Helsinki, July 6, 2015

One of the many difficult things regarding lyme is that so little of the disease is revealed to the outside world. Of course, there are also clear physical symptoms – from the classic “bulls-eye rash” (erythema migrans) to Bell’s palsy, swollen joints, wheelchair-boundedness. Still, most of the problems caused by lyme are hidden to everybody except the carrier.

The exterior of the body might be mainly intact even though the inside is in a state of total chaos. That is also confirmed by the many friends and acquaintances contacting me since I started to blog about my fight against the disease, expressing astonishment and dismay over how bad a shape I’m in.

Very few want to be sick. Very few tell even themselves how bad it really is. It must be due to some kind of survival instinct. Although you know something is terribly wrong, that there’s no way it can only be about psychosomatic symptoms, still you hesitate to lay the cards on the table.

Partly, this might be out of fear for the definitive. Still, I’m pretty sure that the biggest reason why you sit in the front row, watching your own body decline, is due to resigning to the fact that nobody seems to understand you.

When one has met enough people in healthcare examining you through a downpipe (thanks Mats Lindström for that apt description), you arrive at a point where it all becomes too much. Then you stop expressing what’s happening inside – to others, as well as to yourself. You join the descent, paralyzed.

Instead, you bite the bullet, and do your best. Writing it off as age-related problems, as lack of motivation, becoming an expert in tackling the problems of everyday life in innovative ways. Leaving the bicycle for the car, sleeping a lot, letting meetings away from home become a three-day project of which two days are all about traveling in a way that your body can handle.

So little is seen on the surface, but still there are clear signs for people close to you. The walking strides getting shorter, slowing down, you becoming silent when the pain hits. Detaching, keeping to yourself, when all your focus is on not fainting, or riding out chills that suddenly have appeared out of nowhere.

I have become really good at masking my physical problems – as good, in fact, that I now need people around me in order to notice the positive trend. I do become better, you see, but have a hard time grasping it after all these years of dodging.

My wife is amazed by me walking brisker and for a longer time that she has seen me do in years. My hairdresser made a surprised remark that she didn’t have to straighten me up once a minute – a result of me not leaning to the right anymore in an attempt to relieve my body, in order to avoid cramping.

Something is happening. Right now I have five of eight treatment weeks behind me, and the counter-attack – antibiotics, a change of diet, strengthening my immune system – starts to have an impact. When in doubt, I can simply check my painkiller pillboxes – the pills do not vanish quite as quickly as before.

The bearing is right. It’s still mostly baby steps, and set-back days occur without any logical explanation, but still.

I barely dare to write this, as the disease so many times before in such a profoundly cynical manner has crushed the few moments of joy along the way. But now I have faith – I believe that a change for the better is happening. Indeed, I don’t even have to move mountains, fighting off a particularly nasty bug is well enough.

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.

Helsinki, June 15, 2015

When I little by little crawled up out of the pitch-black darkness I found myself in during the first two months on SSRI medication (sertraline), fall was already changing into winter. Then, ironically enough (seen in hindsight), I entered a period of tough physical exercising.

Together with a friend of mine, I had spontaneously shaken hands agreeing upon participating in Vasaloppet in March, 2001. (‘Vasaloppet’ is a 55-mile cross-country ski marathon taking place on the first Sunday of March each year, with up to 15.000 participants.) Stubborn by nature I gave it all i had, despite the fact that my cross-country skiing experience the year before had been my first in 15 years.

It was an odd half year. My father became acutely ill with a life-threatening disease (from which, thank God, he recovered) in January, 2001, and I remember the car ride to Tampere University Hospital. In addition to all the thoughts circling around in my head, the surroundings were spinning, too. My positional vertigo was quite severe already at that time, even if it was nothing as troublesome as it would become through the years.

The training for Vasaloppet went surprisingly well, given that I had lyme spirochetes in my body. My guess is that the bacteria still hadn’t had the time to drill into ligaments, joints, organs and the bone structure, and that my exercising raised the oxygen level in the blood and raised my body temperature, resulting in the bacteria dying, reproducing, dying, reproducing – that there was a battle of dominion of my body, without me myself knowing it.

My heart rate went down to around 35 beats per minute during this period, and the skipped heartbeats were very mentally exhausting. Still, I could cope with them better than my next symptom – spasms and cramps during body rest.

