Under a microscope; Local research lab says it has a definitive test for lyme disease, which could lead to early diagnosis
BYLINE: Berrios, Valerie
BODY:
Vincent Sota, a former Pasco County fire-fighter and emergency medical technician, died early last month after being misdiagnosed with amyotrophic lateral sclerosis.
ALS, better known as Lou Gehrig's disease, is a fatal ailment that attacks nerve cells and affects all voluntary muscle action.
Mary Sota researched her husband's condition and came to the conclusion that he probably had Lyme disease, which mimics the symptoms of ALS, muscular sclerosis and several other diseases.
Lyme disease affects every-thing in the body, especially neurological functions, said Dr. Jo Anne Whitaker, M. D. president and director of research for the Bowen Research & Training Institute in Palm Harbor. The diagnosis of Lyme, usually contracted from an infected tick, was more plausible for our lifestyle, explained Sota, whose family often participated in outdoor activities.
What was most frustrating about her family's ordeal was that more than a dozen doctors refused to accept her theory and, thus, did not give her husband antibiotics in time to fight the normally treatable disease, she said.
Sota's suspicions were finally validated after the Sotas went to their 14th or 15th doctor. Results of a blood sample sent to the Bowen Institute showed that Vincent tested positive for Borrelia burgdorferi, or Bb, the causative agent of Lyme.
Whitaker, a medical doctor, began testing for Lyme disease in 1999. She used a variation on an immunofluorescent test she had used early in her career to detect diphtheria, whooping cough and syphilis, among other conditions.
While administering the Bowen technique, a method used to stimulate the body to heal itself, researchers at the Bowen Institute discovered its patients with fibro-myalgia, chronic fatigue syndrome and other rheumatological diagnoses were developing flu-like symptoms. Further testing showed the patients had Bb in their systems.
The Bowen technique, in effect, had drawn the antigens out of hiding. The finding led Whitaker to adapt the fluorescent test to detect Lyme.
The first test used Whitaker's own blood sample, which turned out positive for Lyme disease, a revelation Whitaker described as serendipitous.
She regards the new test method, called the rapid identification of Borrelia burgdorferi, or RIBb, as the most accurate test available because she said it is the only test that looks specifically for Bb.
Whitaker said the reason why cases like Sota's occur is because there are no good tests for Lyme disease, resulting in numerous misdiagnoses.
Most of the current Lyme disease diagnostic tests are dependent on antibodies in the blood. In some Lyme disease cases, however, antibodies may be in the tissue rather than free-floating and thus undetectable using the antibody tests, she explained.
Dr. David Reifsnyder, an infectious disease specialist in Clearwater who treats at least one Lyme disease patient a week, admitted that some strains of Lyme disease bacteria aren't detected using the standard diagnostic tests. And, he said, it is more likely to get a false negative than a false positive with the antibody tests.
Whitaker said RIBb can tell definitively if a patient has Lyme disease. "People need to know there's a good test. "
Lida H. Mattman, professor emeritus of biology at Wayne State University in Detroit, was able to culture Bb from 316 out of 316 positive samples using the same blood drawn from RIBb tests before her lab was closed due to "political reasons, " stated Whitaker.
The validation from Mattman's cultures, however, is "the reason I feel comfortable with our test, " declared Whitaker.
According to Whitaker, 32 different doctors in Florida, and hundreds worldwide, have sent blood specimens to the Bowen Institute.
Reifsnyder, one of those doctors, said he uses the Bowen Institute's test, as well as others, because it helps give him support for the course of treatment he provides his patients.
However, Reifsnyder and Sota's doctor admitted they must re-test positive Lyme samples from the Bowen Institute because the lab is not FDA approved. But, according to Sota, her doctor said all re-tests have confirmed the positive findings. Sota wouldn't identify the doctor.
Sota said the controversy surrounding the test stems from the large quantity of positives. Of the 2, 258 patients who have been tested using RIBb, almost all have tested positive, admitted Whitaker.
The percentage of positive tests is high, Whitaker said, because the test is often used just to confirm a Lyme disease diagnosis.
In addition, the large number of positives is most likely related to the lab's findings that Lyme disease is not just a tick-borne infection. The lab has found Bb in Florida and California mosquitoes and African dust.
Reifsnyder agreed it is possible Lyme could be transmitted through mosquitoes. How often that happens, however, "we don't know," he stressed.
The presence of the Lyme disease bacterium in the African dust sample remains a matter of controversy.
At the Bowen Institute's request, Eugene Shinn, a marine geologist with the U. S. Geological Survey in St. Petersburg, brought a sample of African dust he was testing for his own research to the lab. Tests on the sample showed the presence of Bb.
Excited by the finding, Shinn had the sample tested again by someone at a federal Centers for Disease Control and Prevention laboratory in Colorado, who claimed the substance was bacteria similar to Bb, he said.
Whitaker declared it was not unusual for a CDC test to come back negative because the center used the "unreliable" antibody tests.
Additionally, Whitaker concluded that the disease is more prevalent than is documented. The CDC reports that Lyme disease is mostly localized to the northeastern and upper mid-western states.
"You can get Lyme disease in Florida," stated Reifsnyder; however, odds are greater for those living in the Northeast.
In addition to the RIBb test, the Bowen Institute examines blood smears for the presence of co-infections often associated with Lyme disease.
In red blood cells, the parasite Babesia canis may be present; and in white blood cells, bacteria from the genus Ehrlichia may be present.
Reifsnyder stated that in some cases co-infections, including Ehrlichia, can be more dangerous than Lyme because they can be fatal. For this reason, the Bowen Institute will further study them.
The Bowen Institute has not yet published its research on RIBb because it has not collected all the necessary data. Being published will give RIBb credibility, Whitaker said.
The test will be valuable in treating Lyme disease, stated Whitaker, because RIBb can be used during the early stages of the disease, which means treatment can occur earlier.
"It's very important to get to a Lyme-literate doctor, " Sota declared.
Reifsnyder admitted there are few physicians in Florida "well-versed in Lyme. " Most doctors in the state don't see the disease often or haven't developed an interest in it, he said.
Meanwhile, hope for a Lyme disease cure may be on the rise. Whitaker said a research center in northern Italy is attempting to cure Lyme by killing Bb with intracellular heat. She will be one of a handful of patients to begin the treatment this month.
According to Whitaker, seven patients who have received the treatment in the Netherlands are referred to as "ex-Lyme patients."
Whitaker can be reached at (727) 937-9077.
LOAD-DATE: October 1, 2002
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