Tom was sick and suffering with mysterious symptoms for nine years before a test finally convinced one of his doctors that he did indeed have Lyme disease. At that point, he began taking antibiotics. In the first month, severe Herxheimer reactions made him even more ill than he had been without treatment, but he continued for five months. Three years later, he now feels better in most ways. Occasionally, he has bad days that he attributes to the Lyme bug, but feels that for the most part, it is suppressed.
"I thought I was dying," he says. Hit by a massive anxiety attack while driving through Kansas, he experienced such debilitating vertigo that he had to pull the car over to the side of the road. "Everything was spinning wildly around me."
"I had lost track of the number of doctors I went to for help over those nine years. One doctor in Massachusetts, who I knew thought I was crazy finally told me that he thought I was crazy. He told me there was nothing wrong with me, and recommended psychiatric help."
"He told me that he thought I was an 'attention-seeker'."
I said to him, "Look, doc. I'm a concert pianist and a concert organist. If I want attention, all I have to do is book a recital. I don't need attention from you."
The test that finally clinched the correct diagnosis for Tom is a special kind of technique called Flow Cytometry. It is available at the Central Florida Research Laboratory, located in Winter Haven, FL. Instead of looking for the antibodies that build up in response to a Lyme Borreliosis infection, the Flow Cytometry technique finds the Borreliosis antigens directly.
Since Spring 2007, the CFR lab has tested several thousand people for Lyme disease. Blood samples arrive from locations all over the globe, including all over Europe, where Lyme disease is known simply as Borreliosis.
In addition to testing people, CFR also tests animals for Lyme. Please refer to the CFR website for more information about the Flow Cytometric Lyme test for pets and people.
Central Florida Research Laboratory
Winter Haven, FL
Medical Director: Clifford H Threlkeld, DO, FCAP
Phone Number: (863) 299-3232
Fax Number: (863) 299-3355
I grew up in a time and place where the accepted norm was to spend every possible moment out-of-doors. My mother gently objected to my lounging on the couch for hours, absorbing books by the stackful, whenever it was sunny and warm outside. But since I grew up in SoCal, it was ALWAYS sunny and warm. I did ruin my eyesight, so she was probably right about that. And although I read voraciously in the summer (and every other time of the year), I still managed to make it outside to swim and hike with friends pretty much every day as a kid.
So when spring comes tumbling in, bringing beautiful outdoorsy weather, should you still be sending your kids outside to play? Have things changed now that you are aware of the dangers of Lyme? Now that you know you and your loved ones are only one tick-bite away from it?
This spring, reports are already piling up in regional news, warning that this is likely to be a heavy tick season. The ticks are early and plentiful.
One suggestion for preventing Lyme is to advise your kids not to sit on the ground. Now, how realistic is that? For kids, part of the allure of playing outside is the opportunity to investigate the bugs and other critters crawling on the ground. And when you're little, how else can you eat your snacks, play tic-tac-toe in the dirt, examine the fluttering moth you just caught in your hands, if not sitting on the ground? And what about toddlers who are still getting their sea-legs, and end up sitting more than walking?
One thing that really bugs me is when I read, over and over in various articles, that ticks must be embedded for 24 hours or so in order to infect the person they bite. While that may be a comfort to read, there is no scientific evidence to support it. Prevention is the very best medicine, not wishful thinking.
Aside from prevention, early detection is still the most important thing when it comes to having been exposed to ticks. Bear in mind, tick bites don't hurt. This is because the tick injects a sort of anaesthetic with the bite that will numb the area, so you won't feel it. Perform regular tick checks on yourself and your kids, especially after time spent playing outside. Take the time to be careful and diligent. Remove ticks before they have a chance to get embedded.
And please tell everybody you know that tick checks are vitally important.
Pathologist Sin Hang Lee, MD, and his team have developed a DNA test for early Lyme detection. Details are available in the American Journal of Clinical Pathology. The test is the first of its kind. I recently talked with Dr Lee about the new test, which has been in use at the Milford Hospital for about one year. Click to listen to our conversation.
Early detection is extremely important. People who are diagnosed with Lyme in the early stage have a good chance of receiving treatment that will cure them, and they will have no further complications from the disease. The DNA test eliminates the false positives that are problematic in the traditional Lyme tests, specifically the Western Blot and the ELISA.
The test is good news for people in the Milford area who suspect they've been bitten by a tick. Reports from other regions in the NE, such as Portland, Maine, are already warning of an increase in tick bites this year.
And it's only April.
According to the announcement of the new DNA Lyme test, "physicians at the Milford Hospital Emergency Center and Walk-in Urgent Care Center, who see about 40,000 patients a year, usually order the traditional antibody testing and the new DNA test for patients presenting with Lyme disease-like symptoms. Most insurance companies except Aetna will pay for the test."
Patients and physicians interested in information on this DNA test may call George Poole, manager of Milford Medical Laboratory, at 203-876-4496.
Listen to our interview with Dr. Sin Hang Lee about the Lyme DNA test.
She'd been telling me about her favorite pastime, walking with her dog, Daisy, through the woods near her small house.
"Knock on wood, I haven't gotten it yet. It's kind of shocking how many people have, but honestly, I don't think I've ever even seen a tick out there," she added. I could tell she was amazed at her good luck. "But the fact that I haven't gotten sick doesn't seem to make me more cautious," she went on. "In fact, I feel sort of immune to it." She paused, considering this idea for a moment.
"Are some people just more susceptible than others?" she asked.
While silently giving thanks (and feeling relieved) that my friend remains happy and healthy, I explained what I've learned from Lyme experts regarding our susceptibility.
Ginger Savely, RN, tells us that in her experience observing and treating Lyme patients, it's true that some people tend to attract ticks, just as some of us are mosquito magnets, and some never get bit. Other medical professionals, such as Dr Cowden and the late Dr Joanne Whitaker, who have studied Lyme, its testing and treatment for a lifetime, claim that the Lyme bacteria can be found in body fluids, such as tears, sweat and semen. Pediatrician Dr Charles Ray Jones, who is nothing short of a hero in many of his colleagues and his Lyme patients' estimation, says he has treated very young children who were infected by their mother while in vitro.
"The problem with being Lyme-free while living in a place such as the Hudson Valley," explained Dee, "is that you lose your fear. You don't take the precautions you know you should because it just hasn't happened yet."
Here are some precautions to take, if you plan to venture outdoors in this beautiful spring weather. Be sure to check your dog, too.
To reduce the risk of Lyme disease:
• Wear light-colored clothing and preferably long pants and long sleeves when in places where ticks may be present. This helps in spotting ticks that may be on clothes. Tucking pants into socks is also a very good idea.
• Perform a tick check every day so ticks can be removed before they have a chance to feed and transmit pathogens they might be carrying. Research indicates that a tick has to feed for at least 36 hours before it can transmit pathogens such as the bacteria that causes Lyme disease.
• Consider the use of repellents if spending considerable time outdoors.
Source: New York State Health Department
PS: I asked Dr Eva Sapi, Director of Lyme Research at the University of New Haven, Connecticut, whether it was true, in her estimation, that a tick must be attached "for at least 36 hours before it can transmit pathogens," and she assured me there was no evidence to support that assertion.