Jakobstad, July 16, 2015

It’s has been some time since I’ve posted here, but I haven’t been idle. Besides continuing my treatment plan, I’ve done quite a bit of research in order to increase my understanding of Lyme disease. Self-education is almost mandatory, as most of the knowledge blazed by the conventional medicine is so amazingly biased and, in my opinion, largely consists of pure propaganda. More on this in a dedicated blog post later.

I’ve now entered week seven of eight in my initial treatment of lyme disease. I write initial, as I’ve prepared for a lengthy fight.

I chose an intense treatment – a counter-attack, if you might – the so called augsburg protocol. In short, the protocol is about the favorable interplay of several different antibiotics, nutritional supplements, a change of diet, physical exercise, and detox. The main idea is to attack the bacteria, to flush waste products out of the body, and to re-bild the degraded immune system.

And it works. I’m still far from the shape I was in before I caught lyme, but the tendency is right. It will take time, it is allowed to take time. I’m in no rush, and I won’t give in.

It’s quite possible that my lyme disease, wreaking havoc untreated for approx. fifteen years, might have caused irreversible damage to joints, ligaments and the nervous system – that parts of my body might no longer be mended. Well, then that’s how it is. As long as I know that I do everything in my power to stop the disease from impairing my cognitive functions and my fine motor skills, all treatment is invaluable.

And who knows? Everything I do right now is restoring the balance in my body, and a balanced body holds an amazing ability to heal. Maybe I’ll be good as new, or even better. Time will tell.

Among all the things I’ve learned during this process, one of the most fascinating sounds like cut out of one of the numerous health leaflets I’ve read with eyes half opened all my life: The importance of exercise and sleep.

I’ve always been aware of the benefits of exercise and sleep in maintaining health (even though I’ve sometimes neglected to put it all into practice.) What I now realized, however, is how important getting a good amount of sleep, and – even though often reluctantly – exercising one’s body is for the purpose of speeding up recovery from illnesses such as this.

Exercise raises the oxygen level in the blood, heats up the body, and thus creates an unfavorable environment for the bacteria. Exercise also increases circulation and flushes out waste products. Sleep gives the body time to work, and build – excused from meeting the bigger need for energy during hours awake. Simple things, important matters, in a desire to regain quality of life.

“Liikunta voinnin mukaan” (Finnish, freely translated “Exercise listening to your body”) is emphasized at the clinic where I’m undergoing treatment. It’s all about stressing the body just enough that the positive outcomes outweigh the negative – often temporary – ones. Finding that balance isn’t always quite easy, but one learns through trial and error.

Starting my treatment in the beginning of June, I could jog a little short of 2.5 miles, at a snail’s pace, and a few hours later I already had aching muscles and joints, and nerve buzzing. Entered tinnitus and lightheadedness, lasting for about 36 hours. Two days ago, I jogged (still at a somewhat humble pace) about 4.3 miles, without any other after-effects than a slightly stiff back the following day.

Yes, it gets better. I’m heading in the right direction, and I look positively upon the future. Soon I will try doing some light lifting to see how the body responds – yet another step in my highly personal research.

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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.

Jakobstad, June 21, 2015

It has now been three weeks since I started my treatment for lyme disease at the clinic in Helsinki. I traveled home to Jakobstad to celebrate Midsummer, and will return to the clinic at least for next week.

The frequent IV-treatments with the antibiotic Azithromycin are now completed. Starting now (week 4), I could have chosen to transfer to taking that medication orally. I still decided to get it IV-distributed at least once more, hoping to make the transition as smooth as possible.

The other antibiotic I’m on is Doxycycline, a common broad-spectrum antibiotic. I started on Doxy in the 2nd week of treatment, and will continue throughout these two initial months of treatment.

Thus, I am 3/8 into my first treatment plan. So.. am I feeling better? Yes, I am. There is no dramatic improvement, but still a definitive one.

Those with a skeptical approach towards long-term antibiotic treatment will now be fast to refer to the lack of scientific evidence proving that these treatments would produce good results in treating lyme disease, and that, on the contrary, there are several randomized controlled studies in which the benefits of long-term antibiotic treatment doesn’t differ noticeably – if at all – from placebo.

I myself do not question the results of these studies, the numbers speak for themselves. But what you reap is what you sow.

These kind of studies tend to isolate one of many cornerstones – the medication – from everything else. What the studies doesn’t care for – and of which most doctors actually don’t seem to have a clue – is that lyme disease isn’t fought using antibiotics only.

Antibiotics can be – and often are – an important part of the treatment, but there’s so much else that has to co-operate favorably in the fight against the bacteria. The body has to retrieve its balance, inflammations have to be tamed, the immune system has to be strengthened, toxins have to be efficiently removed from the body.

Nutrition supplements, change of diet, detox – all are needed. Practicers of conventional medicine seems to know alarmingly little about this crucial fact, at least according to my personal experiences. Especially specialists – and maybe particularly neurologists – seem to be unable to see the forest for the single tree they water, nourish and care for.

So how come I feel an improvement? I take antibiotics. I battle inflammations by eating curcumin. I take serrapeptase to dissolve the biofilm where certain bacteria reside. I eat grapefruit seed extract to bust the cysts that the bacteria is able to transform into. I take highly potent multi vitamins, beta glucan and vitamin B (intravenously) to strengthen my immune system. I have done a screening for food intolerances (gluten, egg and dairy products amongst others) and avoid these. I take acetylcysteine and CoQ10 to protect mitochondrias. I detox by taking glutathione, drinking lemon juice, using an infrared sauna, and jogging runs.

No, antibiotics can’t single-handedly destroy an insidious infection which have been allowed to riot freely for fifteen years – especially not when it as in my case fights side-by-side with mycoplasma and TWAR. But all this has to change now. Counterattack on all flanks simultaneously.

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.