Published: January 24, 2011

For more than two years, Dolores Claesson has fought a microscopic enemy, a germ passed into her 17-year-old daughter, Sofia, by a sesame seed-size tick.

If caught early, Lyme disease could have been easily treated, said Dolores Claesson, who runs a support group and manages a widespread network of Lyme disease patents and researchers. But because the malady has not really found a home in Florida yet, she said, doctors here are reluctant to diagnose it.

And some medical researchers agree, saying many doctors simply are complying with a study by the Infectious Diseases Society of America that warns against over-diagnosing Lyme disease because its symptoms are so complex and mimic other ailments.

In Sofia’s case, doctors misdiagnosed her disease and mistreated it, stretching her sickness from days to months and eventually years. Now, her immune system is depleted and she is a perfect host to any virus that comes along, her mom said. Just this week, the teen spent eight hours in a doctor’s office getting an intravenous antibiotic drip.

In October 2008, Sofia contracted a high fever, a sore throat and her doctor said it was mono, Dolores Claesson said, and referred the teen to other physicians.

“A pediatric physician said it was fatigue syndrome,” Claesson said, “that it was hormonal and common among high achieving girls. he told me to take her on a 20-minute walk three times a week and she would be fine.” the doctor also advised Claesson to take her daughter to a psychiatrist.

After a while, Sofia developed warts on bottoms of her feet and began sleeping 20 hours a day, her mom said.

“In all,” she said, “we saw about 20 doctors.”

None thought of Lyme disease.

“This is normal.” Claesson said. “They don’t know about it. They don’t know the signs and symptoms. in the Northeast, it’s different. But here in Florida, doctors don’t know about it and don’t know how to diagnose it. They don’t know how to treat it.

“I want my kid fixed,” she said. “Doctors here are like ostriches putting their heads in the sand. It’s been 27 months of pure hell,” she said.

Over the past couple of years, Claesson, who has an educational background in biochemistry but chose a career in business, is host to a Lyme disease support group that includes 400 researchers, doctors and victims in 40 countries.

“We’re lepers,” Claesson said. “We can’t get any treatment. It’s bankrupted people. We are the new HIV/AIDS patients and we are being ignored by physicians and if they do let us know we have Lyme disease, they tell us to go to new York. We can’t all fly to new York for treatment.”

She said her daughter, who has missed much of the past two years of school, likely contracted the disease during a recent trip to Europe.

She understands that doctors here are not familiar with the disease. They are pressured to diagnose something during short office visits and most of the time, the patient actually suffers from the flu, she said. Lyme disease symptoms are complicated, she said, and often look like the common flu.

“Doctors have only 10 minutes to make a diagnosis,” she said. “Mostly, it’s hit or miss with cures.”

At 42, Shawn Ingram should be at the peak of his career as a paramedic firefighter. instead, he’s holed up in his house, on full disability because of Lyme disease.

He’s been sick for 12 years and was diagnosed with Lyme disease eight years ago.

“Back then, I had no idea what was going on,” he said. “Being in the medical field and 30 years old, I was gangbusters. I was a nothing-can-harm-me kind of guy.”

One day he came down with a bad flu, he said. “It never went away.”

Fatigue, exhaustion set in.

“My mental clarity was gone,” he said. “Now, I don’t have endurance and some days just walking though the house is taxing.”

A Florida native, Ingram said he thinks he was bitten by a tick somewhere in Central Florida, perhaps when he was fighting brush fires.

Doctors in Florida passed him around, unable to diagnose what was wrong, he said. “It took me about three years to find a doctor,” he said. “I even went to the Mayo clinic in Jacksonville. in those three years, I saw about 18 doctors. I saw infectious disease specialists, a cardiologist and internal medicine specialists.”

They guessed at different maladies, he said. Chronic fatigue syndrome and fibromyalgia topped the list.

Lyme disease, at the time, just didn’t happen in Florida, he said.

“Nobody was really treating it,” said Ingram of Tampa, “until I got diagnosed eight years ago.”

Finally, he found a local doctor who drew blood and sent it to a specialized laboratory in California. the results: Lyme disease, he said.

