Have you and your doc considered an empiric trial of 400 mg doxycycline
per day?  If the rash is TBD related, it should respond to that very
quickly.

I came to this newsgroup after starting such a regimen; the endotoxin
release by borrelia temporarily ratcheted my tinnitus up to the sound of
a jet engine in my head.  As I stayed on the doxy, the noise got quieter
and quieter, and my overall energy and stamina improved.

Susan

Forbes.com

Health
Lyme Inc.
David Whelan 03.12.07

Ticks aren't the only parasites living off patients in borreliosis-prone
areas.

Three years ago Heather Jenkins, a 30-year-old mom in Huntersville, N.C.,
was constantly fatigued and prone to colds. Her internist referred her to
Dr. Joseph Jemsek, a self-described "Lyme Literate" doctor. During the
initial consultation he asked if she had been bitten by a tick or gotten a
rash. No, she replied, but she had gone camping once in Tennessee. He
suggested she may have picked up Lyme disease there and sent her blood to a
California lab that specializes in tests for tick diseases. A week later the
test results came back: She had been infected by Borrelia burgdorferi, the
spirochete that causes Lyme disease.

Jemsek installed a tube in Jenkins' arm and every two weeks for a year and a
half sold Jenkins a $3,000 course of Rocephin, a powerful antibiotic, to
infuse on her own at home. When she developed infections around the catheter
in her arm the nurse would switch it. When her arms wore out she got a port
implanted in her chest. As she waited for Jemsek to treat her latest
infection, she collapsed on the floor, vomiting. Drug-resistant bacteria had
overtaken her entire body. Jenkins landed in a hospital intensive care unit
for four weeks, barely surviving. A doctor at Carolina Medical Center, where
she recovered, told her that their labs could find no evidence in her blood
that she'd ever had Lyme. "I was outraged," she says, and is now suing
Jemsek. The near-death odyssey cost her insurance company $400,000. The
action is pending, and Jemsek has made no comment.

Lyme disease, with 20,000 cases reported annually, ranks low on the list of
the most prevalent infectious diseases. But it ranks first in rancor
generated in the medical community. The disease is caused by bacteria
related to syphilis that enter the body through a tick bite. The typical
Lyme infection responds to simple antibiotics, although symptoms like
arthritis and fatigue may linger in a subset of patients. Researchers at
academic medical centers who study the disease say that so-called chronic
Lyme, or post-Lyme, is very rare, hard to detect and not treatable with any
further doses of antibiotics. The mainstream doctors warn about an epidemic
of bunk diagnoses and dangerous treatments. Insurers often refuse to cover
the cost of treating chronic Lyme.

Arrayed against the establishment is a fraternity of Lyme specialists, many
of whom have built large practices treating ostensible Lyme patients with
expensive courses of antibiotics.

Last year the North Carolina state medical board brought Jemsek in for a
disciplinary hearing. Ten patients testified to nightmarish experiences. A
widower said his wife had died from a morphine overdose related to Jemsek's
Lyme treatments. Jemsek disputed all the charges vigorously. He also had 200
supporters show up, many of whom believe he cured them of a terrible
disease. The Lyme Disease Association, a group that supports Jemsek, says
that 30 chronic Lyme doctors have been similarly targeted by medical boards.
Jemsek ultimately received a "suspension with stay" that allows him to keep
practicing.

The light penalty may reflect the power of Lyme support groups, which blast
politicians with mail and phone calls to ensure their access to expensive
care. Standing with them now is Connecticut Attorney General Richard
Blumenthal, who has received awards from Lyme groups and late last year
announced that he was investigating the Infectious Diseases Society of
America, an 8,000-member organization of doctors trained to understand
diseases like AIDS, malaria and tuberculosis. Their crime? Issuing Lyme
treatment guidelines to doctors that warned against using long-term infused
or oral antibiotics.

Blumenthal, who hasn't yet issued any lawsuits in the case, says that the
IDSA's guidelines may be in violation of antitrust laws. "Lyme disease is an
extraordinarily insidious and widespread problem in Connecticut. We want to
make sure that patients and physicians have unfettered choices," he
declares. Insurance companies, he goes on, may be colluding with the IDSA to
deny care. It's an odd charge, since a 1996 policy statement from the
Federal Trade Commission and the Department of Justice says that treatment
guidelines issued by medical societies do not limit competition. "You want
medicine to advance by debate, not hampered by lawsuits," says Robert
Buchanan, a medical-antitrust attorney in Boston.

