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Chronic Fatigue Syndrome/ME
December 19, 2003
By HEATHER BOERNER
Sentinel staff writer
Aurora Solomon has been to hell and back — she lost her home, lost her job and had to file bankruptcy — all because of a Lyme disease infection she says went misdiagnosed for years.
Now the Aptos resident and about 100 other members of the county’s Santa Cruz County Tick-Borne Disease Support Group are trying to organize local doctors to attend a meeting in which a Lyme disease expert teaches local physicians about the disease. Solomon is trying to make sure what happened to her doesn’t happen to anyone else.
"I went from making a six-figure salary to being brain-dead; that’s how I felt," she said. "And it happens all the time. You wouldn’t believe the calls I get from Reno, Sacramento, Watsonville, from people saying, ‘My daughter, my son, my cousin, my wife, my friend got bitten by a tick and the doctor just told them that Lyme disease isn’t a problem.’ They ask me where they can go, what doctors they can see, and I don’t have anyone I can refer them to in Santa Cruz County."
Local officials are starting to realize Lyme disease is a problem. Fritzi Nelson, county Disease Control manager, said eight cases have been reported in the county this year, one more case than last year.
"That’s high for us," she said. But in relation to the communicable diseases reported to her office, the number isn’t very high, she said. So far this year, Chlamydia is the most frequently reported disease, with 291 cases, followed by Hepatitis C at 151 cases. More people have reported salmonella poisoning this year than Lyme disease infections.
"If only 1 percent of the cases you see are Lyme disease, it’s not going to be very high on the list of diseases you consider when you go through symptoms," Nelson said.
Local doctors concur. Dr. Arthur Dover, an infectious disease specialist, said in all his years working in the county he hasn’t found a single case of Lyme disease in his patients. And it’s not because he doesn’t test.
"It really isn’t a problem here," he said. "I think there’s more of a Lyme disease phobia here than a Lyme disease problem here. There’s more of a willingness to blame every ache and pain on Lyme disease. But there’s very little documentation to back that up. It does exist here, but it’s at a very low rate."
Penny Jacobi, spokeswoman for Dominican Hospital, said a request has been made to the hospital for what’s called a "grand rounds meeting" between doctors and experts on Lyme disease, but no doctors have advocated for one. Doctors must indicate an interest for such a meeting to occur.
While there are doctors in the county who treat Lyme disease, Solomon’s claims are backed up by a nationally renowned Lyme disease expert and doctor. Dr. Rafael B. Stricker specializes in Lyme disease treatment from his office in San Francisco, but also treats many Santa Cruz County patients.
Stricker believes local doctors think of Lyme disease as an "East Coast problem," and if they treat it, "they generally believe it’s something that can be cleared up with two weeks of antibiotics."
But Lyme disease, a bacteria carried by the poppy seed-sized Western black-legged tick, isn’t so easy to figure out, said Stricker, a hematologist. The disease is most common in the Northeast, but also exists in pockets of the West, including California. It’s most prevalent in areas with large deer or other wildlife populations.
A recent study released in the Journal of Medical Entomology says Lyme disease-carrying ticks are more common in Santa Cruz County than in five geographically similar California counties, and the average proportion of ticks carrying the disease here is three times that of those other counties.
Stricker said the study also shows that in some areas of the county, such as The Forest of Nisene Marks State Park, up to one in every three tick carries the disease.
The usual symptoms are a bull’s-eye rash, which is clear at the center, headaches, arthritis, cognitive disorders, sleep disturbances, fatigue and personality changes. But Stricker said some people never see the rash.
The disease’s symptoms are similar to hard-to-treat syndromes such as chronic fatigue and fibromyalgia, and so is prone to misdiagnosis.
Stricker was one of 17 experts who created new treatment and diagnosis guidelines for the Lyme Disease Association. Stricker also will be participating in a Lyme disease virtual grand rounds with state health department doctors this month.
He said he’d be happy to speak to local doctors about the disease.
"It’s not just all in (the patient’s) head. And if they treat it, they need to treat it aggressively," Stricker said.
When Lyme disease goes undiagnosed, patients could need months of intravenous antibiotic treatment and suffer severe pain.
That’s what Solomon endured once she finally began treatment for Lyme disease in 2000 — four years after she first began experiencing symptoms. An avid weekend hiker in Big Sur and in Nisene Marks for years, Solomon experienced aches, exhaustion and problems functioning on the job. She was taking longer to do basic tasks and felt "like my brain was too big for my skull. There was a constant pulsing."
A doctor diagnosed her with chronic fatigue syndrome. She also went to a neuropsychologist who, after performing some tests, found that her IQ had dropped to the mid-90s.
But the neurological problem went untreated. She received her first Lyme disease diagnosis in 1998, but she also lost her Medicare coverage at that time and received no treatment for it. At the time, her chronic fatigue doctor told her not to worry because he said it was probably a false-positive result.
Finally, in 2000, Solomon visited Stricker, who diagnosed acute Lyme disease infection and two co-infections. One was from the malaria family of diseases.
She was put on a course of daily intravenous antibiotic treatment.
After six months of going to Dominican for treatment, her local doctor informed her she wouldn’t order the treatment anymore. So Solomon ordered cases of the antibiotic from Stricker and injected herself every day. It took eight months to notice substantial improvement.
Now on disability, Solomon still has active Lyme disease and spends about $1,000 a month on medication. Because she couldn’t work, she had to sell her house, and last year she filed for bankruptcy.
Two weeks ago, she was admitted to Dominican to have her gall bladder removed because of complications from the powerful antibiotics she has taken. Now she says she feels much better, though she still has joint pain.
Tuesday, she received a letter from one of her doctors asking her to have a CAT scan to make sure she doesn’t have any coronary complications to her Lyme disease.
"It’s working now," she said. "But it’s been a struggle."
Copyright © 1999-2003 Santa Cruz Sentinel.
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