Lyme Disease

The difficulty of diagnosing chronic Lyme disease is compounded by one fundamental problem: Many doctors believe it doesn’t even exist. It’s important to understand that much of the controversy is driven by semantics.

Fibromyalgia and chronic fatigue syndrome are examples of idiopathic diseases. That means they don’t have an apparent or known cause. To many people who are sick, “chronic Lyme disease” feels more accurate than an idiopathic label. It communicates that their symptoms are caused by an immune system response to infection. The mainstream medical community will use a more neutral term, post-treatment Lyme disease syndrome (PTLDS), to imply that symptoms might have several causes.

In a strict sense, Lyme disease is caused by Borrelia burgdorferi — the specific bacterial species discovered in the town of Lyme, Connecticut. But there are actually more than 300 strains of Borrelia that can cause similar chronic symptoms. While only burgdorferi is widely recognized as causing Lyme, the general public tends to lump all Borrelia infections together. This causes confusion.

They checked, but I tested negative.

Finding a doctor who will check for Lyme disease is progress. But often, the battle isn’t over. With limited diagnostic tools available, testing can create confusion.

The ELISA and Western blot are the only FDA-approved tests for Lyme disease. Both measure specific antibodies made by the immune system in response to the infection.

But your body takes time to develop antibodies. Usually, a detectable amount won’t appear in the bloodstream until after the first few weeks. For that reason, early tests have a high rate of false negatives — missing as many as 60% of well-defined cases.

Even if the case of a true negative test, the ELISA and Western blot can only detect bacteria exposure. Since antibodies can be produced for months or years after an infection has cleared, testing can’t rule out Lyme as a cause of persistent symptoms.

Lyme infections are usually treatable with timely antibiotics. But, even though the shortfalls of testing are well established and acknowledged by the CDC, many doctors wait for a positive test before starting antibiotics. The longer a false negative delays treatment, the more difficult Lyme disease is to contain — and the more likely it is to cause long-term issues.

They treated, but I didn’t get better.

Antibiotic treatment usually wipes out Lyme disease. But studies show that standard short-term protocols fail 24–50% of the time.

Even the larger medical community says 10–20% of patients get post-treatment Lyme disease syndrome (PTLDS). This is marked by lingering symptoms like fatigue, musculoskeletal pain, disrupted sleep, and reduced mental function.

To understand why acute treatment might fail, it’s important to know the three factors that add up to chronic infection.

Immune dysfunction: Your immune system keeps a catalog of cells native to your body. When it notices a foreign substance — like a pathogenic bacterium or virus — it can create neutralizing antibodies. When functioning normally, the immune system leaves bacteria alone unless they’re causing a problem; this is like when police ignore low-level speeders. But your immune system can also overreact, creating too many antibodies. They attach to anything that looks similar to the original bacteria. That’s an autoimmune disease.

Excess toxins: Some toxicity is normal. Your body deals with it through elimination organs: the liver, lungs, colon, kidneys, lymph, and skin. But sometimes, whether due to organ malfunction or increased exposure, we can accumulate heavy metals like lead, mercury, and arsenic. These toxins can reduce the cells available to suppress undue immune response.

Pathologic microbes: A microbe is a living organism that’s too small to be seen with the naked eye. They live on and inside our bodies. Commensal microbes are like the neighbors you never see — neither helping you nor causing harm. Other microbes are symbiotic, or mutually beneficial; they’re the few neighbors you like. Still other microbes, including bacteria and viruses, are potentially pathologic. The last type is like a bad neighbor who parks on your grass. They’re a nuisance, but they’re not a big problem unless provoked.