Most of us have at some occasion felt a reflex, an uncontrolled body movement – a sudden leg kick is very common – falling asleep. The reason for this phenomenon is not fully understood, but is assumed to be a result of our brains not giving up complete control over the muscles at the moment when the muscles starts to become paralyzed (the state they should be in during sleep). The brain still kicks in – gives commands – a bit into the transition phase.

I’d had these so called hypnic jerks earlier in life, but now they became violent and different. It wasn’t just leg twitches anymore. Sometimes it felt like an electric shock throughout my body, other times like a hard blow to my head. In both cases, immediate tinnitus set in.

Worse than that was still when my whole body cramped slowly and persistently. It felt (and still feels) the way a cramp under the sole does, but in the whole body – with the torso being “the center of the sole”. A terrifying feeling, as if the torso was a vacuum pulling the rest of the body in.

“The solution” was to start taking sleeping pills; Imovane (with the active ingredient zopiclone) so that I could pass through the REM-phase quickly, entering deeper sleep. I have used sleeping pills practically every night since then. It’s also a waste of time and effort for me to try taking power naps during daytime, since that time consists almost entirely of cramps and results in me feeling more exhausted, not refreshed.

Later on, I started to get those cramps when I was awake as well, when I’d been sitting too long passively in a static position. I still have them as of today. Zopiclone hardly even make me yawn anymore, as a sleeping pill it’s quite useless for me – my tolerance is too high.

On the other hand, this medicine is actually the only one I’ve found that eases the cramps I experience when I’m awake, so I still use it almost daily. To my knowledge, there’s no research explaining why this particular medicine eases the cramps, but it probably has to do with its sedative effects upon the central nervous system.

Heavy cramps during rest is a common symptom of untreated Lyme disease, I just didn’t know that back then.

Helsinki, June 14, 2015

Even if I aim for the future, I’d still like to look back for a while. It helps me process everything that’s been happening in the past, and at the same time it paints a picture of how a single person’s life can be infected by lyme.

When my acute symptoms surfaced in Fall 2000 (of which I wrote earlier), I was prescribed antidepressants by my doctor. It was an SSRI-type medicine, with the active ingredient being sertraline. SSRIs are well known to have a break-in period during which the symptoms are not eased, but accentuated. It’s common to talk about 2-3 weeks being needed to turn the negative trend around.

My break-in period was nothing like 2-3 weeks, it was almost two months long. It was one of the worst experiences in my life. Harsh anxiety attacks that several times brought me to the emergency room at the local hospital. I thought my life was in danger. In the ER, EKG and enzyme tests were taken, to check heart rate irregularities and possible traces of a heart attack. Nothing was found.

In addition to the anxiety attacks I had severe arrhythmia, skipped beats. I’ve always had a slow heart rate (about 45 beats per minute, falling to under 40 bpm when my ability of absorbing oxygen increases through exercise). “Skipped heartbeats“, or ventricular extrasystoles, are somewhat simplified two heartbeats too close to each other, resulting in a prolonged time until the thereupon following heartbeat occurs.

At a heart rate of 45 bpm, the heart beats every 1 1/3 second. When two beats are triggered close to each other, there will be up to 2.5 seconds before the next heartbeat takes place. A lot goes through the mind in 2.5 seconds – it is an enormously long time to wait.

Furthermore, my head was completely loaded – that’s the best way I can come up with to describe it. As if the brain was a beehive, a head completely occupied with itself. All external impulses – somebody speaking, music playing, sudden sounds, bright sunlight – were too much. I couldn’t take in anything at all, as if the brain was a vessel filled to the rim with water and every drip that fell into the vessel just spilled over the sides.

And tremors, dizziness, sweating, a neck that didn’t seem to have the strength to carry the head up. It was two very long months. The single thing pulling me through was my wife Ia never taking my condition lightly, and still managing to anchor me in a pitch-black, stormy everyday life.

One can probably have reactions against SSRIs like the ones I described here. Lately, I have nevertheless started to ponder what I went through. I know many who uses these medicines. Several have no break-in periods worth mentioning, others go down into a valley before the journey upwards starts. None of these friends and acquaintances seem to have been in quite the condition I experienced only due to SSRIs.

I have thought this medicine to be particularly taxing particularly for me, and that I have a thin wall between my body and my soul. At the same time, these symptoms match the physical and mental collapse that many struck by lyme experience at the outburst of the disease. Maybe it isn’t a question of one or the other, maybe it was both. Now, in retro-perspective, I believe that lyme was at least a part of the physical and mental chaos I went through.

