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Life with Chronic Lyme Disease (Lyme Disease Syndrome) is nasty / Boing Boing



Carl Bode is a respected and talented technology journalist, but he works with enormous weight: he has been fighting for "Lyme disease syndrome after treatment" for nearly a decade ̵

1; collectively known as "Chronic Lyme Disease" – the twins are fighting for incurable painful illnesses and skeptical dismissals from a large part of the medical establishment.
Bodde infected with Lyme disease from a tick bite while cleaning the brush at his home in the Hudson Valley. After his antibiotics, his symptoms disappeared, but a month later he had a number of "strange new symptoms", from "severe arthritis in the thighs and arms" to "recurrent and debilitating headaches, chills, cold sweats, frequent fits of disorientation, vertigo and even depersonalisation, a terrifying sense of feeling that you are somehow outside of your physical body.
More antibiotics brought temporary relief, but then the symptoms recovered, accompanied by "insomnia and extreme sensitivity to caffeine, sugar and dairy products." A decade later, he still has frequent recurrences.

Nobody is sure what's going on with PTLDS. The majority of people who take Lyme disease are improving, but an "indeterminate number" continues to experience long-lasting symptoms, sometimes lasting indefinitely. Patients from the Lyme Islands are looking for "lymph" doctors who are willing to diagnose on the basis of symptoms rather than blood work but this has their own problems with a misdiagnosis (Lyme disease has so many symptoms that it is sometimes called "great imitator") and high costs (Lyme administration's written doctors require a high premium for their services).
Ten years later, Bode lives in the northwest of the Pacific Ocean after moving to minimize the risk of re-infection. He says he keeps his symptoms under control with an anti-inflammatory diet along with yoga and stress reduction. But he believes that Lime is underestimated and more serious, as we suppose, and that climate change leads to ill-understood disease caused by ticks in new territory.

The further complication of public awareness is the fact that Lyme disease itself is only one part of the problem.
While Borrelia burgdorferi is the most prevalent American variant of bacteria, Borrelia afzelii and Borrelia garinii are more common in Europe and are unlikely to be tested if the patient contracted diseases abroad and returned to the United States.
Likewise, ticks carry a wide variety of concomitant infections, including babesiosis, anaplasmosis, erlichiosis, recurrent fever, tularemia, and spotty fever from the Rocky Mountains. Over the past two decades, seven new nursing mothers have been discovered. And as the warmer weather of climate change expands the tick season, the problem is accelerating.
Often these diseases have not been tested in countries where they have historically been less common, and many of these peripheral illnesses come with their own disturbing symptoms. For example, a bite from a lone star tick in Texas can cause an allergy to meat, which highlights the poorly understood nature of these infections.

What Is Forever Lym's Disease [Karl Bode/Elemental]

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

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Cory Doctorow

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