Jakobstad, August 5, 2015

Nine weeks have passed since I started my treatment at the clinic in Helsinki, Finland. The fight goes on.

It is immensely frustrating when worse days – one, or several in a row – occur. Like slipping, falling, trying to get a new grip during a climb in which you thought that you’ve already conquered that certain stretch. Like if the previous effort was in vain.

Then you need to try to look objectively at the broader picture – even though its hard when you’re in the midst of it all. You need to dare to believe that there’s progress, that it’s all just two steps up, one step back.

If the battle could be fought against a single enemy, the insidious and sly borrelia burgdorferi bacteria, it all would be so much easier. But it’s often misleading to talk only about lyme disease and its different phases, as the reality in most cases tend to be much more complex.

What I myself – together with many others – struggle with are the syndrome of something that could be defined as multi-systemic infectious disease (Dr. Horowitz), or simply “a mess of things” (Dr.Brooke/Dr.Ross).

I find the allegory given by Brooke/Ross in the internet article I linked to above to be most describing. The body is compared to a rain barrel, and the ability of the body to protect and heal itself is compared to the rain barrel spigot. An overflowing rain barrel represents disease.

There are two factors that determine if the barrel overflows:

  • How hard the rain falls
  • How open the rain barrel spigot is

When diseases are transmitted through a tick bite, the rain falls quite heavily. I write diseases, since it seems to be more of a rule than an exception that several other infections are transmitted through the same tick bite that gives us lyme disease.

We find ourselves in a tragicomic situation where vets would probably be able to help us in a better way than most doctors we turn to with tick bites or suspected lyme disease. Vets seem to have a broader experience of the multitude of diseases that can be transmitted through tick bites.

Most MD’s are still looking upon one (if even that!) possible tick-borne disease at a time, seemingly uninterested in the overall picture. Babesia, bartonella, ehrlicia/anaplasma, rickettsia are examples of co-infections that often occur – infections which conventional medicine often fails to detect, or just flatly neglects.

Mycoplasma and clamydia pneumoniae (TWAR) are also often parts of the pathology, as are several viruses – herpes, CMV, Epstein-Barr, Coxsackie, etc. These bacterias/viruses can remain dormant in the body, not causing any symptoms. Drops in a barrel at risk of overflowing.

Even though rain falls hard – as during tick-borne infection – an effective, open rain barrel spigot can help the body to deal quite successfully with pre-existing viruses and newly entered bacteria, including borrelia burgdorferi: keep them at bay, dormant, letting us live on without symptoms for many years, even for life.

But during torrential rainfall, and/or if the spigot is clogged – if the total load becomes to much to handle – disease can break out violently, suddenly, seemingly out of the blue. The barrel overflows, and we are flooded by the multi-systemic infectious diseases syndrome, often somewhat narrowly defined as lyme disease.

Aware of the complex, comprehensive picture, we have to aim broadly, and also far. We have to fight bacteria and parasites, the immune system needs to be strengthened, crippled organs need to be set free in order for them to work as intended, our physical stamina has to be restored.

The longer the barrel has overflowed, the longer the way back. Baby steps are encouraged, as is keeping one’s head up – relentlessly fixed on the long-term goal – even during the bad days. All this remembering that two steps up, one step back still lead us home.

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.

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.

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 30, 2015

Is the information given to us by authoritative agencies and experts regarding lyme disease to be trusted? Nope. In fact, the information is so contradictory and flawed that it’s nothing short of amusing. But the laughter sadly gets stuck in your throat when you realize the impact of this gathered ignorance – whether it is out of deliberateness or obliviousness.

To saw a bit into one of the rotten trees, we can ponder the different timeframes stated regarded the risk of borrelia transmission from a tick attached to the body. These are all sources from Sweden and Finland, a deliberate choice in order to illustrate that our situation here is much like that found in most other countries all over the world.

Here is some expertise drawn from the internet (quotes and links can be found at the bottom of this page):

  • 2009: The transmission usually doesn’t occur immediately (Infectious diseases specialist Leif Dotevall)
  • 2010: The transmission doesn’t occur until after 24 hours (Infectious diseases specialist Kathrina Ornstein)
  • 2010: The risk of transmission during the first 48 hours is practically zero (Peter Wahlberg, professor Dag Nyman)
  • 2010: Transmission might have occurred early, before the tick had engorged (Professor Dag Nyman et al.)
  • 2012: Transmission occurs after about 24 hours (Epidemiologist Marika Hjertqvist)
  • 2013: Transmission doesn’t occur immediately (fact-checking by Dotevall)
  • 2014: The earliest onset for transmission is 12 hours (fact-checking by Dotevall)

Confusing? Very much so. Ranging from a possibility of immediate transmission to practically no risk whatsoever during the first 48 hours. Furthermore, two of the experts contradict themselves. And this mess of a stew is cooked by different experts in the field.

What do researchers say? The reason for the slow transmission rate is presented to be due to the bacteria residing in the gut, and that traveling up to the bite wound takes quite some time. There is, as you can see, quite different opinions about how long that might take.

Still, in one extensive research (in which 1962 ticks were examined), the borrelia bacteria was found in the tick’s saliva prior to the bite, making an immediate transmission possible. Is this new and ground-breaking research? No. The study was published in 1995.

Transmission during the initial 16 hours is also well documented (as outlined here.) Furthermore, in several of these studies the transmission rate at 48 hours has been 100 percent – that is, the infection has been transmitted inside a timeframe following the tick bite in which professor Dag Nyman have described the risk of transmission as being slim to none.

