WUFT News

Florida, National Lyme Disease Symptoms Misdiagnosed At Alarming Rate

By on September 19th, 2013
The adult female lone star tick (Amblyomma americanum) is traditionally not known to transmit Lyme disease, but recent research by Dr. Kerry Clark suggests that this tick may in fact transmit the disease.

Contributed photo/Dr. Holly Donohoe

The adult female lone star tick (Amblyomma americanum) is traditionally not known to transmit Lyme disease, but recent research by Dr. Kerry Clark suggests this tick may transmit the disease.

Ann Moore had been an outdoorsy person her whole life.

She knew many ticks had bitten her, but she didn’t know at least one of those ticks contained bacterial pathogens that damaged her body and mind.

Moore, a 53-year-old Gainesville woman, didn’t know that if she didn’t get treatment soon she would have symptoms varying from brain fog to muscle and joint pain.

For 25 years, she didn’t know she had Lyme disease.

The infectious disease, transmitted typically through a black-legged tick bite, releases bacterial pathogens into the body.

Moore was diagnosed in Gainesville in 2011. She had been to many doctors who diagnosed her with different diseases, such as multiple sclerosis and lupus.

Her symptoms included lack of concentration, inability to form words, poor vision, face numbness, chest problems, depression and joint pain that put her in a wheelchair.

She did not have the “bull’s-eye” rash, which is the clinical sign of Lyme disease.

“If you have it and you aren’t getting treated for it, you’ll ultimately become ravaged by it,” Moore said.

She has been on antibiotics, probiotics and herbal treatments to help her fight the disease.

Dr. Holly Donohoe, associate director of the Tourism Crisis Management Institute at the University of Florida, said the number of reported cases of people who have Lyme disease in the U.S. — as reported by the Centers for Disease Control and Prevention — has increased over the past 10 years, from 21,273 in 2003, to 30,000 in 2012.

And the CDC said in August the number represents 10 percent of the cases, and there were about 300,000 cases of Lyme disease this past year.

In Florida, CDC claimed 43 reported cases of Lyme disease in 2003. The annual total increased to 67 cases in 2012.

“Although when we compare that with some of the highest areas such as Connecticut, where case rates are in the thousands, the numbers in Florida might seem negligible,” Donohoe said.

Florida is behind in understanding tick-borne diseases and the complexity of tick ecology, she said.

Donohoe said some tests come back as false negatives because a patient tested too soon (before six weeks), and does not have time to develop the antibodies the test detects.

If a patient waits until after six weeks, the test may come up as positive, though by then it’s too late. The disease is systemic and can affect a number of organs and tissues in the body.

“It’s the recognition and acknowledgement of the patients that’s missing,” said Dr. Kimberly Kaye, a physician specialized in internal medicine for Haile Medical Group.

Kaye has treated a few hundred people with Lyme disease. She said some patients are not aware they need to be paying attention to avoiding tick bites or removing the tick when they see one because they feel like it’s not a threat locally.

If patients and doctors recognize the disease early, it can be solved with antibiotics, she said. If its recognized after six months, the disease becomes more difficult to eliminate.

But the real problem, Donohoe said, is that physicians in Florida sometimes don’t recognize the disease.

This misdiagnosis of Lyme disease occurs in other states, too.

She said a recent study by Dr. Kerry Clark, a public health professor at the University of North Florida, which said there are two species of Lyme disease bacteria that were previously unknown to infect human patients.

He also found that lone star ticks, previously found to be incapable of transmitting Lyme disease, may be transmitting Lyme disease in the Southeast.

Patients are suffering and the doctors have treatment guidelines they are supposed to use, Donohoe said, but they don’t always get the desired results.

“More Americans every year are being infected,” she said. “And despite arguments over treatment protocols and science diagnostics, the reality is that these patients just want their health back.”


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  • littlepieceoftheworld

    Its likely that you wont test positive if not caught early because the western blot test for one strain when there is 100 strains known and if the bacteria has had a chance to disseminate in the body its likely that the bacteria has affected your IGG subclasses. This is the part ofur immune system that makes antibodies

  • FLDA

    Thank you WUFT, Dr. Kaye, Ann Moore and Dr. Donohoe for helping to spread Lyme Disease awareness.

