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Life with chronic Lyme disease ("post-treatment Lyme disease syndrome") sucks / Boing Boing



Karl Bode is a respected and talented tech journalist, but he labors under a tremendous burden: for nearly a decade he has struggled with "post-treatment Lyme disease syndrome" ̵

1; colloquially known as "chronic Lyme disease" – enduring the twin struggles of a largely untreatable debilitating illness and skeptical dismissals from much of the medical establishment.

Bode contracted Lyme disease from a tick while clearing his Hudson Valley home. Recurrent and debilitating headaches, chills, cold sweats, frequent bouts of disorientation, vertigo, and even depersonalization, a terrifying sensation of feeling as though you are somehow outside of your physical body. "

More anitbiotics brought relief, but then the symptoms recurred, joined by "insomnia and extreme sensitivity to caffeine, sugar, and dairy." A decade later, he still has frequent recurrences.

No one is really sure what's going on with PTLDS. Lyme disease get better, but to "unspecified number" continue to experience long-term symptoms, sometimes lasting indefinitely. Lyme sufferers seek out "Lime Literate" Doctors, who are diagnosed with symptoms of Lyme disease, have misdiagnosis (Lyme disease) ) and high expenses (Lyme literate doctors command a high premium for their services).

A decade later, Bode is living in the Pacific Northwest, having relocated to minimize the risk of reinfection. He says he keeps his symptoms under control with an anti-inflammatory diet. But he believes that Lyme is underdiagnosed and more and more.

Further complicating public awareness is the fact that Lyme disease, per se, is only one part of the problem.

While Borrelia burgdorferi is the most common variant of the bacteria, Borrelia afzelii and Borrelia garinii are more common in Europe, and are not likely to be tested for the United States.

Similarly, ticks carry a wide variety of co-infections including babesiosis, anaplasmosis, ehrlichiosis, relapsing fever, tularemia, and Rocky Mountain spotted fever. In the past two decades, seven new tick-borne germs have been discovered. And the warm weather from climate change widens tick season, the problem is accelerating.

Often these illnesses have not been tested for in those states where they have historically been less prevalent, and many of them are experiencing their own confounding symptoms. A bit from the lone star tick in Texas, for example, may result in the development of allergy to meat, highlighting the poorly understood nature of these infections.

What It's Like to Have Lyme Disease Forever [Karl Bode/Elemental]

( Image: Hannah Garrison, CC-BY-SA )

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Cory Doctorow

I write books. My latest are: YA graphic novel called In Real Life (with Jen Wang); A nonfiction book about the Internet and the Internet called Does not Want to Be Free: Laws for the Internet Age (with introductions by Neil Gaiman and Amanda Palmer) and a YA science fiction novel called Homeland (it's the sequel to Little Brother) , I speak and tumble, too.

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