Dr. Bernard Raxlen arrived at Manhattan's glamorous Gotham Hall on a cool autumn night in 2008 to receive a humanitarian award.
With a lime-green Lyme disease advocacy ribbon pinned to his dapper black suit, Raxlen joined partygoers sipping martinis below a stained-glass skylight bigger than most New York City apartments.Money was in the air. The "Unmask A Cure" gala invitation listed Goldman Sachs, New York Private Bank & Trust and Marquis Jet as sponsors. The event raised money for the Turn the Corner Foundation, a Lyme nonprofit on whose medical advisory board Raxlen sat.
The scene was light-years from the institutional brick building where the Connecticut Medical Examining Board was considering disciplinary action against Raxlen for the fourth time in 10 years. Raxlen had been accused of telling a woman dying of Lou Gehrig's disease that she had chronic Lyme disease, an illness that might not even exist.
Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.
But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars.
Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter.
These days, advocates can raise big money to "Unmask A Cure" for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes. Legislatures around the country are passing laws to prevent medical boards from disciplining doctors who treat what they consider chronic Lyme with therapies that clinical trials have shown are dangerous and don't work.
In October, a New Jersey congressman entered into the Congressional Record a statement from three nonprofit Lyme groups chastising the federal Institutes of Medicine for a "pervasive lack of objectivity" when it comes to chronic Lyme.
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.
'It is all Lyme'
Kimberly Frank describes herself as always "going, going, going" before she got sick about 10 years ago. At the time, she was running two bridal shops, raising her four children and caring for two foster children.
Then the Ingleside mother developed crippling fatigue and an array of symptoms that baffled doctor after doctor. She says a physician diagnosed her with multiple sclerosis. Later, a different one told her she had Lyme disease.
To feel better, Frank says, she has taken up to 76 pills a day. She says she has been on oral or IV antibiotics for three years. Two of her children also have Lyme, she says, and have been on antibiotics.
Frank, who runs a northwest suburban Lyme support group, told the Tribune in an interview that she suspects Lyme is "man-made" and was developed at the federal Plum Island Animal Disease Center in New York.
Frank says Lyme is tragically underdiagnosed, that tests endorsed by the Centers for Disease Control and Prevention are unreliable, and that research into the disease will unlock many mysterious and devastating illnesses.