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 11, 2015

Before I learned that I’ve been carrying the lyme bug for all these years, I didn’t have the slightest clue as to why I would be terribly ill one day, just to feel much better the day after.

Neither did I understand why I ran completely into the wall – like somebody had pressed “shutdown” – during heavy exercising. Nor why I felt so horrible the next day.

Two years ago, when I was still playing football (soccer) – or rather, excuse me, kicking football which would be the proper verb to use for harrowing around in the lowest soccer league – I could physically get through a whole game without any serious problems. The problems started a few hours after the game, and extended into the day after. Then I got sick, really sick.

Not at all like the delightful feeling that emerges when you know that you’ve been “benefitting from destruction” – when you push your body, breaking it down on purpose, in order to let it grow even stronger than before through recovery. The basic idea of constructive, long-term training, the reason for being awarded with satisfaction and well-being.

Not like that at all, but like sick when you’re starting to get the flu. The body works like crazy to survive, and leaves its host (in this particular case, me) to his/her own. That’s the way I felt – and still do feel – the day after a hard work-out. And I never understood why, not until I got diagnosed.

Chronic lyme disease causes a chronic inflammation in the body.

When we breath in oxygen at rest, the oxygen is absorbed by the hemoglobin in our lungs. But only 25% ever reach the cells – the rest is returned to the lungs, since the oxygen is so tightly bound to the hemoglobin.

During heavy exercise, our body temperature rises and the level of carbon dioxide in the muscles increases. As the carbon oxide level rises, the bind between oxygen and hemoglobin weakens. As a result, more oxygen is freed to reach the cells.

The Lyme bug can’t stand neither high temperature nor oxygen. Intense exercise indeed kills spirochetes, causing a release of endotoxins into the blood.

A lot of the toxics are pumped out of the body during the exercise, through sweating. But when the amount of endotoxins are larger than the body can get rid of in that natural way, the body shuts down and goes into its combat survival mode during the exercise.

And later – when the exercise is over – there’s still endotoxines to get rid of, but as we are no longer sweating them out, the body has to attack it like it attacks any hostile intruder – it starts to produce a large amount of cytokines, activating the white blood cells, preparing for a counter-attack.

That’s where all the energy goes, and since there’s already a chronic inflammation present in the body, there’s already too much of that kind of activity going on. Following upon heavy exercise, the body thus works much harder than what could be considered normal, all other body functions becoming second priority.

No wonder, then, that I’ve found myself completely wiped out the day after heavy exercising. The effort has triggered the same phenomena that occurs when medication and supplements hit the spirochete effectively – I’ve had a herxheimer reaction. I have certainly known that something is terribly wrong, but not the reason why.

So, can you get rid of lyme through exercise? Hardly. But it should logically be possible to actively diminish the amount of bacteria in the body through regular exercise. Such a pity then that heavy exercise makes you feel horrible for the next 24 hours or so.

But knowing this, I can start looking for the optimal balance – trash spirochetes to an amount tolerable to the body. A dead spirochete is a good spirochete. In that sense, my jogging session two days ago was close to perfect; I got away with only minor inconvenience, and managed to make life sour for my intruders.

This could also explain why my lyme disease got so much worse after I decided to stop exercising, although I did that only because all signs pointed in the direction of exercise worsening my problems. The little you know. You have to learn on-the-fly.

Helsinki, June 10, 2015

Yesterday I went jogging for 30 minutes, for the first time in almost a year! My pace was slow, but this wasn’t about speed. Neither is it the thought that counts, but the execution.

Yet another thing that comes across as highly illogical – how could anybody in my condition run? Go figure…

The jogging yesterday was a soft-start, I think I ran a little over two miles. There’s no chance on earth, though, that I could walk the same distance. That would result in a tightening pain and dizzyness, and I’d have to abort.

Well, I had pain and dizzyness yesterday, too, but that hit me when I walked to the grocery store after jogging. I wasn’t feeling too well later in the evening, either, but that was expected – overall, I’m happy and surprised that I did so well. No severe repercussions today, either – just a slight dizzyness and tinnitus. Just a trifle, really.

There’s something about monotone excercise and static positions that my body just can’t handle. Jogging flexes the muscles much more than walking, and uses upper body torque in a whole different way. Still being but a faint shadow of my former self, I seem to be able to pick up excercising again, which is great – I dont feel comfortable when I’m forced into a passive state.

And maybe, just maybe, the treatment might show some positive results already! There’s still a long way to go, but tiny progress is nevertheless a step in the right direction. During Spring I wouldn’t even have dared to try running, given the condition I was in back then. Fact is, even tying the laces of my running shoes would have resulted in physical inconvenience.

So right now I take great pleasure in this, and I look forward towards the day when I once again will be able to carry two grocery bags from the counter out to the car in the parking lot without having to spend the rest of my day laying down, loaded with medicine. Baby steps, baby steps.

