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Browsing Category Lyme Disease

What is Lyme Disease

January 13, 2017 · by Wayne County Lyme Disease Task Force

Lyme Disease is a bacterial infection, caused by the spirochete Borrelia burgdorferi, that is acquired from the bite of an infected tick.  It is most common in the Northeastern states, the Upper Midwest and the Pacific Northwest states. However, cases of Lyme Disease have been reported in all 50 states.  Typical symptoms are “flu-like” and include fever, headache, general achiness and fatigue. Some people may develop a distinctive “bulls-eye” rash.  If left untreated, the infection can spread to the joints, heart, nervous system, brain, muscles and more.

Ticks often harbor other bacterial, protozoal, viral and parasitic organisms that can be transmitted through the same tick bite.  The co-infections are often challenging to diagnose, as clinical features often overlap with many of the other tick-borne diseases, including Lyme Disease.  Some of the most common tick-borne co-infections are:  Babesia, Ehrlichia, Anaplasma, Bartonella, Rocky Mountain Spotted Fever, Tularemia, Powassan Encephalitis and Southern Tick-Associated Rash Illness (STARI).

Lyme Disease is often called “The Great Imitator.”  Symptoms often mimic those of many other diseases. Misdiagnoses include: Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Fibromyalgia, Alzheimer’s Disease, ADD/ADHD, depression, anxiety, Parkinson’s Disease, mental illness, Chronic Fatigue Syndrome, Lou Gehrig’s Disease, carpel tunnel syndrome and more.  There are over 150 common Lyme Disease Symptoms that are core symptoms of other diseases.

Lyme Disease is a clinical diagnosis – based on your medical history, symptoms and exposure to ticks.  A negative blood test result does not mean you don’t have Lyme Disease.  However, if the “bulls-eye” rash is present, it is a definitive diagnosis of Lyme Disease and treatment should begin immediately.  Antibiotics are used to treat Lyme Disease and treatment options are continually evolving.  Lyme literate doctors (LLMDS) will prescribe 6 to 12 weeks of a common antibiotic, like doxycycline or amoxicillin for a case of Lyme Disease that is caught early.  This is effective for most people.  Treatment may be extended if your symptoms remain.  If not treated promptly, Lyme Disease may become persistent and longer courses of antibiotics may be necessary.  It is imperative that patients educate themselves and become an advocate for their health rights.  

Symptoms

January 12, 2017 · by Wayne County Lyme Disease Task Force

Lyme Disease can begin with mild flu-like symptoms, such as fever, headache, general achiness, swollen glands, extreme fatigue and a possible rash. Some people may only present with a headache, sleep disruption, memory and/or concentration problems. Ibullseye rash associated with Lyme Diseasenitial symptoms may occur within a day or up to eight weeks after a bite from an infected tick.

The typical rash associated with Lyme Disease is the “bull’s-eye” rash. However, the rash is seen in fewer than 50% of diagnosed cases.  It may also present in other forms, such as a round or oval reddish rash.  If the “bull’s-eye” rash is present, it is a definitive diagnosis of Lyme Disease and treatment should begin immediately.

If the initial infection goes undiagnosed and untreated, the infection can progress, traveling throughout the body and affecting any organ. Most patients experience extreme, debilitating fatigue.  In the heart, the bacteria may cause palpitations.  In the digestive tract, it may cause nausea, acid reflux, irritable bowel or diarrhea.  Hypothyroidism and menstrual irregularities occur when the bacteria enters the endocrine system.  Learning disabilities, memory impairment, headaches, sleep disturbances and concentration problems may occur when it enters the brain.  A patient may also experience joint pain and swelling, muscle soreness, twitching and cramps.

HEAD, FACE AND NECK SYMPTOMS
Headache
Facial paralysis
Tingling of nose, cheek or face
Stiff neck
Sore throat, swollen glands
Heightened allergic sensitivities
Twitching of facial and/or other muscles
Jaw pain and/or stiffness
Change in smell, taste
DIGESTIVE SYMPTOMS
Nausea and/or vomiting
Irritable bladder
Unexplained weight loss or gain
Loss of appetite, anorexia
RESPIRATORY AND CIRCULATORY SYMPTOMS
Difficulty breathing
Night sweats and/or chills
Heart palpitations
Diminished exercise tolerance
Heart block or murmur
Chest pain or rib soreness
PSYCHIATRIC SYMPTOMS
Mood swings, irritability, agitation
Depression and/or anxiety
Personality changes
Malaise
Aggressive behavior
Suicidal thoughts
Crying easily
Disturbed sleep (too much, too little)
Difficulty falling or staying asleep)
Paranoia and/or hallucinations
Obsessive compulsive behavior
Manic behavior
COGNITIVE SYMPTOMS
Dementia
Forgetfulness
Short and/or long term memory loss
Attention deficit problems
Confusion and/or difficulty thinking
Difficulty concentrating
Difficulty with reading and/or spelling
Disorientation
REPRODUCTION AND SEXUALITY SYMPTOMS
Female
Unexplained menstrual pain
Menstrual irregularity
Reproduction problems
Extreme PMS symptoms
Cessation of menstrual cycle
Male
Testicular and/or pelvic pain
Erectile dysfunction
EYES, VISION
Double or blurry vision
Conjunctivitis (pink eye)
Over-sensitivity to light
Eye pain or swelling around eyes
Floaters and/or spots
Red eyes
EARS, HEARING
Decreased hearing
Ringing and/or buzzing in ears
Sound sensitivity
Pain in ears
MUSCULOSKELETAL SYMPTOMS
Joint pain, swelling and stiffness
Shifting joint pain
Muscle pain or cramps
Poor muscle coordination
Muscle weakness
NEUROLOGIC SYMPTOMS
Numbness, tingling or pinpricks in body
Burning and/or stabbing sensations
Burning in feet
Weakness and/or paralysis of limbs
Tremors and/or shaking
Seizures
Poor balance and/or dizziness
Difficulty walking
Motion sickness and/or wooziness
Lightheadedness and/or fainting
Encephalopathy
Encephalitis
Meningitis
Encephalomyelitis
Academic or vocational decline
Auditory processing problems
Word finding problems
SKIN SYMPTOMS
Erythema Migrans (rash)
“Bulls-eye” rash
GENERAL WELL BEING SYMPTOMS
Decreased interest
Extreme fatigue
Unexplained fevers
Flu-like symptoms
OTHER SYMPTOMS
Dysfunction of thyroid
Liver inflammation
Bladder and kidney problems

