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Whelan

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http://blogs.forbes.com/davidwhelan/2010/12/08/chronic-lyme-disease-exemplifies-\

whats-wrong-with-playing-doctor-on-the-web/

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Chronic Lyme Disease Exemplifies What’s Wrong With Playing Doctor On The Web

Dec. 8

2010 - 9:48 pm |

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By DAVID WHELAN

Today the Chicago Tribune published a terrific story about the frustrating world

of Chronic Lyme Disease.

Chronic Lyme is controversial. Mainstream infectious disease doctors

believe Lyme Disease, which is transmitted by ticks, is curable with a

short dose of antibiotics. A renegade group of Lyme specialists

disagrees. They argue that Lyme, especially if left untreated, can

spiral into a chronic condition characterized by neurological and

fatigue symptoms. They prescribe long-term antibiotic treatments, which

they often sell directly to patients. Angry patients who believe they

suffer from Chronic Lyme, and are often denied coverage by their

insurance companies, have added rancor and politics to the scientific

debate. I wrote about the topic back in 2007.

Three and a half years later, the Trib story is worth a careful

reading. It’s clear that despite the work of mainstream doctors to

educate the public and occasional attempts to crack down on the most

dangerous Lyme doctors, nothing’s changed.

So-called “Lyme literate†docs are still over-diagnosing and

over-treating the disease. Sometimes, as the story discusses, patients

have died from the treatments or been sickened. The treatments leave the

entire population vulnerable to drug-resistant bugs. The bills for the

antibiotics drive up the cost of health insurance.

A bigger point made by the writers is that Chronic Lyme is what

happens when distrust of big institutions (organized medicine,

government, drug companies) among patients collides with the Internet,

an information-free-for-all. Remember the New Yorker cartoon that had a

picture of a Web-surfing pooch captioned “On the Internet Nobody Knows

You’re a Dog� Well on the Internet it can be hard to tell if health

information is credible or not. Here’s how the Trib writers, Trine

Tsouderos and Callahan put it:

Fueled by suspicion of

doctors and drug companies, Americans are flocking to alternative

healers promoting risky treatments and unproven cures. The Internet

connects pseudoscientists with the desperately ill, trumpets

I’ve-been-cured testimonials and often dismisses the results of clinical

trials as the work of unsympathetic doctors corrupted by Big Pharma

money.

Google “ALS†and

“treatment†and results include a site touting deer antler therapy for

amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Google “cancer†and “alternative treatments†and you’ll find a

“grape

cure,†among others. Message boards are packed with patients trading

treatments, often including detailed prescription information.

In this world, skeptics are vilified as

part of a vast conspiracy involving tainted government agencies, drug

companies, the media and conventional physicians. Scientific studies are

cited but are invariably of poor quality or misinterpreted. Patients

are directed to small specialty labs offering tests that can be

misleading.

And advocacy groups are aggressive and

sophisticated about spreading their messages, raising money and

influencing state and federal lawmakers.

There is no better example than the world

of chronic Lyme, a disease that might not exist and one for which the

most common treatment, months or years of antibiotic use, poses a threat

to us all by sapping the power of those drugs to fight disease.

Follow me on Twitter. And if you have a story idea e-mail me

at dwhelan@...._______________________________________________

http://www.eptrail.com/ci_16799709?source=most_emailed

Lyme Disease makes lemon of a good lifeRebekah Steers struggles; benefit on

Friday at s Lake LodgeBy Juley Harvey Trail-GazettePosted: 12/07/2010

02:25:55 PM MST

Who would think that a

teeny tick could transform your whole life, and not in a good way? Ticks

transmit lyme disease, a little-understood and often misdiagnosed

phenomenon that turns life into lemons for those who suffer from it.

More people are afflicted with the disease than is known -- one website

reported there are more than one billion cases of lyme disease

worldwide. It has come home to Estes Park, with 27-year-old Rebekah

Steers, daughter-in-law of and Karin Steers of the Anniversary

Inn. There will be a silent auction benefit Friday night at s Lake

Lodge, from 4 to 9 p.m., to help with Rebekah`s medical bills. (See the

story in the Estes Inside and Out section on Friday).

Rebekah, married three years to Graham Steers, was finally diagnosed

with lyme disease this summer, after suffering symptoms affecting her

whole body for a long period. She and Graham were forced to move from

Chicago to Estes Park, after she became so incapacitated she could no

longer work or care for herself.