    We often hear the statistic that “96 percent of Lyme Disease cases were concentrated in 13 states.” So called “experts” go so far as to say that it is a “myth” that Lyme Disease occurs in all 50 states. This conclusion is not only false, but also may lead to catastrophic consequences when patients like our son fail to get diagnosed early on due to reliance on such falsehoods.

    First, it is critical to note that not all states receive federal funding to specifically track Lyme Disease. Not surprisingly, all 13 of the states with the highest reported cases also receive federal “Lyme Disease” grants for Epidemiology, the tracking of Lyme cases (along with 2 other emerging states). Thus, while most “reported” cases for Lyme Disease are in the Northeast, cases in the other areas such as the South remain vastly underreported. In addition to the disparity of federal funding:

    When a doctor thinks a disease is “rare” in a geographic region, it is not on his/her
    diagnostic radar screen. The failure to timely test for and diagnose Lyme Disease in in its early stage potentially causes patients to needlessly suffer permanent damage and/or a much more difficult to treat, persistent infection. Even with CDC positive Lyme Disease tests and a clear clinical presentation, patients have reported that their doctors insist that the results must be a “false positive” because the patient had not recently travelled to the Northeast. Meanwhile, these same patients improve on antibiotic treatment for Lyme Disease.

    Likewise, when citizens of southern states think that Lyme Disease and other tick born infections are “rare”, they do not take routine precautions such as performing daily body checks for ticks, spraying skin and clothing with tick repellant and avoiding tick habitat.

    The warm, humid climate in the Southeast results in year round tick activity.

    In the Southeast, there are numerous strains of Borrelia burgdorferi (the bacteria that causes Lyme Disease), including two newly discovered strains as outlined in the recent groundbreaking research by Dr. Kerry Clark discussed in this article. Importantly, these strains are not covered by traditional lab tests, which screen for a single strain. Thus, individuals in the Southeast are more likely to obtain false negative lab results. Dr. Clark has found Lyme infected ticks throughout the Southeast.

    In practice, the Southeast requires a heightened standard for reporting Lyme Disease cases. For example, whereas Georgia was the fourth leading state for Lyme Disease cases in 1989, the reported cases steeply declined after the change in reporting criteria.

    The CDC has repeatedly refused to recognize clear-cut cases of Lyme Disease outside of the Northeast by coining a new name, STARI, a “Lyme like” illness which is not counted in reporting figures. See research by Dr. Masters and the highly acclaimed book Cure Unknown for more on this topic.

    In 2011, our own son was repeatedly refused Lyme Disease testing for nearly a year because we did not recall a tick bite and had not recently travelled to the Northeast. During this timeframe, our son’s symptom list quadrupled to over 40 symptoms rendering him too weak to attend school, play sports or even walk many days. He spent numerous days in the hospital and suffered excruciating migraines that could only be relieved with IV morphine due to Lyme meningitis. As a result of the delays
 in diagnosis of Lyme Disease and numerous co-infections, he suffered needlessly
    and missed half of sixth grade of school. Dr. Kerry Clark has found Lyme
    Disease infected ticks all over our home town of Jacksonville, Florida. We have
    deer, often covered with hundreds of ticks, in our suburban neighborhood yard on a daily basis. Lyme Disease is not rare in Florida, but rather, it is poorly recognized and vastly underreported. Our family’s experience is the rule, not the exception. There are countless others who share the same fact pattern, many of whom have not travelled out of state.

    After decades of insisting that Lyme Disease was rare, the CDC has now conceded that they were grossly wrong, underreporting at least 270,000 cases per year, 90% of all cases. How many patients outside of the Northeast will be robbed of their health, livelihoods and childhoods before the CDC is forced to admit that Lyme Disease is not rare outside of the Northeast after all?

    We would love for WUFT and/or other news agencies to examine the disparity in reporting practices and funding for Lyme Disease.