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 8, 2015

Tomorrow, on Monday, another antibiotics is added to my medication. I will continue to recieve IV-antibiotics as well, every other day from now on. Now I enter the phase of which I’ve been most afraid. Now all the medicines are thrown into the mix.

When the spirochete (the spiral-shaped bacteria) dies in the body, it is through the destruction of its cell wall. Then endotoxins enter the blood stream, which the body experiences as an attack and treats like an inflammation. If the release of endotoxins is large-scaled enough, the human defense mechanism is overloaded. Then something called a Herxheimer reaction occurs. That’s when you start feel not better, but much worse than before.

The Herxheimer reaction (or herx, in daily speech) can be everything from almost neglible to something that makes the patient brutally ill. Some lyme patients produce almost no herx symptoms at all, others are feeling terribly sick. For natural reasons, I wish I belong to the first category, but I have mentally prepared myself for a rough week.

The lyme bacteria is a chameleon that can disguise itself through mimicking symptoms of other diseases, thus confusing the doctors and making it much harder for them to come up with the right diagnosis. When one listens to different patients’ history of disease, their initial symptoms can vary quite a lot.

Late stage symptoms is a different story. When the disease has harassed the body long enough, the common symptoms have appeared. It would all be som much easier if one could look 10 years into the future. Then proper treatment could be started at a stage where the bug simply hasn’t had enough time to cause so much devastating damage.

Now we are practically forced to look at it all in retro perspective, and a lot of people are indeed being misdiagnosed when their first symptoms occur. When my symptoms appeared, I didn’t give borrelia burgdorferi a single tought.

I ruled out my first symptoms as being caused by other factors. When I started taking antidepressants in fall 2000, I thought I would die – I went to the hospital emergency room several times due to irregular hearbeats and panic attacks. The EKG:s showed nothing out of the ordinary. SSRI antidepressants have a breaking-in period during which it is common that the patient feels worse during the first weeks or so.

I felt terrible for a period of six weeks, until it finally eased off. My wife saved me. She tirelessly sat by my side, ensuring me that I would make it, that I would cut through. I did, and came to the conclusion that my breaking-in period just was an unusually long and heavy one.

But the irregular heartbeats didn’t disappear. In my case, I had premature ventricular contractions (PVC) – for many periods as much as one PVC every tenth beat. As my pulse always has been slow, and I excercised a lot during that winter season (which lowered my pulse to about 36 beats per minute), the doctors explained that PVC:s are experienced more often in individuals with a slow heartbeat. I believed them, and carried on.

My next symptom was dizziness. This was explained to present itself due to neck tension, and I started to schedule regular appointments with naprapaths and physiotherapists. The treatments eased the symptoms, but only temporarily. At the transition into year 2001, there were as you can see many signs pointing towards an underlying problem, but neither I myself nor the doctors grasped that just yet.

Helsinki, June 5, 2015

I have been given intravenously distributed antibiotics for five days now, and are given a break during the weekend. The idea is that this first week lays the foundation for the rest of the treatment. On Monday, a second antibiotics is introduced, distributed orally. Meanwhile the IV-treatment continues as well, on every other day from now on.

This initial treatment period spans over eight weeks, carried out following the guidelines of ILADS (International Lyme And Associated Diseases Society.)

As a complement to the antibiotics, I take quite a lot of nutrition supplements. Some of them “pave the way”, give the antibiotics an opportunity to operate optimally. Some aid in detoxing the body. Others attack the borrelia bug in forms where it is hard to access. It’s an incredibly tricky bacteria. It knows how to guard itself against attacks.

When the bacteria feels threatened, it seeks shelter in something called a biofilm, which could be compared to the way an animal herd stick together in order to avoid becoming easy pray for predators. The biofilm has to be torn apart in order for the antibiotics to access the bacteria and destroy it, and nutrition supplements plays a major role in this mission.

When fearing for its life, the bacteria can also transform into a cyst form. Its destructive work in the body is then temporarily put on hold, but it can survive in sort of a “power-off”, lethargic mode, until the danger – the medication – has ended. Once the coast is clear, it emerges from its “shell” and continues its agenda of destroying the body. The cyst form, as well as the biofilm, can be counter-attacked by proper use of nuitrition supplements.

It’s warfare against a clever enemy. Treatment of late-stage lyme disease is a whole different matter compared to the few weeks of doxycycline treatment officially considered adequate in cases of acute lyme infections.

This is widely known by a significant part of the world expertise in the field. In Finland, as in many other countries, the tendency (a few brilliant exceptions aside) is to bury the head into the sand, murmuring heavily outdated mantras about how a simple blood sample and a lumbar puncture warrants an undisputed diagnosis, and how a subsequent uncomplicated, short-term antibiotics treatment can cure the disease.

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.

Helsinki, June 3, 2015

The IV medication continues on the third day of an eight week long span. My moments by the drip holder are almost meditative, and my thoughts naturally revolves around how I ended up here.