Rebekah writes in her blog, " Lyme brought me fistfuls of

fears.... It would be unconscionable to condemn anyone to suffer this

illness. I cannot even fathom the weight of passing it to a child. "

But what is " it " ? Lyme disease begins with a bite from an

infected tick. The disease has three phases: early localized, early

disseminated and late persistent. Rebekah is in the third stage --

because she wasn`t properly diagnosed until her chiropractor found the

disease that fit her symptoms. Lyme is difficult to diagnose and there

is resistance within the medical community to finding correct treatment.

Rebekah writes, " ...I was struck dumb when I found out that I had been diagnosed

with a controversial illness....

" ...Chronic lyme, the kind

that greets me and so many others every morning, is a highly political

disease. For that reason, it isn`t well-known. Because of that status,

insurance doesn`t

Rebekah Steers was correctly diagnosed in July 2010. Since beginning

treatments, she is seeing some improvement for the first time in over a

year.

(

H. Hahn

)recognize it and won`t pay for its treatment.... And

yet lyme is all over the place.... It is out there in epidemic

proportions. And it is spreading. "

The way it spreads is by the bite of an infected lyme tick. The name

" lyme " derives from cases in Lyme, Conn., in 1975, when a group of

children began suffering from arthritis, all found to be caused by tick

bites. Lyme ticks are tiny, spideresque creatures inhabiting woodland

and other grassy areas, feeding on the blood of birds and mammals.

Ticks attach themselves to food sources that rub against bushes,

plants and grass. They often move to a warm, moist location, such as

your head, neck, armpits, ankles or groin. They may crawl on your skin

up to an hour before biting. Blacklegged ticks or deer ticks, which

carry lyme disease bacteria, are usually no bigger than the head of a

pin.

Some people who develop lyme disease first have a rash -- usually

circular, enlarging over time -- at the site of the tick bite (Rebakah

didn`t).

Rebekah writes that in the months following her infection, she

" laid down and have not worked or risen from bed without pain since....

heavily medicated, confined to a bed or a wheelchair, and suffering

chronic pain -- I saw many specialists, with many different prognoses

and diagnoses..... Now that I have the proper diagnosis, I am seeing

some improvement for the first time in over a year. "

Along with physical easing of symptoms, fears are also allayed.

Because of the tremors, shakes and pain confining her to bed, Rebekah

has feared she would never feel useful again. Lyme is a cousin to

syphilis and Rebekah has feared infecting her husband. However, she said

that " all of these fears could be quieted with sufficient research and

knowledge; there is an absolute need for more research with respect to

lyme. "

Rebekah writes that " through two years of treatment, a Lymie

friend has whittled down her list of 26 symptoms to two, " including

persistent, devastating insomnia. Rebekah also suffers from insomnia,

reporting that she read the parasite babesia -- one of the free riders

that accompanies a lyme tick bite -- is most active at night, a

contributing factor to insomnia in hosts.

Articles in the " ls of Internal Medicine " attribute

" long-term impairment of functional status " to exposure to lyme disease.

Early stages of the disease may include flu-like symptoms, with

or without the rash. Victims suffer from a lack of energy (the most

common early symptom); headache and stiff neck; fever and chills; muscle

and joint pain; and swollen lymph nodes.

Within one to four months of infection, if the disease is not

detected and treated, the infection may affect the skin, joints, nervous

system and heart. Symptoms at this stage include: tiredness; additional

skin rashes in several places on the body; pain, weakness or numbness

in the arms or legs; inability to control the muscles of the face --

paralysis of facial nerves; recurring headaches or fainting; poor memory

and reduced ability to concentrate; conjunctivitis (pink eye) or

sometimes damage to deep tissue in the eyes; occasional rapid heartbeats

(palpitations) or serious heart problems.

If still undiagnosed and untreated, lyme disease proceeds to

damage the joints, nerves and brain, perhaps even years after infection.

Symptoms at this stage may include: swelling and pain in the joints,

especially in the knees; numbness and tingling in the hands, feet or

back; partial facial nerve paralysis; neurologic changes, including

problems with memory, mood or sleep, and sometimes problems speaking;

and chronic lyme arthritis.

The Truth about Lyme Disease: Undercounted and Underfunded 

http://news./s/prweb/20101208/bs_prweb/prweb4868004_1;_ylc=X3oDMTEwamIz\

MDI4BF9TAzIwMjM4Mjc1MjQEZW1haWxJZAMxMjkxODkyNDUx

" Horses are God's Apology for Men "

Let us awaken then, and envince a different spirit,---a spirit that shall

inspire the people with confidence in themselves, and in us -- a spirit that

will encourage them them to persevere in this glorious struggle, until their

rights and liberties shall be established on a ROCK. " ---- ,

1777 http://percheronridersdressagejourney.blogspot.com/     

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