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.

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 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 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.