Monday, July 21, 2008
Under our skin
By James Swan
In the early 1970s, a Connecticut mother, Polly Murray, called attention to clusters of mysterious "juvenile arthritis" — an illness that manifested as aches, pains, fever, fatigue, joint problems, etc. which at that time had an unknown cause — among New England children. Ultimately the "juvenile arthritis" clusters were named "Lyme Disease," after Old Lyme, Connecticut, where the problem was first identified.
In 1981, Dr. Willy Bergdorfer discovered that Lyme Disease was caused by a microbial infection, and those microbes were carried primarily by the deer tick. Hence the Latin name for the spirochete "Borrelia burgdorferi." It has since been reported in all 50 states, China, Europe, Japan, Australia, and the parts of the former Soviet Union.
No one knows how long this disease has existed, but as awareness has grown, reported cases began to rise. There are towns in deer-rich New England where half the residents or more have or have had Lyme Disease. And it has spread across the US, thanks in part due to the whitetail deer herd mushrooming to more than 30 million, the largest in recoded history. Today, there are at least 20,000 cases of Lyme Disease reported each year in the US, and the CDC admits that there may be 10 times that many. Part of the problem is diagnosis.
It takes time for a tick to attach to a person, and for the microbes to be transmitted — I have been told 12 hours before sufficient microbes have been transmitted to infect someone, but don't quote me on that. The sooner you get the tick off the better. Only about half the ticks may carry Lyme, the nymph stage is the principal vector and not everyone who gets bitten will become infected, but after you see this movie, you will not want to risk getting Lyme Disease.
If you do get a tick bite, one symptom of Lyme Disease is a bulls-eye red rash that can appear as soon as three days or up to a month later. However, only about 20% of people infected may get the rash.
Fever, fatigue, joint pain, and body aches are some of the initial symptoms.
If treated with antibiotics (e.g., doxycycline, amoxicillin, or cefuroxime axetil) during this early stage, most people are cured. But what happens if you don't know that a tick has bitten you and the disease gets established in your body? Or worse yet, a tick may be carrying more than one disease, or doctors fail to recognize Lyme Disease.
A new feature-length documentary, "Under Our Skin: The Untold Story of Lyme Disease," tells a powerful of story that gets under your skin and into your heart as you watch half a dozen people go through Lyme Disease hell, including: new bride Mandy Hughes, who nearly dies; Elise Brady-Moe, a Lyme disease carrier who is terrified that her newborn son will test positive for Lyme; Dana, an event producer for U2; and Ben Patrick, who might have been a major league baseball player if he had not contracted Lyme.
Part of the problem with Lyme Disease is for years the medical establishment has said it was only an acute microbial infection. This film convincingly argues that it may also have an insidious chronic form; a progressive degenerative disease that can cause painful neurological symptoms and arthritis, as well as other conditions that may be diagnosed as ALS, MS, Alzheimer's, Parkinson's, psychosomatic illness, and a number of other mysterious serious and sometimes fatal diseases that have no real known causes or cures. Could Lyme even be a cause of these diseases?
A key problem with Lyme is diagnosis. According to Dr. Andrew Weil, "in 2005 both the FDA and the Centers for Disease Control cautioned against tests for Lyme disease used by some commercial laboratories... Neither the accuracy nor medical usefulness of these tests has been adequately established. Legitimate diagnostic testing for Lyme disease should begin with an enzyme immunoassay. If you test positive or the results aren't certain, the next step is a standardized Western immunoblot assay."
The case for the existence of chronic Lyme Disease is powerfully made in "Under Our Skin." We see many people seriously ill, hear stories of hundreds of thousands of dollars spent on treatments that do not work, and learn of others who have died from what their survivors believe was Lyme Disease. The stories of suffering are interwoven here with some gorgeous nature photography that yields a tapestry of feelings that moves the viewer to ask serious questions about modern medicine.
In all fairness, most doctors are not researchers. Diagnosis is based on tests, experience and gut reactions. Each person is unique. Keeping up with new discoveries is not easy. In a situation like this labeling all non-believers as bad, stupid or evil serves no purpose.
The lack of a cure for seriously ill people is what should move sufferers and their families to search, and there are many courageous people in this film. One of them is Connecticut Attorney General Richard Blumenthal, who takes on the panel of physicians of Infectious Disease Society of America that developed the guidelines for diagnosis and treatment of Lyme Disease. He finds many conflicts of interest, and insurance companies that do not want to pay for lengthy treatment of a disease that some say does not exist.
Aside from those suffering from the disease, we also learn about brave doctors who treat chronic Lyme Disease patients and risk having their licenses revoked, ultimately suggesting that the state of Lyme Disease treatment is as much a political condition as a medical one.
One of the brave ones is pathologist Alan Macdonald, who has had to create his own laboratory in his basement to do his research. From years of open-minded hard work, he reports that Lyme may be a biofield disease, which explains why it can be chronic. Analyzing brain tissues of seven people who died of Alzheimer's, he finds all tested positive for Lyme Disease. Those discoveries could have dramatic ramifications for modern medical diagnosis and treatment of more than Lyme.
A Lyme Disease vaccine, called Lymerix, has been pulled off the market. Others are being studied, but presently there is no vaccine to protect you from getting Lyme Disease. An ounce of prevention is worth many pounds of cure.
I'm not a big DEET fan, but tick repellants are out there. Use them. Check for ticks every time you have been outside, or when you pet the dog who has just come inside. Wear long-sleeve shirts, light-colored clothing and tuck your cuffs into your socks when you are in wooded or brushy areas. I've found that lightweight silk long underwear also seems to help keep the little critters off your skin.
Reducing the populations of animals that serve as vectors for ticks — mice, wood rats, and deer — can also reduce the chances of transmission. So, deer hunters, get to it. But take care. Wear elbow length rubber gloves when cleaning critters.
If the state of Lyme Disease is in reality a political and economic matter more than a medical one, drastic action needs to be taken. Lives are at stake. This film is a wake-up call that should reverberate through the halls of Congress, as well as doctors' offices and research facilities across the US. Hopefully it will lead to definitive research on Lyme that will save lives, possibly even give us clues about some maladies that have no known cause.
Three years in the making, "Under Our Skin" is currently making the rounds of festivals, where it is winning awards. To get a copy go to the Open Eye Pictures website, where they can be purchased. It should be aired at outdoor sports clubs, conventions and expos across the U.S. It might save some lives.
For more information about Lyme Disease see: The Lyme And Associated Diseases Society.