The Science Isn’t Settled on Chronic Lyme

If you know anyone who’s ever been diagnosed with Lyme, or who thinks they may have Lyme disease even though doctors say they don’t, then you’re probably very much aware of just how hard it is to get that diagnosis. Slate highlights the problem with an article on the evolution of defining “chronic” Lyme — a condition that over the years has repeatedly been denounced as “all in your head” by both health officials and Slate itself.

Slate’s investigation uncovered a plethora of reasons “to suggest [the symptoms] are not all in your head. Because there’s no definitive test to determine active infections or reinfections, and because treatment isn’t definitive either, Slate suggests that the science isn’t as settled as some may assert. Another confounder is that women make up the majority of patients with chronic Lyme.

Although many still attribute transmission exclusively to ticks, according to Dr. Deitrich Klinghardt, one of the leading authorities on Lyme disease, the bacteria can also be spread by other insects, including mosquitoes, spiders, fleas and mites. Common side effects of tick bites include an itchy "bull's eye" rash, pain, fever, and inflammation.

Symptoms of Lyme disease typically start out with unrelenting fatigue, recurring fever, headaches, and achy muscles or joints. The disease may progress to muscle spasms, loss of motor coordination, and even intermittent paralysis, meningitis, or heart problems. For a more complete list of symptoms, refer to the Tick-Borne Disease Alliance.

The paradox is that many Lyme patients outwardly appear completely healthy, which is why Lyme disease has also been called "the invisible illness" — and most likely why so many health officials may be skeptical when these patients report so many nonspecific symptoms. People with Lyme often "look good," and their blood work appears normal, but their internal experience is a different story altogether, and as a result many simply end up being referred to a psychiatrist — while they continue to suffer from the illness.

Lyme disease is notoriously difficult to diagnose because it has similar symptoms to many disorders such as multiple sclerosis, arthritis and amyotrophic lateral sclerosis (ALS), to name a few. Generally speaking, doctors will order lab tests to look for bacteria known to cause or to be associated with Lyme disease infection. The problem is even the best two tests recommended by the CDC are notoriously unreliable.

There is one test, though, called IGeneX that specializes in Lyme testing that can detect infection much better than standard blood tests. IGeneX is accredited by the Centers for Medicare and Medicaid Services (CMS), and they hold licensure in different states including California and New York. They offer several tests for Lyme infection that are highly specific, checking for different bacterial strains and co-infections. They also offer a procedure that checks for bacterial DNA, which is ideal for people who are not producing antibodies to Lyme-causing bacteria.

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