as “silent inflammation”, evidently triggered by the Covid infection.
• After discussion with several doctors, it is to be assumed that the strong release of cytokines by my immune system damaged my central nervous system. This concerns above all the strong release during the Covid infection, but also in the period immediately afterwards – by which I mean mainly the crashes. After each of these episodes my brain was permanently less able to process stimuli. The immune system had therefore overreacted. At the same time, high levels of IL-6 and TNF-alpha cause drowsiness, which would explain the tiredness component of fatigue.

IV. Treatment

Treatment followed several tracks.

1. Treating the cause

The persistent inflammation had to be stopped. One doctor recommended turmeric as a mouth spray. Another recommended high-dose vitamin C in a slow-release form, so that it is released into the blood slowly and steadily and as little as possible is excreted in the urine. I used both continuously. I also took omega-3 fatty acids and selenium, as I have an autoimmune underactive thyroid anyway. After some time the blood values were measured again and had returned to normal. If these natural remedies had not been enough, stronger anti-inflammatory treatment would probably have been needed.

2. Treating the symptoms in the brain

I consulted Dr Seemann, who offered treatment with transcranial magnetic stimulation (TMS). He had also predicted from the outset that the inflammatory markers mentioned above were very probably elevated. TMS is a treatment approved for depression for around 30 years, in which nerve cells in the brain are stimulated with magnetic pulses. Unfortunately the procedure cost a fair amount of money, as it is mostly offered by private practices. But I noticed an immediate effect on the fatigue symptoms. The effect was truly enormous; it is strongly stimulating, and the exhaustion is completely blown away by it. The effect initially lasts all day, and the treatment should be done in the morning if possible, as you would not be able to sleep for the next few hours. I repeated the treatment several times a week, twice a week at the start. Over time I rented a home device developed by the doctor himself and was able to use it daily. Tiredness and exhaustion were a thing of the past within a few weeks. It took a long time, however, until my brain could cope with all everyday stimuli and exertion again, including sport. I was signed off work for 3 months. My symptoms improved week by week. After about 4 months I was fully active again and had only minor symptoms left. The method has no side effects, apart from a considerable disturbance of sleep if you use it within the last 9 hours before going to bed.

For the regeneration of the nerves in the brain I also took high-dose Keltican Forte, which contains compounds for nerve regeneration, plus a vitamin B complex. I also made sure to exercise every week, including strength training, although here I had to approach my limits carefully. Dr Seemann explained to me that exercise promotes the formation of new brain cells. I was also to keep mentally active, which I did regularly anyway because of my legal traineeship.

An absolute game changer, again on Dr Seemann’s recommendation, was the medicine Tianeurax (active substance: tianeptine), which has been shown to restore neuroplasticity in the brain (hippocampus). As the usual dose of 3 tablets a day (12.5 mg each) left me completely sleepless, I took only 1 tablet in the morning. As with magnetic stimulation, the medicine led to a strong activation of the brain – no exhaustion at all any more. It also helped very well against the symptoms in the brain, which was fully capable again. As an antidepressant, the medicine is available on prescription only. Given the low dose, however, I would say it had hardly any effect on my mood. I had no side effects.

3. Treating mood and sleep

Because of the severe isolation and inactivity I quickly became low in mood, and this tended to get worse throughout, despite the steady improvement in my symptoms. I also took a sleep-promoting antidepressant (mirtazapine 15 mg). It helped excellently against the sleep problems and complemented the stimulating treatments wonderfully, as it allowed me to sleep well at night. As a side effect I had a slightly increased appetite and gained a little weight. Coming off this medicine takes time. It, too, is available on prescription only. At my dose the effects on mood were not particularly strong.

Finally, it is worth noting that in my research I read that prolonged insomnia leads to high levels of interleukin 6, so sleep is essential for calming inflammatory processes.

V. Short summary

Diagnosis: chronic latent inflammation, damage to the central nervous system (brain).

Treatment:

• against the chronic inflammation (the cause of the illness): turmeric spray, slow-release vitamin C, selenium, omega-3 fatty acids
• against the symptoms in the brain: Tianeurax 12.5 mg per day (prescription only), transcranial magnetic stimulation, Keltican Forte, vitamin B complex, exercise
• against sleep problems: mirtazapine 15 mg (prescription only)

VI. Conclusion

After a long period of illness I have largely overcome my long Covid fatigue. The symptoms affected me in one form or another for up to 6 months. This is a serious disorder of the body that could only be treated in a complex way, on several tracks at once.

But the case is not hopeless. There are approaches that work; you have to do your own research, however, and may need to see several doctors. I had to spend a fair amount of money on this – several thousand euros in total – but looking back it was worth it.

Every long Covid case is presumably individual. In my case it was a fatigue whose cause lay exclusively in the brain. But there are apparently also many people with chronic fatigue whose energy metabolism is disturbed, as one doctor explained to me. Their case is different.

For the brain-related problems, the methods and medicines named helped me extremely well. If your case is similar, I can therefore strongly recommend having the corresponding blood values examined and, with the same symptoms, trying the aids mentioned. At the end of the day, in this barely researched field much of it is trial and error on your own body. In my view that step is worth taking, since with approved medicines and treatment methods you have little to lose and a great deal to gain – your old health.

I wish you all the best, and do not lose patience with your recovery.

Kind regards