Re: Lyme docs & Igenex get slammed in Forbes

[Guest guest]

That's interesting. Personally I think it's pretty silly for IDSA to be

poked at by the Connecticut attourney general's office for issuing

treatment guidelines. To me that smacks of militancy. I highly doubt

that IDSA is anything other than a bunch of doctors trying to do a good

job (not that they have succeeded in this case).

As for this Whelan guy, pffffffffft.

<pennyhoule@...> wrote:

>

> Somebody has sent me another email sure to cause controversy. An

article in the March episode of Forbes, written by Whelan.

>

> Who's Whelan? He sounds familiar, but a google search didn't

reveal much related to health or lyme disease other than this article.

>

> The lymies here have probably already read it but just in case you

haven't, here it is.

>

> penny

[Guest guest]

Yep read it already.

Thius type of thing pretty much is constantly going on.. it's called

the " Lyme Wars "

Barb

>

> Somebody has sent me another email sure to cause controversy. An

article in the March episode of Forbes, written by Whelan.

>

> Who's Whelan? He sounds familiar, but a google search

didn't reveal much related to health or lyme disease other than this

article.

>

> The lymies here have probably already read it but just in case

you haven't, here it is.

>

> penny

>

>

>

>

>

> Health

> Lyme Inc.

> Whelan 03.12.07

> Ticks aren't the only parasites living off patients in

borreliosis-prone areas. Three years ago , a 30-year-

old mom in Huntersville, N.C., was constantly fatigued and prone to

colds. Her internist referred her to Dr. ph 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 ' arm and every two weeks for a

year and a half sold 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. 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 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

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. , 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. , 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 . 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 ls 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. 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 … 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. , 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. says his firm has had no recent

brushes with regulators. 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, " 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. "

>

> http://members.forbes.com/forbes/2007/0312/096.html

>