Living with Lyme

By Bill Sontag
The News-Herald
December 29, 2003

Lyme borreliosis is focally endemic in North America, Europe and Asia, and is probably the most common tick-borne bacterial disease in the world. In the United States, Lyme disease accounts for more than 90% of all reported cases of vector-borne illness.

—World Health Organization

Carman Wiese distinctly remembers seeing her proof-positive symptom off Lyme disease, the “bull’s-eye rash” more than 25 years ago when she lived at Eagle Lake, Texas.

Now 59-years-old, Wiese, businesswoman, has lived more than half her life with excruciating pain and perplexing, sometimes crippling, symptoms. Finally, she can lash the pieces together as the complex mischief of a nasty microorganism called Borrelia burgdorferi, or simply Lyme disease.

Like most youngsters raised in rural Texas, Ed Wiese remembers being “covered up with ticks when I was a kid.” But then in his youth Wiese also developed a heart murmur. He is less sure of how he got the disease than is his wife. Clearly, Lyme is no longer considered a rarity, as evidenced by the World Health Organization (WHO) statement on the website of the U.S. Centers for Disease Control (CDC), www.cdc.gov. But the CDC and Ed Wiese, businessman, do not agree on the limits of transmission accepted by the government.

CDC is unequivocal and emphatic that the infectious spirochete of the Borrelia bacterium can only be transmitted from a tick: “Lyme disease bacteria are NOT transmitted from person-to-person. For example, you cannot get infected from touching or kissing a person who has Lyme disease, or from a health care worker who has treated someone with the disease, or by sexual contact.” That last caveat is vigorously disputed by the Wieses, at least two other husband-wife couples in Del Rio who are diagnosed with Lyme disease, and many health professionals and Lyme research organizations around the world.

Citing sexual contact and placental transmission during pregnancy, Ed Wiese asserted, “You don’t have to get bit by a tick to have Lyme disease.”

He never saw the confirming “bulls-eye rash,” and noted that it usually appears as something too big to miss, and notes that only a small percentage of Lyme patients ever display it. He doesn’t know if he contracted it from Carman, and even queried, “Could mine have been passed from my mother and father?”

Lyme disease discussions, introduced in last week’s “Health On The Borderline,” are flavored with many impassioned, widely diverging opinions, few undisputed facts, and thus are tinged with more than a little controversy. The disparity of opinions is strongest among medical professionals who seem sharply divided on the characteristics of Lyme infection, diagnosis and treatment. While doctors and researchers argue, patients live with not only the confusion, but the debilitating symptoms as well.

The Lyme Disease Association (LDA) of the Brandywine Valley, an affiliate of the national LDA, published a 2002 checklist of problems emanating from the malady that patients should recall for possible diagnosis. They range from extreme fatigue, memory loss, persistent/severe headache and mood swings to diagnoses of multiple sclerosis, Parkinson’s, lupus, fibromayalgia, Crohn’s disease and seizures or strokes. Among patients interviewed in Del Rio, joint problems, swelling, tendonitis, cracking joints, confusion or “brain fog,” and severe depression seem to be commonly reported.

Ed Wiese described his past frustration with life in general, a byproduct of severe and chronic pain in his ankles: “You wonder ‘What the hell am I doing this for?’” But the treatments (theme of next week’s “Health On The Borderline” seem to be helping — for now. “I haven’t felt that pain for the last year and a half,” he declared with evident, though cautious relief.

Carman Wiese is more afraid of a return (as is common with Lyme) of the pain that has thoroughly disrupted her life. And the treatments of antibiotics were not initially encouraging to Carman. “I cannot describe to you the pain that came when I started the antibiotics; I now understand why someone with that kind of pain considers suicide,” she divulged. The multiple bouts of pain Wiese experienced were not precisely in her joints, but appeared as “trigger points” in arms and legs where tendons adhere to joints. “It felt as if someone was hitting you on a bruise with their closed fist,” she declared.

Andrea Nieto, 34, now lives in San Antonio, but her parents, still living in Del Rio, have both been diagnosed with Lyme disease as have she and her husband, Clint. Andrea reported Nov. 26 that she may have contracted Lyme while camping with her family at the age of 14 along the coast of northern California, a known “hotspot” of Borrelia-bearing ticks. Her experience has included an ample array of illness, pain, and injury. Nineteen years ago migraine headaches routinely put her to bed, followed by seizures beginning two years ago. She dropped 30 pounds of body weight from a frame that was already spare, and completely lost the use of her left arm for two years.

Nieto explained that she went through periods of sleeplessness for days on end, experienced hallucinations, severe loss of memory and vocabulary. She saw doctor after doctor, none of whom were able to pin down the problem from the dizzying array of problems. After four days of not being able to get out of bed, she was taken to a San Antonio primary care clinic where a physician brushed her off: “Oh, you’re just having a panic attack.” Other doctors accused her of fabricating the symptoms, and dramatizing their severity, even though a San Antonio doctor detected a heart murmur in May 2001. That too was brushed off. “They just didn’t care,” Nieto chafed.

Then she was introduced to Houston, Texas aerospace medicine and preventive medicine physician Dr. William T. Harvey, and things began to change. He is admired with near reverence by Lyme patients in Del Rio, most of whom are receiving diagnosis (through IGeneX Laboratory in Palo Alto, California), treatment and advice from Harvey. Nieto received her confirmed diagnosis from Harvey Feb. 14, and exclaimed, “Valentine’s Day was the best ever. I was just jumping up and down for joy.”