Since then, he has reached out to people with Lyme disease, offering whatever support he could.

“I’ve seen people recover from it and I’ve seen people not recover from it,” he said. “If it’s caught early, it is a treatable disease. But, the medical system in Florida needs to be educated; doctors in Florida need to be educated.”

Lyme disease was first documented in the United States in 1975 and is named for the town in Connecticut where some of the first cases occurred. Experts say that over 16,000 cases a year have been reported in the United States since1993, mostly in the Northeast.

A tick-born disease similar to Lyme is sweeping across the southeastern United States. According to the Centers for Disease Control and Prevention, the southern tick-associated rash illness (STARI) is caused by the lone-star tick.

But, unlike Lyme disease, STARI has not been linked to arthritic, neurological or chronic symptoms.

While the cause of STARI is unknown, studies have shown that is not caused by Borrelia burgdorferi, the bacterium that causes Lyme disease, the CDC reported.

Carol Fisch is a medical researcher living in Sarasota who has devoted much of her work to Lyme disease. Diagnosed with Lyme disease 18 years ago in Michigan, she said she was sick for five years before doctors correctly discovered what was ailing her.

Now, she heads a support group for Lyme disease victims.

“The disease is spreading faster than wildfire,” she said. while many cases diagnosed here originate in other states, Florida is home to ticks that carry Lyme disease, she said.

She admits that Lyme disease is complex. Symptoms caused by pathogens that are difficult to detect vary widely and in some cases are indistinguishable from other diseases.

“The way it will show itself may be different in different people,” she said. “A lot has to do with genetics.

“Physicians need to be aware that it’s here,” she said. “For every case that is diagnosed, 100 are misdiagnosed.”

Across Florida, Lyme disease cases have more than tripled since 2007, according to the Florida Department of Health’s Office of Statistics and Assessments, though the numbers are not staggering.

In 2007, 30 Lyme disease diagnoses were reported in Florida and that jumped to 88 in 2008. in 2009, the last year available, Florida recorded 110 cases of Lyme disease.

In 2009, Hillsborough County’s 11 reported Lyme disease cases tied Sarasota and Lee counties for the most among Florida’s 67 counties. the county only had one case reported in 2007 and two in 2008.

I began having a bulls-eye rash and lyme disease symptoms (flu-like, mentally spacey and forgetful, moody, reallllly tired) about 10 days after I theorize I was bit by a tick (never saw the tick.) after going to 2 doctors I was diagnosed with lyme and given 6 weeks of antibiotics. What I want to know is how long should I be feeling sick? I'm 2 weeks into my antibiotics and feeling much better, but still very far from feeling like myself. Mostly depressed, lathargic, stiff and unenergetic. I've read that some people say 3 days, some say 2 months, some say up to 9 months. does anyone have any answers? when will I feel like me again?

Lyme disease is controversial in the medical world. There are two competing sets of guidelines regarding treatment of Lyme. The one from the group considered the most powerful (the Infectious Diseases Society of America) says three weeks of antibiotics is all you should ever be given for Lyme, no matter how sick you are and whether or not you feel better. (Does that make sense to you?) The other one, the International Association of Lyme and Associated Diseases Society favors a more individualized approach. that group recommends treating until all symptoms are gone, and then continuing for a while past that, just to make sure. Guess which set of guidelines the insurance industry prefers? Yep. They want to cut you off after three weeks, no matter what.

In self-defense, you need to learn as much as you can about this miserable, complicated disease.

Good sources of info about Lyme disease:
canlyme.com
lymenet.com
lymeinfo.net
lymediseaseassociation.org
ilads.org
betterheatlhguy.com
publichealthalert.com

It can last for a while, you'll probably not feel like yourself for another month. It can last for 6 months for some though

Jennifer, it all depends on what 'stage' of the disease you are in. If you started the abx within ABOUT 3-4 weeks of the bite, when the ring was still clearly visible, you will likely be doing quite well by the 5th week as it would be in the 'early' stage, but STAY on the abx thru the 6th week! If all is not cleared up by then you would be best to return to the doc for a re-evaluation… AND full blood work (titer & Western blots- by a reputable lab like IgeneX) to see if you were exposed PRIOR to this last bite. If so, disseminated Lyme requires a much longer abx protocol. A few months, anyhow. Did you "herx" to the abx a day AFTER you started on them? this may indicate a more serious infection than just "early" (localized) BB infection. {Look up 'herx' as "Jarisch-Herxheimer reaction"}. Good luck! & don't forget to check with local Lyme groups for more guidance. – M
P.S: Don't forget to take probiotics- away from the abx & stay OFF the sugar (and alcohol, etc.)

