I want you all to see an article I just found via Relative Risk Blog. Its about ‘Chronic Lyme Disease’. About a young woman who was aggressively treated by a ‘questionable’ practitioner who had ‘cured herself’ of ‘Chronic Lyme’. No one believes in ‘Chronic Lyme’. ‘Everyone’ was ‘against’ this practitioner, while she insisted she ‘KNEW’ what she was talking about. Questionable tests. Off-label prescriptions. And this practitioner almost killed this young woman.
Janet Love and Dana Rosdahl come across as sincere in their belief that doctors routinely misdiagnose the disease, leading to unnecessary pain and bad health for literally millions of people.
“We know how Lyme works, and we know how to fight it,” Dana Rosdahl says. “But it’s not an easy road for the patients or for us.”
“I believe that at least 70 percent of the population are infected [with Lyme], whether they know it or not,” Love says. “I didn’t, in my own case, for 15 years. We are passing infected blood directly into the blood supply. Some people think this is wacko, but it’s not.”
Alyssa never did test positive for Lyme disease, despite extensive blood work and other evaluations.
But that didn’t stop the clinic from continuing to treat the ailing young woman for full-blown Lyme.
That included a regimen of potent antibiotics that landed Alyssa in a Gilbert emergency room in February 2010.
The most common blood test for Lyme, called the ELISA, provides so many false-positive readings that most doctors won’t use its results as a sole basis for diagnosis.
Prescribing long-term antibiotics to treat what supposedly is “chronic Lyme disease” (in itself a controversial diagnosis) is a practice most doctors see as perilous.
But Rosdahl and Love say what went awry was not their fault.
“Alyssa is a sweet little girl,” Love says, “though I didn’t think she would have the discipline for our program. But Dana decided to treat her out of compassion. We never hurt her.”
She [Love] keeps the desktop devices in her Remnant office and says they accomplish amazing things, including having saved her own life from a vicious bout with Lyme disease.
Insurers also are loath to cover more than a few weeks of antibiotics at a stretch, so Remnant’s long-term patients (which are most of them) have to pay for everything out of pocket.
But business has been good at Remnant since it opened in early 2010.
“I feel better than I have in 30 years since I hooked up with Dr. Dana and Jana and realized what was up,” says Clovis Jones, a 65-year-old Vietnam War veteran and retired airline pilot. “They have saved my life. They know what they are doing, and they know Lyme disease.”
Some Lyme-ites cling to wispy theories of a lingering U.S. government/big-insurance-company conspiracy against the masses.
They consider Lyme as an evildoer of monumental magnitude, and that the “medical establishment,” which includes the insurance industry and the U.S. government, intentionally has misled the American public as to its prevalence.
“If we could support them, they would have been here a long time ago. But people are desperate to figure out what’s making them sick, and they grab onto a Lyme diagnosis whether it’s right or not.”
Some Lyme-ites, including those at Remnant, suggest that the disease also can be transmitted in utero or by sexual contact.
Janet Love is adamant that she contracted Lyme disease genetically from her parents, natives of Missouri and Texas. She also says she’s sure that she transmitted it to her son Garrett (who is Remnant’s office manager).
Alyssa Goodale’s mother, Lynn, says both Love and Dana Rosdahl informed her that all six Goodale children contracted Lyme genetically.
“When Dana first told me that Lyme was passed along in families, it rocked my world, to say the least,” Lynn Goodale says.
Dr. Horwitz adds, “To take a disease and to extrapolate and say that everyone is infected — that based on alleged clinical symptoms, this is Lyme, even in the absence of data — makes no sense to me.”
He adds a cautionary note relevant to Alyssa Goodale’s case:
“In the absence of a clear diagnosis, you shouldn’t just assign something based on your own theories or probabilities and promulgate a myth. That’s when you take a step that’s beyond what we do.”
A recent paper by the American Lyme Disease Foundation concluded, “There is no epidemiological or clinical data to support the sexual transmission of Lyme disease.”
The CDC goes further, saying there is “no evidence that Lyme disease is transmitted from person to person.”
I definitely think Chronic Lyme Disease and Chronic Fatigue Syndrome have something in common, but its not XMRV.