Helsinki, June 9, 2015

Today I have a day off from the clinic. From now on I get the IV-antibiotics every second day, and take care of the other medication by myself.

As often tends to happen when I have an unscheduled day, I woke early – at least by my standards. Due to lyme, I have mixed feelings about mornings. On one hand, the joy of waking up without pain. On the other hand, the moody anticipation of the pain that will hit me once I get up.

It is so easy to fool oneself, hope for the best. During the last years I ‘ve made a routine out of staying in bed – checking my emails, messages, news aso. on my cell phone. I’ve told myself as well as my wife that it’s a soft and easy way of starting the day, avoiding the nuisance of having to deal with such practical matters when I open my work computer.

That holds true, but that’s not the reason behind my morning routine. The very first thing I do in the morning is that I’m reaching for my pain killers. After that, I wait. Wait for the medicine to kick in. I bide my time trying to do meaningful things, hence the horizontal start.

The pain killers don’t ease the pain as much as I would like, but they soften the peaks a bit. Off medication, I have a tendency to compensate too much, use different muscles when the pain sets in. That strains those muscles, and thus a vicious cycle is created.

Wandering pain is a phenomenon that many lyme disease patients are only too familiar with, including me. My biggest problems are normally found in my upper body, particularly on the left side of the neck, upper back, and chest. This doesn’t mean, however, that I only have pain in that region.

It’s more the rule than the exception that after a day with pain in those areas, I have no symptoms right there. Instead, the pain has moved somewhere else – to the right side, mirroring the former pain, or to the lower back, or down to the soles of my feet. It is as if there is no logic at all, and there is none – if you only take joints, muscles and ligaments into the equation.

But at some stage, you realize that the nervous system is the culprit, and that it certainly isn’t just about “a nerve that has got stuck” (I can’t even count the times I’ve been given that diagnosis… just as if one, gigantic nerve runs all through the body, causing problems in different areas.)

Then it all suddenly makes perfect sense. That also explains the strange chain reaction that occurs sometimes (pain -> nausea -> tinnitus -> extra heartbeats -> bloated stomach -> spasming colon -> dizziness -> fainting), seemingly out of nowhere.

The nervous system is running amok. Sometimes it feels like being a puppet in a puppet theatre, with a devilish puppeteer pulling the strings just to hassle you. That is certainly not far from the truth, either – the spiral-shaped bug drills into joints, organs, even into bone, and takes command.

It has to be driven away by force. The fight continues.

Helsinki, June 4, 2015

The most treacherous part might be the slow pace at which it all changed. Prior to my lyme infection, I was an active person. I was fly-fishing, practiced aikido, played football (soccer), went running, wore the roads with my rollerblades and nordic ski sticks, traveled a lot, did handyman work, lifted things and gave a helping hand when needed.

As of now, fifteen years past that summer of 2000, I’m 45 years old. On a good day i can climb the stairs one floor. During bad days, I have to rely on lifts and escalators.

I can’t carry anything heavier than about four pounds for a longer distance without getting problems. Neither can I pull a suitcase any more than fifty yards.

I struggle most with static positions and monotonous movements. I just can’t sit in the same position for any longer than a few minutes, and that’s why I frequently change my body position whenever possible. That possibility is not always there.

If I drive my car more than sixty miles, I will be in severe pain the following day. If I drive really long distances, my body aches at the moment I step out of the car. To be squeezed into a tiny passenger seat on an plane is even worse, then every single step taken in the arrivals hall is one of agony.

I can’t walk for long before the pain in my neck, back and chest becomes unbearable. On a good day, maybe half a mile. On a bad day, a few hundred yards.

I don’t get a shortness of breath, but body spasms – much like a cramp under the foot, but a gigantic, diffuse one. The upper body pain is the worst, together with the whole left side of the body – from my head down to my toes.

Shortly after the spasms and related pain set in I get hit by sudden tinnitus, dizziness, and pinball-game guts. Later, if I can’t break the pattern, I get nausea and vertigo – the world around me starts to spin, faster and faster. Then, if I can’t lie down fast enough, I pass out and fall to the ground. This happens a few times each year.

I just stood in the kitchen, doing the dishes in the apartment I rent during my stay here in Helsinki. The plate rack was located just above shoulder height. When I had lifted five plates and five glasses up onto the rack, I had to sit down.

Neurologists I have consulted diagnose me with polyneuropathy. I call this late stage, active, chronic lyme disease.