Remembering Vincent Sota
"1203. Vincent J. Sota I was misdiagnosed with A.L.S. in Dec. '99. In Aug. '00, after much research on our part, we found out I actually have Lyme Disease. We know the tremendous limitations both of these conditions can cause.
We support David & his efforts 100%. Thank you for listening! Spring Hill, Florida"
St. Petersburg Times- Pasco County
Firefighter in battle with Lyme disease
Vincent Sota went to more than a dozen doctors before one made the right diagnosis.
By TAMARA LUSH
© St. Petersburg Times, published December 10, 2000
HUDSON -- As a firefighter and EMT, Vincent Sota spent the past decade saving lives.
Now, he must rely on others to save his.
More than a year ago, Sota was diagnosed with amyotrophic lateral sclerosis, a fatal, degenerative disease of the nerve cells commonly called Lou Gehrig's disease, that leaves its victims unable to walk, talk or move.
Sota, then 45, was given two years to live.
His symptoms started with a nagging twitch in his chin and slurred speech. He took a leave of absence from his job at Pasco Fire Rescue in August, and now, he can't talk or move his left arm. He has gone from a strapping 230 pounds to 150 pounds on his 6-foot-2 frame.
Mary, his wife, refused to believe the ALS diagnosis. She researched the Internet for more information.
"I was desperate," Mary Sota said recently. "We were willing to take our chances."
A paragraph in one article said that the symptoms of Lou Gehrig's disease -- facial twitching, slurred speech, weight loss -- were also that of Lyme disease, caused by bacteria contracted contact with ticks. Lyme disease is easily treatable with antibiotics if diagnosed early, experts say, and is more common in northern states than in Florida.
"We hike, we camp, we've seen ticks," Mary Sota said. The family had vacationed in Minnesota, a hotbed of Lyme-carrying ticks. At some point, she's not sure exactly when, she noticed a rash on Vincent's torso, which is one of the main symptoms of Lyme disease. It went away, and she didn't much pay attention to it.
But as she read more about Lyme disease, she became more convinced that it, not ALS, was plaguing Vincent.
"Lyme disease is called the great imitator," Sota said.
But doctors weren't as convinced. In all, Vincent was evaluated by 15 doctors, and most told him that he had ALS. When Mary Sota told one neurologist about her Lyme disease theory and the need to put Vincent on antibiotics, the doctor told her that he had no idea what she was talking about.
The last doctor they saw diagnosed him with Lyme disease, said Mary Sota.
Lisa Conti, a public health veterinarian for the Florida Department of Health, said there are about 50 cases of Lyme disease reported every year in Florida. About two-thirds of those cases are people who contracted the disease in other states.
Nationwide, more than 128,000 cases of Lyme disease have been reported in the U.S. since 1982, according for the Centers for Disease Control in Atlanta.
Part of the confusion with many Lyme disease diagnoses is that many tests for it yield false positive results, Conti said. Vincent has taken three different tests for Lyme Disease, and on the most accurate test, he tested positive.
Vincent's latest doctor has put him on antibiotics for four months. He also has a feeding tube in his stomach because he can barely swallow.
While Vincent struggles to scrawl a few letters on a piece of paper, his wife is fighting for him. She has taken a leave of absence from her part-time job as a printer at the Pasco County Sheriff's Office so she can care for her husband.
She spends hours on the phone each day with insurance companies, and tries to keep the family's life as normal as possible for the couple's two children, aged 7 and 5.
"When you have a wonderful husband, you want to keep him around," she said. "I will fight to his dying breath, which should be around the age of 99. I'm not going to settle for anything less."
Mary Sota credits their "family," the employees at Pasco Fire Rescue, for helping them in their darkest hour. Volunteers have worked Vincent's shifts so he will still get paid and donation boxes have raised enough to buy the family groceries.
Without the donations and help, the Sotas bring in his regular salary, but because Sota is not working and due to the additional medical expenses, the money is not enough to pay the mortgage or raise two children.
"(Pasco Fire Rescue) has kept this family going," she said. "They know how strong he is."
-- Tamara Lush can be reached in west Pasco at 869-6245 or (800) 333-7505, ext. 6245. Her e-mail address is firstname.lastname@example.org.
To help the Sota family, send donations to: The Vincent J. Sota Fund, Acct. #28282, The Florida West Coast Credit Union, 8647 Little Road, Suite 6, New Port Richey, 34654.
To learn about Lyme disease
Former firefighter dies of Lyme disease
At first doctors thought Vincent Sota had amyotrophic lateral sclerosis. The correct diagnosis of Lyme disease came too late.
By RYAN DAVIS, Times Staff Writer
© St. Petersburg Times
published July 6, 2002
SHADY HILLS -- Vincent Sota fought big fires, but it was a tiny tick that rendered him a quadriplegic.
Sota, a former Pasco County Fire Rescue driver engineer and emergency medical technician, died Thursday. He was 47.
He started at the county in 1991 and worked in the Hudson, Seven Springs and Crystal Springs stations.
His wife, Mary, has been fighting to draw attention to his affliction for more than two years. Vincent Sota was diagnosed in 1999 with amyotrophic lateral sclerosis, a fatal nerve disease that renders its victims unable to walk or even talk. It is commonly known as Lou Gehrig's disease.
Mary Sota, 40, refused to believe the diagnosis. Her research led her to believe he had Lyme disease, which is caused by bacteria contracted from ticks and mimics many symptoms of ALS. Mary Sota said he caught it from a deer tick in Florida.
Detected early, Lyme disease is treatable, but it took 15 doctors before Vincent Sota was diagnosed with Lyme disease.
Every time his story got out, Mary Sota said she received e-mails and calls from people across the United States who suffered similar fates.
They gave her hope, she said. Last year was the couple's 11th anniversary.
"He owes me 39 more," she told the St. Petersburg Times in December. "I'm not letting him go until I get 39 more years."
At that point, Vincent Sota was looking better. His 220-pound frame, which had withered at one point to 131 pounds, was starting to get bigger again.
He was home from the hospital. He was confined to a bed and couldn't speak, but he communicated with his wife by blinking. His children -- David is 7 and Emiko two years older -- climbed into his bed to kiss him.
His wife slept by his side on an air mattress -- but never for more than four hours at a time. She needed to monitor the machinery that helped him breathe and eat.
"I would love," she said, "to hear his voice again."
-- Ryan Davis is the police reporter in Pasco County. He can be reached in west Pasco at 869-6245, or toll-free at 800-333-7505, ext. 6245. His e-mail address is email@example.com.
Highly Accurate Lymes Disease Test Available
Flu Shot Schedule, 2002, Avon, Ohio NEWS ARTICLE from The Suncoast News, 8-7-02, By Valerie Berrios
“New lab test for Lyme disease may end ALS misdiagnosis
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, multiple sclerosis and several other diseases.
Lyme disease affects everything in the body, especially neurological functions, said Dr. JoAnne 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 availablebecause 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 testsbefore 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 [ELISA and Western Blot].
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 …
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 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.” ”
Steven Sponaugle, Research Director, Florida Detox and Wellness Institute
For more information:
JoAnn Whitaker, M.D.
Bowen Research and Training Institute, Inc.
P.O. Box 627
Palm Harbor, Florida 34682