Jakobstad, July 23, 2015

I’m now in the eight and last week of my first treatment. I felt quite well at the end of last week, so I decided to go jogging this Monday.

It was one of the few days this summer that being outdoors actually felt like summer, and everything started well. After about 2 miles I hit the all too familiar lyme wall – that is, my upper body got stuck like in a vise, pain set in, I got dizzy… practically everything (except breathing) malfunctioned.

Faltering back home the remaining mile and a half, I recovered somewhat later during the day. Then, in the evening, sure as fate, the expected symptoms hit me – neurological problems, muscle and joint pain, chills, a feeling of inflammation all through my body. I got through it all with a lot of lemon juice and painkillers. The symptoms did ease off, but I was so exhausted that I fell asleep early – at least by my standards.

I slept for 14 hours in a row, totally knocked out, and woke at 5 pm. The day was cumbersome, the brain working at half speed, and then in the evening the chills returned. It is quite a special experience to dress up in fleece pants, wool sweater and socks, finding yourself shivering under a blanket during the warmest days of summer.

This was no coincidence. Week 8 bears a daunting resemblance to week 4, when I went through a similar experience. This brings up the discussion about lyme cycles.

It is well known through different patient reports that symptoms during persistent, long-lasting lyme disease reoccurs by regular intervals. There are different opinions on as to what might be the actual cause of these cycles.

Some says it’s due to the hard-to-catch bacteria regularly re-entering the blood stream in order to reproduce, and that during treatment with antibiotics and/or herbal protocols the spirochetes – the corkscrew-shaped, classic form of the bacteria – are effectively lysed (destroyed) in the blood stream.

When spirochetes die, endotoxins are released, and our body reacts by producing cytokines. As the lyme patient has a taxed immune to begin with, the arising inflammation is simply too much for the body to handle – the immune system is overloaded, which induces a herxheimer reaction.

Another theory – one which I’m personally inclined to embrace – is that the reason for these lyme cycles is to be found in the truly fascinating ability of the bacteria to trick our immune system by performing epitopic changes – that is, make variations in the part of the antigen that antibodies against borrelia binds to. If variations like these occur every 3rd to 6th week, our body interprets these changes as if it’s dealing with a new, acute inflammation, and reacts accordingly.

Epitopic variation sounds logical to me. I know that I’ve for many years, on a more or less regular basis, have had really horrible days with chills and sweating, being sure that a heavy flue was about to hit in – only to only a few days later find myself in much better shape.

Being unaware of the fact that I’ve been carrying lyme bacteria in my body, I haven’t given it much thought, just accepted it for whatever it is. Without ever knowing why, and subconsciously suppressing a growing apprehension that something is seriously wrong.

We are inclined to always hope for the best, and are thus easily fooled – even by ourselves. Cyclic, regularly reoccurring inflammatory symptoms are rather common in lyme disease. If you have these kinds of symptoms without a plausible explanation or diagnosis, it might be better to think twice. Lyme disease might be the underlying reason.

Jakobstad, June 27, 2015

To continue the football (= soccer) analogy I started at the end of my former post, now there is something of a midfield battle going on, with neither me nor my opponent finding any opening passes. 0-0, thus, but I feel like time is on my side here.

If I ever had the slightest doubt that what I feel in my body during the treatment really could be due to a herxheimer reaction, that doubt is gone now. My up-to-then worst day (two days ago) was followed by an even worse day (yesterday). My whole body was in an inflammatory state, and suddenly I had huge neurological problems in the right part of my body – wandering pain, sudden numbness and “electric shocks” down through my leg as well as up behind my ear. It was simply fascinating – even if that word usually is used in more positive contexts.

A rational explanation to what I experienced could surely be hurriedly suggested. The reason would then be that I had subconsciously compensated for my left-side problems the day before yesterday – strained my right side in order “to help” – resulting in yesterday’s problems.

I can immediately calm down possible know-it-alls by reporting that I’ve overcompensated in the suggested way many times in life, but never ever have I experienced something similar to what I did yesterday. It was simply a neurological chaos taking place particularly in one side of the body, in a way that just can’t be explained as a result of strain. Believe me – I conduct an empirical research in my own body.

