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.

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.