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 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.