I can think of no more than two possible explanations for this: The experts haven’t posessed the needed knowledge, or they’ve chosen to ignore it.

If they didn’t know, they are not fitted for their jobs. If they’ve chosen to selectively ignore part of the facts, they shouldn’t be allowed to hold their positions. In any case, these experts cannot be trusted.

Drawn upon available research in the field, my layman’s summary of the risk of transmission is as follows:

  • when bitten by a tick, the borrelia bacteria can be transmitted immediately
  • the longer the tick stays attached, the greater the risk

– – – – – – – – – – – – – – – – – –

  1. “The borrelia bacterias are usually not transmitted immediately after the tick has drilled its mouthpiece into the skin. The risk of borrelia transmission increases depending on the duration of the tick bite. In exceptional cases, spirochetes can be transmitted after only a few hours, but the risk is considered to be greatly reduced if the tick is removed within 24 hours.”
    (Information från Läkemedelsverket, Sweden 2009, text by infectious diseases specialist Leif Dotevall. In swedish, translated by me)
  2. “If the tick is removed within 24 hours one shouldn’t catch lyme disease”
    (Sveriges Radio 2010infectious diseases specialist Kathrina Ornstein. In swedish, translated by me)
  3. “The risk of catching the disease is […] practically zero if the tick is removed within 24-48 hours after the bite.”
    (Borreliagruppen på Åland, 2010, Peter Wahlberg and professor Dag Nyman. In swedish, translation and bracketed ellipsis by me)
  4. “Interestingly, two of the study subjects bitten by Bb-positive ticks and who seroconverted had been bitten by ticks that were not engorged, suggesting that transmission may have occurred early. However, previous studies have shown that transmission during tick feeding may commence earlier in Ixodes ricinus than in Ixodes scapularis. This may explain the seroconversion in the subjects bitten by ticks that were not engorged.”
    (Linda Fryman et al. – including professor Dag Nyman – 2010, in english, original quote.)
  5. “The borrelia bacteria resides in the gut of the tick, and hence it takes approximately 24 hours after the tick bite until the disease is transmitted”
    (Aftonbladet 2012, Marika Hjertqvist, epidemiologist at Smittskyddsinstitutet, Sweden. In swedish, translated by me.)
  6. “The transmission of the borrelia bacteria does not occur immediately, but likely at least 12 hours later. This is why it is important to remove the tick as soon as possible.”
    (INFPREG/Karolinska Sjukhuset 2013, text fact-checked by Leif Dotevall. In swedish, translated by me.)
  7. “[…] when bitten, it takes at least 12-24 hours until the borrelia [bacteria] travels from the gut of the tick to its salivary glands and the disease is transmitted.”
    (Mats Reimer in Dagens Nyheter, 2014, text fact-checked by Leif Dotevall. In swedish, translation and brackets by me.)

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.

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 16, 2015

How is lyme disease diagnosed? By a positive blood test performed 6-8 weeks after being bitten by a tick and developing an erythema migrans rash, according to Finnish doctors. By a clinical diagnosis, the LLMDs (Lyme Literal Medical Doctors) say.

The clinical diagnosis given by an LLMD is based on the following factors:

  • risk of infection – living in an area with a high occurrence of ticks, the patient being engaged in outdoor activities, aso.
  • possible tick bite, possible erythema migrans – 50% of people with lyme don’t recall being bitten by a tick. 50% of people with lyme never develop erythema migrans.
  • Symptoms – the physical and mental hardship and problems described by the patient
  • physical exam findings
  • supportive testing

Why isn’t a positive test result the decisive factor when it comes to LLMDs? Because the tests aren’t reliable.

There still doesn’t exist a test that can give an assertive answer regarding lyme disease. The standard test performed in Finland is a test called ELISA, which looks for lyme antibodies. ELISA misses 50% of the infections. The LLMDs avoid this test, because it’s simply not accurate enough.

A lumbar puncture (spinal tap), testing the cerebrospinal fluid, is tool nr 2 in Finnish diagnosis. That procedure gives a positive result in under 20% of people with lyme. The only advantage to that test is that it’s very predictive – if it is positive, the patient has lyme with a certainty of 100%.

After these two tests, the Finnish medical care makes a halt, points at the test results and say “you don’t have lyme. It’s something else.” And often it doesn’t take long until the patient trots away to the pharmacy with a prescription for antidepressants.

The LLMDs don’t care for the ELISA-test, but start by examining the patient throughly – physically, but more important: by letting the patient describe his/her symptoms.

Blood tests are often taken, in order to check for deficiency diseases, and to rule other things out.

The most common way to continue testing is to run a Western Blot test. This test searches for antibodies attached to proteins that are very specific for the lyme bug. The proteins are classified by weight and are called bands. The test examines these specific bands.

Some say that positive results on any two bands are needed, others claim that a positive result on a single band is enough. Using the later criteria, the test catches 80% of those with lyme.

So if you test positive in a Western Blot, are you then officially recognized as having lyme disease? Correct me if I’m wrong, but I don’t think that is the case.

What if you belong to the 20% that slip by undetected through the Western Blot test? Then you find yourself in my category. Together with us, there are many that have carried this disease for a long time – people with chronic lyme disease, something that does not exist in our country.

Then you might want to measure cellular activity against lyme, and against the many co-infections that are so commonly associated with lyme – other diseases, hanging on, acting together, helping to break down the body. Examples are mycoplasma and TWAR (Chlamydophila pneumoniae). There are many more. And all of them can be transmitted by a tiny, seemingly harmless tick.

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.