First I was told it was being overdiagnosed, so is it any wonder I'm ticked off?
"When the ‘cure’ doesn’t end the pain; Some Lyme disease patients have symptoms that can linger for years despite standard treatment. Scientists are puzzling over how that can be" by Beth Daley | Globe Staff, August 18, 2013
Brandi Dean was catapulted into one of the most contentious debates in medicine today: Why do up to 25 percent of people treated for Lyme disease report lingering symptoms, lasting from days to years?
“This is a huge question, said C. Ben Beard, chief of the Bacterial Diseases Branch of the US Centers for Disease Control and Prevention. “We really need to understand what is going on.”
Many Lyme sufferers and activists, and some doctors are convinced that the bacteria that cause the disease can, especially if not caught early, evade antibiotics and the body’s immune system by burrowing into joints, the nervous system, and other tissue to wreak sustained havoc.
Most infectious disease specialists, however, say there is a lack of convincing evidence for this persistent infection and that a month or less of antibiotics usually knocks the disease from the body. They suggest other causes: another illness or reinfection through a second tick bite. Or patients may have a syndrome triggered by Lyme that causes long-term fatigue or pain.
Underlying the emotional impasse is this simple fact: Lyme bacteria have rarely been found in patients after a cycle of antibiotics. Lyme tests look not for the bacteria but for antibodies, which the immune system makes to attack the microbe. Now researchers are looking more intensely for the bacterium itself in people, hoping to resolve whether the organism, or some remnant of it, makes some people sick.
No one disputes that many people remain ill after they should have been free of symptoms. A conservative estimate suggests there could be more than 5,000 people in Massachusetts alone experiencing these lingering problems each year.
That number includes only people who get positive or probable test results using CDC diagnostic criteria; Lyme activists say there are thousands more people who are missed because the government’s criteria are too narrow.
Many patients say they find relief by taking antibiotics for months or even years, which they see as further evidence they have a persistent bacterial illness. The medical establishment frowns upon the practice, however, because it says there is no proof long-term therapy helps, and it can harm patients and society, by fostering the emergence of antibiotic-resistant pathogens. Many insurers, in turn, refuse to pay for extended dosages of the drugs....
The nemesis Dean blames for her illness has a long history of making people miserable.
The Lyme germ is part of a group of slender bacteria called spirochetes that are coiled like a twisted telephone cord. Filaments attached at both ends of the cell spiral like a corkscrew, propelling the organism.
Not all spirochetes cause disease — some live in our mouths, for example — but those that do have caused widespread suffering: Syphilis, a sexually transmitted infection with a range of symptoms, and relapsing fever, which causes cycles of high fever, are both caused by types of spirochetes.
Scientists who first observed spirochetes under a microscope thought they were animals because they behaved so differently than other bacteria — curling up and springing forward to change direction — according to Dr. Alan Barbour, a longtime Lyme expert at the University of California Irvine.
“I find them endlessly fascinating,’’ he said.
No one knew exactly what pathogen ticks were spreading to cause a mysterious arthritis-like disease affecting children in and near Lyme, Conn., in the 1970s. But In 1982, Willy Burgdorfer of Rocky Mountain Laboratories in Montana identified the spirochete in ticks, and the organism was named in his honor: Borrelia burgdorferi.
It’s hard not to admire the Lyme bacteria’s survival instincts. It has adapted to live in numerous animal hosts, from small rodents to birds. In humans, once the spirochete is deposited in the skin by a tick, it can motor off to lodge in joints, the nervous system, heart, and other places. It changes the proteins on its surface to disguise itself from the immune system.
Some Lyme patients and some doctors view the spirochete as having the same capabilities as tuberculosis, which can lie latent in the body and take long courses of antibiotics to eradicate. But TB is a different type of bacteria, specialists say, and there is no evidence yet that the Lyme spirochete behaves the same way. In fact, spirochetes have been shown to be quickly killed off by antibiotics.
Yet some researchers are investigating if some spirochetes can hide from antibiotics. One University of New Haven-led study published last year showed that in a test tube, concentrations of Lyme bacteria can group together, and the study’s lead author has suggested the structure might allow some cells to resist antibiotics.
The 13th annual international conference on Lyme and other tick-borne diseases is being held in Boston this week, and the scientists attending are scheduled to discuss research into why some treated Lyme patients remain sick....
It's all in their head.
--more--"
Best thing to do?
Kill 'em!
Kill 'em!
Kill 'em all!
I feel so fatigued. Must be the anger.