Counter-attacking, I drew upon every form of detox and medication I could possibly think of, and by evening it all started to ease out. I still feel a bit sick, but it’s getting better all the time.

Since I couldn’t do much more than ride it all out, I took the opportunity to follow up on the SSRI phenomenon I wrote about earlier. I had grown successively more curious, since so many struck by lyme disease had contacted me reporting similar experiences – in short 1) acute illness, 2) the diagnosis depression, 3) prescribed SSRIs, 4) a severe worsening of the illness during the so called break-in period.

A day of couch-conducted research, it was, and I found something highly interesting.

It has earlier been assumed that depression is due to an insufficient amount of signal substance in the brain, and that SSRIs – limiting the reabsorption of serotonine into the presynaptic cells – show good results since the use of these medicines results in an increased amount of signal substance.

More and more, researchers have started questioning whether this is the whole truth. The hypothesis that depression could be caused by inflammation of the brain has been brought forward, and that SSRIs might have effect due to anti-inflammatory properties.

The first research paper regarding this idea was presented a little over three years ago. The results suggest that the hypotesis might be true – results in test tubes (in vitro, lat., literally “in glass”) show that SSRIs at a dosage equivalent to the dosage usually prescribed by doctors seem to have a significant anti-inflammatory effect.
(The abstract at the link above shows a rough brush picture, the full report I read lies behind login and needs to be access either by user account credits or by payment.)

What I – as well as the research team – found even more fascinating was that lower doses had a contrary effect – that is, they promoted inflammation. It doesn’t stop here: the lower doses triggered the microglial cells – the most important part of the immune defense regarding the central nervous system – into starting producing… that’s right, cytokines.

A person struck by lyme disease has far to much cytokines to start with – the body is kind of in a constant inflammatory state. SSRIs have a break-in period, it can take up to many weeks before the accumulation of the active ingredient is large enough in the body to be able to produce the desired anti-inflammatory effect. Up until then, the SSRIs – according to the research in question – just makes the lyme disease symptoms worse.

Not only, then, is lyme disease so often misdiagnosed, but the medication commonly prescribed makes it all even worse. This is another strong reason as to why the lyme disease awareness amongst doctors has to be increased.

IC49, June 25, 2015

I’m currently sitting on the train once more – IC49 just passed through Riihimäki in Southern Finland. I traveled to Helsinki on Tuesday, and got my IV-antibiotics and a Vitamin B drip yesterday, at the clinic.

Since I have felt successively better I brought my jogging gear with me, aiming for an evening run yesterday. That didn’t happen.

Yesterday I had my worst day so far during the antibiotics treatment started on June 1st. Simply put, I experienced all my familiar symptoms times 1.5. A few short walks to and from the buses were enough to trigger severe pain and the furiously uncomfortable cramp hitting the left side of my body.

Add to this cramping under the left sole, dizziness, tremors, nausea, extrasystolic heartbeats, an intestinal pinball game. Buzzing – like small electric currents – through the thighs, calves, into the toes.

Enter a max amount of painkillers – even if it just dulls, not makes the symptoms go away. Some zopiclone addressing the neurologic mess somewhat. Follows a passive evening, felling sick, sweating, drinking a lot of lemon water, riding the misery out.

I want to – I will – believe that I have a reaction against endotoxins, the result of a spirochete slaughtering taking place. The 4th week of treatment is an infamous one, without anybody knowing exactly why. Maybe the antibiotics make their mark. Maybe the borrelia bug reproduces. Who knows.

The exact reason as to why is of minor importance to me. I fight through the attacks and choose to believe they are a sign of something good happening within.

And I certainly won’t give in. The best defense is a good offense, regarding both lyme and football (soccer). Tonight I will go supporting our local pride FF Jaro in the six-point game against KTP – an opponent that Jaro should be able to – and really need to – leave trailing behind in the league table.

I hope for an attacking approach at the Centralplan (“Central pitch”) as well. The fight continues.