    Melissa Bell, Florida Lyme Disease Association https://www.facebook.com/FloridaLymeDiseaseAssociation

  • Lymebuster

    Lyme is compromised of bacterial, viral, protozoal and other parasitical infections and once the immune system is compromised we see reactivation of herpes viruses and the opportunistic infections of AIDS patients. A group of Asians have been called NON HIV AIDS patients and that term could be used for lyme patients as well. We have found over 108 different kinds of bacteria in ticks in Italy and that does not take into account the myriad of viruses and other pathogens. Brucella, Mycoplasmas, Chlamydias and Q fever or Coxiella burnetti are all known and agreed upon CHRONIC infections. Lyme patients routinely show up with a plethora of pathogens ignored by the infectious disease society with their naïve and ineffectual guidelines. Those guidelines should be used to line the animal cages at CDC, NIH or NIAID but not relied upon to treat very ill patients.

  • Lymebuster

    Berl Munch Tierarztl Wochenschr. 2003 Jul-Aug;116(7-8):306-11.

    [Seroepidemiological studies of zoonotic infections in hunters in southeastern Austria--prevalences, risk factors, and preventive methods].

    [Article in German]

    Deutz A, Fuchs K, Schuller W, Nowotny N, Auer H, Aspöck H, Stünzner D, Kerbl U, Klement C, Köfer J.

    Source

    Fachabteilung 8C-Veterinärwesen, Universität Wien. armin.deutz@stmk.gv.at

    Abstract

    The aim of this study was to investigate the seroprevalences to zoonotic pathogens in hunters, to propose preventive measures and to obtain more information about the occurrence of zoonotic pathogens in local wild animal populations. From 146 male and 3 female hunters originating from the south-eastern Austrian federal states of Styria and Burgenland blood samples were taken and anamnestic data were obtained using a questionnaire. The serological investigations included the following viral, bacterial and parasitic zoonotic agents or zoonoses, respectively (antibody-seroprevalences in brackets): encephalomyocarditis virus (EMCV, 15%), Puumala-Hantavirus (10%), Newcastle Disease virus (NDV, 4%), borreliosis (IgG 42%, IgM 7%), brucellosis (1%), chlamydiosis (3%), ehrlichiosis (IgG 15%, IgM 3%), leptospirosis (10%), tularaemia (3%), Q fever (0%), Echinococcus multilocularis/E. granulosus (5%/11%), toxocariasis (17%). Out of a control group of 50 persons (urban population, no hunters) only one person was found to be seropositive for Toxocara canis and NDV and four for EMCV, all other results were negative in the control group. The high seroprevalences especially to Borrelia burgdorferi s.l., Ehrlichia spp., Leptospira interrogans, E. granulosus, E. multilocularis, encephalomyocarditis virus and Puumala virus demonstrate that hunters are particularly exposed to zoonotic pathogens. It should also be noted that one hunter was seropositive for Brucella abortus and five exhibited antibodies to Francisella tularensis. In these cases, as well as in the cases of the 15 seropositives for Leptospira interrogans, the suspected source of infection may–besides rodents–also include wild boars and brown hares. The infections with NDV and Chlamydophila psittaci may be traced back to contact with certain species of birds (potential risk: aviaries). For Hantaviruses, rodents are considered to be the main source of human infections.

    • Lymebuster

      encephalomyocarditis virus (EMCV, 15%), Puumala-Hantavirus (10%), Newcastle Disease virus (NDV, 4%), borreliosis (IgG 42%, IgM 7%), brucellosis (1%), chlamydiosis (3%), ehrlichiosis (IgG 15%, IgM 3%), leptospirosis (10%), tularaemia (3%), Q fever (0%), Echinococcus multilocularis/E. granulosus (5%/11%), toxocariasis (17%). These pathogens are not going to be eradicated with a short course of doxycycline and it is high time that we fess up to this world wide epidemic and get busy figuring out how to cure this.

  • caledon

    If you’re one of half a dozen cases in some state outside the “big 13″ I doubt this is much consolation. As UF graduate and ex-Gainesville resident I was very interested to read this.

 

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