Despite intimidation from elected officials like Blumenthal, the
establishment has scored some hits against Lyme specialists. In 1993
Vithaldis Shah, a New Jersey doctor, had his license yanked for five years
for sickening Lyme patients with long-term antibiotic treatments and
receiving a payment from the infusion company. In 1996 a doctor in Michigan
was suspended after conspiring with a home infusion company and
misdiagnosing Lyme patients. In 2000 a study described the death of an
anonymous woman from complications arising from treating unsubstantiated
Lyme with antibiotics.

In Connecticut Dr. Charles Jones, a pediatrician, is under investigation by
the state medical board for prescribing, over the phone, antibiotics for
chronic Lyme to two children in Nevada, a desert state with few ticks.
Jones, who pulled up to a June hearing in a stretch limo to the cheers of
fans, has testified that he did not finalize a Lyme diagnosis until he saw
the children in person. Since the hearings began, more upset patients have
joined the action against Jones. Blumenthal, however, has criticized the
medical board for its investigation.

Mainstream doctors say their guidelines are based on scientific evidence. An
early study identified 25 patients with gallstones or bile blockage
resulting from antibiotic treatment of unsubstantiated chronic Lyme. A more
recent study of infused antibiotics published in the New England Journal of
Medicine was cut short after Lyme sufferers with persistent symptoms did not
respond to a course of antibiotics any better than they did to a placebo.
One patient getting antibiotics had a pulmonary embolism; another had
gastrointestinal bleeding.

Another paper in the Annals of Internal Medicine calls chronic Lyme a
"functional somatic syndrome," similar to other nebulous ailments like Gulf
War Syndrome, chronic fatigue and fibromyalgia. Another study in the same
journal found that 60% of Lyme disease patients lacked any evidence of
previous or active Lyme infections. Some of these patients suffered from
depression, arthritis or other diseases. "There are lot of people who have
fatigue or musculoskeletal pain. We want to help them but not with long-term
antibiotics," says Dr. Gary Wormser, an infectious disease expert at New
York Medical College who helped write the guidelines that prompted
Blumenthal's attack. After the latest idsa guidelines came out in November,
Wormser and his Valhalla, N.Y. lab were the target of a protest attended by
hundreds of chronic Lyme patients and supporters; one sign said "Wormser
Lies Š Patients Die."

Many of the chronic Lyme patients are upset that their insurance companies
won't cover unlimited treatments. WellPoint will pay for only four weeks of
IV antibiotics, citing published peer-reviewed studies. But science is no
match for the Internet, where Lyme patients swarm chat boards to bemoan the
persecution of their doctors and egg on politicians. Some celebrities have
joined in the fray, such as novelist Amy Tan and Daryl Hall of rock duo Hall
and Oates, both of whom say they suffer from chronic Lyme.

Tan's doctor is Raphael Stricker, president of the International Lyme &
Associated Diseases Society, which represents chronic Lyme doctors and
patients. Stricker's San Francisco clinic also advertises its ability to
treat obesity, infertility, erectile dysfunction and AIDS. In 1990 Stricker
was forced out of UC, San Francisco after the school claimed he falsified
data in what had been a seminal AIDS study. Before he discovered Lyme he
spent two years as associate medical director at a penis enlargement clinic.

Stricker and many of his chronic Lyme allies send their blood tests to a
California lab called Igenex, which was once investigated by Medicare and
the state of California for pumping out too many positive tests. Nick S.
Harris, chief executive of Igenex, says he passed both investigations
easily, but in 2001 the federal Office of the Inspector General put Igenex
on a list of noncompliant labs. It paid fines totaling $48,000. Harris says
his firm has had no recent brushes with regulators. Harris says that his
tests are more sensitive than ones given by lab giants Quest Diagnostics and
LabCorp, yielding positive results 25% of the time. The big national labs
typically return positive results 8% of the time. He acknowledges that his
results are more open to interpretation, which could facilitate more
positive diagnoses. "Patients, because of the Internet, have become my best
salesmen," Harris says.

Jemsek, who in 2005 collected $6 million from Blue Cross Blue Shield of
North Carolina, is still practicing, having declared his earlier practice
bankrupt. He opened a new cash-only practice, spending $8 million on a
building with a waterfall and grand piano. On the Internet patients exchange
tips about how to keep seeing him. In his statement to the medical board
after the stayed suspension of his license, Jemsek, who declines to be
interviewed, said: "I've got 400 letters of support here, many single-spaced
and several pages long."

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