Twin epidemics of Lyme and autism

Some feel the battle misses the point — that antibiotics just drive the devilish Lyme spirochetes further into the body.

by Tami Duncan — 

Lyme is the fastest growing infectious disease in the U.S. It is also one of the most politically fraught, with autism a close second.

“The patients and parents with autistic kids are ahead of the government’s advisory agencies on this,” said Dr. Rick Melde, a Wickenburg, Ariz., family physician. “The number of people with Lyme and the number of children with developmental disorders is growing, yet the medical establishment and the government have been reluctant to take action.”

The epidemics of Lyme and autism are snowballing and tearing families apart. “Most autistic kids have Lyme disease because most doctors do not treat Lyme, by first knocking it down enough that the white blood cells can mount an attack and give you something to measure when you test for it,” said Dr. Dietrich Klinghardt of Washington state. “That is why it is unknown.”

Lyme is often officially described as a tick-borne disease, hard to catch and prevalent only in the eastern United States. But patients and doctors in the trenches paint a very different picture.

At the annual Lyme-Autism Connection Conference in California in June 2008, doctors presented studies revealing how Lyme is now transmitted in every state by mosquito bites, fleas and gnats, and has been found in human semen, vaginal fluid, tear ducts and mothers’ breast milk.

Lyme disease, like its cousin syphilis, is called the “great imitator,” because symptoms can be all over the lot. “Lyme can mimic or contribute to more than 350 illnesses,” said Dr. Lee Cowden, a Lyme specialist in Chandler, Ariz.

According to author Stephen Buhner, Lyme bacteria consume collagen tissues, so that the infection first goes to joints and to the brain where the body has big stores of collagen. This is why research is showing that 20 to 30 percent of children diagnosed with autism are, in fact, positive for Lyme disease.

Testing for Lyme disease is difficult. First, most doctors don’t even think to look for it because they are told it is rare. Second, the two tests most commonly used by conventional medicine aren’t sophisticated enough to realiably detect it, so the false negative rate hovers upwards of 65 percent. Then there are the co-infections, a nasty bunch of bacterial siblings that require separate testing and treatment.

Treating Lyme is also difficult. It is not suffient to just treat the symptoms; doctors must treat the cause. A political battle of epic proportions has raged between those who feel long-term antibiotics are the answer, and the doctors of the Infectious Disease Society of America (IDSA) who want to deny long-term use.

IDSA guidelines are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment and other medical care, and they strongly influence physician treatment decisions nationwide. The battle recently escalated to an antitrust investigation. In May 2008, the Connecticut Attorney General scolded IDSA for its “good ol’ boy” style of operating, with allegiances to undisclosed financial interests and its failure to listen to divergent views.

Some feel the battle misses the point — that antibiotics just drive the devilish Lyme spirochetes further into the body.

One of the most divergent views questions whether there is such a thing as chronic Lyme. IDSA, for example, states that Lyme runs its course in a couple of months and is then over, done and gone. But patients and doctors say that Lyme is almost impossible to get rid of, with many people suffering life-long debilitating symptoms — even death.

“One of the most foolish things humans did was to assume that bacteria were not intelligent,” Buhner said. “Bacteria can actually analyze ways to deactivate an antibiotic and give that info to other bacteria they encounter. Lyme generates scores of alternate forms of itself to maximize survival.”

How widespread are the twin epidemics of Lyme and autism? The CDC tells us that one in 150 children have autism and that Lyme pops up at the rate of 20,000 reported cases a year. At the Lyme-Autism Connection Conference, experts suggested that 70 percent of the population has Lyme, and that it is being transmitted to children through congenital transmission, possibly through DNA.

Lyme is an opportunistic disease. Some people may have it but appear to be without symptoms because their immune systems are strong, keeping it under control. However, if life deals them a stressful blow — like a divorce or surgery — out it comes like an ugly genie from the bottle, and life is never the same.

In many other cases, people may think they have a chronic disease, but it’s really the great imitator at work. Various studies suggest that the majority of people diagnosed with chronic fatigue, fibromyalgia, Parkinson’s, rheumatoid arthritis and other diseases may actually have Lyme.

The subject of Lyme disease is shrouded in the mysterious stuff of the X-Files because it is reported to have escaped from a military lab on Plum Island, New York. Investigative journalist Michael Carroll, author of Lab 257, spent seven years piecing together how the events of post-World War II led to Plum Island’s secretive task of developing biological warfare. He postulates that Lyme disease migrated off the island by way of ticks. It first showed up as a rash of juvenile arthritis cases in a town called Lyme, Connecticut. Eventually, those ticks hopped a ride on birds and gradually spread the disease to the world.

“I’ve seen a couple of children who never left the Phoenix metro area who have Lyme,” said Warren Levin, M.D., a Lyme-literate doctor. The Arizona State Health Department suggests there are no deer in the Valley, but a family of deer was seen crossing the road at Frank Lloyd Wright and Via Linda in Scottsdale. The Arizona State Health Department’s official position is that there is no Lyme in Arizona. However, the patients, caught in the middle of a political whirlwind just want to get better.


Tami Duncan is the co-author of The Lyme-Autism Connection and president and co-founder of the LIA Foundation.

Reprinted from AzNetNews, Volume 27, Number 4, August/September 2008.

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