Many thanks to Winona Daily News reporter Patrick Anderson forhis Dec. 8 article that brought to light the Lyme disease policydiscussion taking place at Winona Health.

Many complicated issues surround Lyme disease, and Anderson touchedon a few.

I believe Winona-area residents deserve to know what it could meanto them if the Infectious Diseases Society of America guidelinesbecome the rule.

Lyme disease is a complex disease — particularly when accompaniedby a co-infection, such as anaplasmosis and babesiosis, which arepresent in a high percentage of deer ticks in the Winona area,according to a recent St. Mary’s University study.

There are about a hundred strains of the bacteria that cause Lymedisease in Minnesota. once in the body, the bacteria don’t stay inthe blood stream long; they can work their way into tissues, cells,nervous system, joints, muscles, brain and heart. They can changeform or lie dormant, hiding from detection for months oryears.

These characteristics make the bacteria particularly hard to detectby blood tests, especially those that were designed to detect onlya handful of antibodies generated by a single strain.

These “standard” tests recommended by the IDSA will be the solediagnostic tool if the Winona Health Lyme policy is adopted.

In a statement, Winona Health wrote, “we support evidence-basedresearch and protocols which are the established standard ofcare.”

According to David Sackett, a leader of the evidence-based medicineapproach, “Good doctors use both individual clinical expertise andthe best available external evidence, and neither alone is enough.Without clinical expertise, practice risks becoming tyrannized byevidence, for even excellent external evidence may be inapplicableto or inappropriate for an individual patient. Without current bestevidence, practice risks becoming rapidly out of date, to thedetriment of patients.”

“Clinical” expertise takes into account a patient’s medicalhistory, exposure to deer-tick habitat or knowledge of a bite, andwhat treatment will be best tolerated. Additionally, evidence-basedmedicine relies on patient values, “the unique preferences,concerns and expectations each patient brings to a clinicalencounter and which must be integrated into clinical decisions ifthey are to serve the patient,” writes Sackett.

If the IDSA guidelines are mandated, physicians will not be able touse their best judgment in consulting with a patient, but will belimited by a set of recommendations that have scant scientificevidence behind them.

Lyme and other tick-borne diseases affect each person differently.some patients have success with the IDSA-recommended antibioticprotocol, while others need a longer, more aggressive course oftreatment.

Each patient must decide what is best for them, based on therecommendation of their doctor, taking into account the risks ofantibiotic side-effects versus the often debilitating symptoms ofthe disease.

If “the established standard” is mandated, patients will no longerhave that choice. whether their health is improving or not, afterthe IDSA-recommended course, their treatment will be cut off.

Dr. Elizabeth Maloney, who has developed accredited physiciancourses on Lyme disease, writes that the Lyme disease bacteria“doesn’t develop resistance but some strains start with an abilityto tolerate certain antibiotics. Antibiotic tolerance variesbetween bacterial strains.”

The safety of long-term oral antibiotics is taken for granted inother illnesses that are far less incapacitating than Lyme, such aschildhood ear infection, adolescent acne and adult rosacea, saysMaloney.

It is also worth noting that the Union of Concerned Scientistsreport that 70 percent of the antibiotics consumed in the U.S. areby feed animals. To offset crowding and poor sanitation on feedlots, low doses of antibiotics are added to animal feed, promotingthe development of antibiotic-resistant strains of bacteria thatcan spread to humans.

I am confident that the thoughtful physicians at Winona Health willtake these issues into consideration on Dec. 20 when they votewhether to adopt the IDSA guidelines for the diagnosis andtreatment of Lyme disease, human granuloctytic anaplasmosis andbabesiosis.