I’ve been bitten by ticks several times, which makes me unsure of when and where the lyme bug entered my body. Somewhat ironically, I guess it happened at a moment when I neither saw nor felt anything at all.

In the summer of 2000, we traveled to Åland (an archipelago of islands off the coast of Sweden in the Baltic Sea, forming an autonomous province of Finland.) The route back went through the beatiful chain of small islands connecting Åland to the archipelago of Turku. Back home in Jakobstad, my wife Ia suddenly got a rash on her skin – erythema migrans, the classic red “bulls-eye” so closely associated with lyme.

It is nowadays well known that less than half of the people infected by lyme develop a rash, and still fewer of them develop the characteristic “bulls-eye” rash. Thus what happened to Ia was kind of a blessing in disguise – her skin rash was distinct and clear-cut.

Neither one of us had actually seen a tick crawling on our skin, nor clinging on to our body – nothing. My uncle, who is a doctor, reacted swiftly and put her on a doxycycline treatment “just to be sure”. For this I’m immensely grateful today, as it probably saved her from the life-draining disease I’m fighting.

About two months after our return from Åland, my body had a major breakdown. My skin was on fire, I got severe pain in my back and neck, just moving my body around hurt, my head was buzzing like a beehive.

I got a doctor’s appointment, went there to describe my physical problems, and got back home with a prescription for antidepressants.

Now, there is a strain of depression running through my family, and I got to experience that way before the year of 2000. I went through seasonal depressions when summer approached, hitting its peak (or low, as one might say) during mid-summer, just to lighten up and subside at the break of fall. Only late summer and fall 2000, there was no subsiding, things only got worse.

Later I’ve come to believe that I got infected during the summer trip, the moment of transmission passing unnoticed. Then the physical reaction hit me some months later and in doing so, it turned my seasonal depression into a chronic one. Alternatively, I might have carried the bug latently in my body from a previous infection and then stress or depression might have triggered the outburst.

It’s hard to know for sure, but there is something about the timing – the trip to Åland, my wife getting bitten by a tick, the general occurrence of ticks carrying lyme in the region – that makes me inclined to lean towards the first of the two alternatives.

I have been on antidepressants since that fall, and they have helped me a lot. The few times I’ve laid off them have shown me their benefits. That said, this doctor’s visit was the first in a chain of many to come where I’ve been diagnosed with a mental problem expressing itself physically.

The wall between body and soul has always been a thin one for me. I’m quite familiar with my body reacting sympathetically to my emotions. Thus this first diagnose sounded perfectly sound to me – then.

When the physical deterioration gradually started to set in a bit later and new, unexplainable symptoms emerged, neither I myself nor the doctors connected them to any underlying, destructive factor. We just saw them as separate matters. More on this later.

Helsinki, June 1, 2015

In April, 2014 I had a serious conversation with myself.

Me myself, my son (19 yrs old at the time) and my father (70 years old at the time) had been traveling to Madrid to watch Real Madrid against Bayern München in the Champions League semi finals. The stands at Santiago Bernabeu are very steep, and we had to climb/walk upwards about 10 meters from the section entry gate to get to our seats.

My father and my son had to wait for me, just like in the arrivals hall at the airport the day before. No speeding pulse, no shortness of breath, just pain. Diffuse pain. Squeezing pain, like if my body was caught in a slowly tightening vise. Every body movement had to be executed against a growing resistance.

Following shortly thereafter, sure as fate, everything else. Tinnitus, dizziness, back spasms, nausea, chills. Not a single body position that would make my body feel ok.

In the conversation with myself, I told myself that this is not how it’s supposed to be. I’m 15 years older than I was in the year of 2000, but my body has collapsed in a way that just can’t be caused by normal agening.

Last Fall, all the pieces fell together. I have struggled – and continue to struggle – a most unequal fight against borrelia.

Today I received my first dosage of intravenous antibiotics at a clinic here in Helsinki. Quite a few of my friends are as of now taking off on vacations, traveling to warmer and sunnier areas of the world. I myself sit for at least three weeks in an old warehouse, watching the medicine drip slowly out of the IV drip bag, through the infusion needle, into my blood circulation system.

This is quite an expensive vacation, because Finland – like many other countries – doesn’t recognize the possibility that whatever harasses and systematically destroys my body prematurely would have anything to do with the helical, tick-borne bacteria Borrelia burgdorferi.

I, however, do. I’m angry of what I know now, and that I didn’t learn about it earlier. That said, I’m also gratefull that my piano player hands and my reflecting, thinking self are unafflicted. As of now. Without treatment, it would all just be a matter of time, and if I lose my hands and my brains I feel I would have nothing left.

Hence the fight starting today. I will write here for terapeutic reasons, for information, and for lifting this dreadful sickness up into the light. This is no report, neither do I claim to hold any information about universal thruth or proper action. This is just what it is.