More questions than answers when dealing with Lyme disease
By Kyle LoJacono
LAND O’ LAKES — Lyme disease is not the most exotic sounding illness, but when it comes to diagnosis and treatment it is as elusive as Atlantis.
“The real problem it’s hardly ever properly diagnosed,” said retired professor Carol Fisch. “It is misdiagnosed as fibromyalgia, chronic fatigue, lupus, Parkinson’s, Lou Gehrig’s Disease, mononucleosis, autism and many other diseases. Basically anything but what it is. I went five years before being properly diagnosed.”
Fisch was a professor at Michigan State before retiring in 1994 after contracting the disease from a tick. She now lives in Sarasota where she is still trying to treat her illness while informing others of Lyme disease.
Several bacteria and possibly viruses cause doctors to misdiagnose the disease, Fisch said.
“It is like we are modern day lepers,” said Dolores Claesson, who lives in Land O’ Lakes and learned she had Lyme disease this year. “No one in Florida knows how to treat it, and most won’t even admit it exists in here.”
Claesson’s daughter, Sofia, started displaying symptoms of the disease in October 2008 but was not diagnosed until three months later. Claesson learned shortly after she had it, too.
“Doctors said (Sofia) had mono, some said it was ‘girl hormone problems’ and one even said she was just faking it,” Claesson said. “Then, I get it too. Even Ginger Snaps, our golden retriever, got the disease, so you can’t tell me it isn’t in Florida.”
Sofia, 16, was going to Land O’ Lakes High for the International Baccalaureate program but had to miss a year of school. She transferred to Carrollwood Day School this year.
History, Symptoms And Causes
The disease was first discovered in Old Lyme, Conn., in 1975. It is a bacterial infection that causes numerous problems, such as a red rash shaped like a bull’s eye, severe mental confusion, high fever, swollen joints and glands, loss of energy, insomnia and other conditions.
While ticks and deer are thought to be the main carriers, fleas, mites, mosquitoes, birds and lizards have also been found to carry the disease. Deer, birds and lizards do not usually bite people, but they can carry Lyme disease to new places and then be bitten by ticks, which spread it to people.
Mysterious source in Florida
As of Nov. 19, there have been eight new cases of Lyme disease in Pasco County and 10 in Hillsborough County this year, according to the Pasco County Health Department. Only 88 cases were confirmed during 2008 in Florida, but many more could have been unreported.
On top of that, most doctors don’t believe anyone can contract the disease while in Florida.
“It’s a big political mess,” Fisch said. “People are getting it each year, but no one is admitting it is coming from sources in Florida. Some say people catch it in other states and bring it here. Others say maybe it came from ticks inside mulch from out of state. It seems impossible that so many get the disease each year while out of Florida.”
Claesson said on her diagnosis, “Everyone said you couldn’t have gotten it here. I still haven’t found someone in Florida that can treat our disease properly.”
Claesson said she knows more than 500 people in the Tampa Bay area that have the disease. Of those, eight live in Land O’ Lakes, two in Wesley Chapel and one in New Tampa.
“So many people are suffering needlessly from misdiagnosis,” Fisch said. “We need to have doctors educate themselves about this disease so they can help. We need people to research and study the disease so we can find a real cure.”
The present treatment is three weeks of a drug called Doxycycline, but somef doctors prescribe longer treatments of other antibiotics.
“Unfortunately those treatments work very rarely,” said Fisch. “Sometimes they work, sometimes they help for a while and most of the time they do almost nothing. However, the earlier it is detected and treated, the better the outcome. But it needs to be diagnosed correctly.”
While it seems unlikely there will be a cure discovered soon, acceptance may be a step in the right direction, according to Claesson.
“I’d like everyone to finally admit we have Lyme disease in our ticks,” she said. “People come down here to go to the beach or to Disney World and could catch it. Then they go home and doctors tell them they couldn’t have gotten it here. It just baffles me to think we live in the 21st century and we still are as clueless about this disease as we are.”
Carol Fisch says
Thank You Kyle for covering A disease that is not only a national issue but an international issue, a disease that is spreading like a wild fire but is much to often misdiagnosed, especially in this state where physicians are only begining to learn of the multi-systemic infections involved in what is commonly called Lyme disease. It has turned many wage earners into wage eaters and is devastating to many people due to the fact it is so often misdiagnosed.
Carol fisch, Adjunct Professor Emeritus, Microbiology, Immunology, Parasitology, Stealth Pathogen Research, Advocate, Activist and Victim
Darca Helle says
Excellent article! It’s great to see this topic finally being discussed. I have late-state, chronic lyme, which was misdiangosed for approximately 20 years. I was finally correctly diagnosed about 2 years ago. After undergoing one year of antibiotic therapy, I am no better. The only thing that gives me any relief are alternative treatments, which are not covered under insurance and can be quite expensive. I hope this article will be the first of many to help bring awareness to this difficult disease.
Elaine Gajarsky says
That was a great article and I am happy that finally the word is getting out about Lyme and co-infections in Florida. Two new cases were found on Sanibel in Lee County. Two women and their dog walking in a tick infested lot. The only reason they knew they had Lyme Disease was because the dog was diagnosed first. That is saying something good about vets.
Just a correction about doctors in Florida not knowing how to treat Lyme Disease and co-infection. We have one of the best Tick Borne Disease experts in North Naples. I know, since he is my doctor and I can see the difference in 5 months of treatment. I was sick for 12 years, misdiagnosed until this doctor used a ” tick only ” lab for my Lyme and co-infection tests. I am on the road to recovery thanks to him.