Lyme Disease: A Modern Tuskegee ExperimentAuthor: Alix Mednauseam
Published: February 10, 2011 at 4:30 pm
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The Chicago Tribune recently ran an inflammatory article disparaging chronic Lyme Disease patients.
You know,
the poor saps who were out doing something healthy, like hiking, and were bitten by an infected tick. Insurance companies deny many of them
treatment based on technicalities like notoriously inaccurate blood tests, living in the wrong county, failure to save the infected tick, or because guidelines incorrectly dictate that all cases of Lyme can be successfully treated with a few weeks of antibiotics. Two Lyme groups are warring over the issue right now - the Infectious Diseases Society of America (IDSA) and the International Lyme and Infectious Diseases Society (ILADS).
The Tribune article sided with the politically-compromised IDSA, spawning a torrent of angry comments.
Patients whose cases of Lyme Disease were missed, or those who relapse after the standard treatment of a few weeks of antibiotics, need months to years of antibiotics to overcome debilitating symptoms that frequently leave sufferers disabled, jobless, bankrupt and lacking disability or medical insurance.
The crazy thing is that we know what happens to patients with a spirochetal illness like Lyme when it goes untreated-- severe pain and neurological symptoms.
Do we not remember syphilis or the infamous Tuskegee syphilis experiment?
In the 1940s we discovered the cure for syphilis, a sexually-transmitted spirochetal illness.
Over the next twenty-five years, we denied penicillin to a group of syphilis-infected African Americans.
We stood by idly, cruelly – in the name of science - as the spiral-shaped bacteria drilled deeper into the central nervous systems of the 400 people in the Tuskegee Syphilis study.
Due to insurance
companies' desire to contain costs, today hundreds of thousands of Lyme Disease patients are denied antibiotics. Fewer than 30,000 cases of Lyme Disease will be correctly diagnosed and treated each year.
The CDC acknowledges that the disease might be under-diagnosed by a factor of ten, leaving hundreds of thousands untreated.
Of those who do get a few weeks of antibiotics, 95% will be deemed “cured,” however, more than a third will relapse.
Both sets of patients – the undiagnosed and the relapsed – suffer progressive disabling illness.
They become more difficult to treat as the spirochete becomes entrenched in the least vascular areas of the body, robbing patients of the ability to think, to remember, to move without pain, to sleep, and to work.
Move over Guantanamo torture techniques, incorrectly treated Lyme is the biggest torture of all.
Though tests recognized by ILADS-- but not by the CDC-- do show evidence of Lyme infection, undiagnosed and relapsed patients are told they do not have Lyme Disease and are routinely denied antibiotics.
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To put this into perspective:
If you had syphilis and your symptoms came back after standard treatment, or if you knew you'd contracted syphilis but were denied treatment, do you think you'd be satisfied with your doctor, your insurance company, or with your destroyed life?
It's not the 1930s. This is not Tuskegee, yet there is an egregious crime occurring as if the clock has been turned back by almost a century. Today's crime is not racial, but political.
A political crime to limit diagnoses of chronic Lyme to save insurance companies money and to favor Lyme disease vaccine patent holders.
Eighty percent of the Tuskegee patients went around the system to self-treat with toxic mercury and arsenic injections developed in the 1800s. These people were sick and needed treatment.
Lyme patients lose their jobs and insurance and scrape together what they can to pay for antibiotics at the rate of $2,000 - $12,000 per month.
A disseminated infection requires up to three years of treatment. Do the math.
When the money runs out, they seek alternative treatments that can be equally effective, many of which are also less costly.
Lucky Lyme patients test CDC-positive, are treated with a few weeks of antibiotics, with the cost covered by their insurance, and are among the two-thirds who do not relapse.
The unlucky may as well be African-Americans in Tuskegee in the 1930s.
This modern spirochetal crime is as morally repugnant as the Tuskegee Syphilis Experiment but on a much bigger, growing scale.
The Tuskegee Experiment ended in the early 1970s when a doctor alerted the media that it was still going on, twenty-five years after the cure was discovered.
It was easy (cheap) for our government to stop the experiment at that point, as most of the 400 syphilis suffers were dead.
The expense of chronic Lyme is a burden to the hundreds of thousands of suffering patients, an expense insurance companies do not want to take over.
Shame on the Chicago Tribune and other highly-regarded newspapers for running a story so demoralizing and socially damaging to those already suffering with a debilitating physical illness.
Alix is a Founding Editor of SpiroChicks, a Lyme lifestyle blog.
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