The Stages of Lyme Disease

January 11, 2017 · by Wayne County Lyme Disease Task Force

Lyme Disease symptoms may appear quickly, or gradually over time.  The symptoms are incredibly varied and often mimic the symptoms of other diseases.  If diagnosed early, Lyme Disease can usually be easily treated with antibiotics. However, if the diagnosis is delayed, treatment and recovery become more difficult. Lyme Disease can go through several stages, depending on the length of infection and where the infection has spread in the body.

Stage 1 – Early Localized Lyme Disease
Early Localized Lyme Disease usually develops 1 to 4 weeks after infection.  Symptoms may include:

  • Circular, red “bull’s-eye” rash that may expand over time
  • Flu-like symptoms:
    • Fatigue
    • Fever
    • Chills
    • Joint and muscle pain
    • Stiff neck and headache
    • Swollen lymph nodes
    • General feeling of illness

In some cases, symptoms may not always be present, and a Lyme Disease infection may not even be suspected.


Stage 2 – Early Disseminated Lyme Disease

Early Disseminated Lyme Disease may occur weeks to months after initial infection.  The symptoms may range from mild to severe and may include:

  • Flu-like symptoms similar or worse than Stage 1 symptoms
  • Expanding, circular “bull’s-eye” rash
  • Rashes on other parts of the body
  • Fatigue
  • Sore throat
  • Swollen lymph nodes
  • Fever
  • Chills
  • Joint and muscle pain
  • Headache and stiff neck
  • Pain, weakness or numbness in the arms and/or legs
  • Paralysis or weakness of facial muscles
  • Poor memory
  • Pink-eye
  • Episodes of pain, redness and swelling in joints, especially knees
  • Palpitations

Stage 3 – Late Disseminated Lyme Disease

This serious stage of Lyme Disease occurs when the disease has not been treated during the earlier stages.  Damage to the joints, brain and nerves may develop months or years after infection.  Symptoms may include:

  • Severe headaches
  • Arthritis of the large joints (knees, hips, etc), which may cause swelling, redness and fluid build-up
  • Numbness and tingling of the hands, feet and back
  • Extreme fatigue
  • Temporary paralysis of the facial muscles
  • Heart arrhythmia
  • Memory loss
  • Mood disorders
  • Sleep disturbances
  • Difficulty concentrating
  • Mental fogginess
  • Night sweats

Post-Treatment Lyme Disease Syndrome (PTLDS)

Also called “Chronic Lyme Disease, ” PTLDS has a wide range of symptoms and may go on for months and even years. Unfortunately, many people with Lyme Disease are misdiagnosed for years, allowing the infection to spread throughout the body.  Research suggests that several factors, including a low-grade persistent infection or a Lyme-triggered autoimmune response,  may account for the persistent symptoms1. About 1 in 10 people who get Lyme Disease will have lingering symptoms2, which may include:

  • Extreme fatigue which can linger for years
  • Widespread muscle and joint aches
  • Arthritis
  • Stiff neck
  • Extreme headaches
  • Memory loss
  • Shooting pain, tingling and loss of feeling in arms, face, hands and legs
  • Bell’s Palsy
  • Hearing and/or vision loss
  • Irregular heartbeat
  • Depression, stress and anxiety disorders
  • Ringing in ears
  • Dizziness and/or poor balance
  • Speech difficulty
  • Sleep disturbances
  • Sexual dysfunction
  • Confusion
  • Organ damage

1Chronic Lyme Disease. (n.d.). Retrieved from http://canlyme.com/just-diagnosed/treatment/chronic-lyme-disease/
2Chronic Lyme Disease (PTLDS) — Complications. (n.d.). Retrieved from http://www.webmd.com/arthritis/chronic-lyme-disease-complications

Other Tick-Borne Diseases

January 10, 2017 · by Wayne County Lyme Disease Task Force

Lyme Disease is the most common vector-borne illness in the United States.  However, ticks also carry many other bacterial, protozoal, viral and parasitic infections that can be transmitted through the same tick bite.  These co-infections “can complicate the treatment and management of the primary infection and lead to a longer-lasting, more devastating illness,” according to Dr. Daniel Cameron, President of ILADS.  Co-infections may be difficult to diagnose because many of the co-infection symptoms are often attributed to Lyme Disease.  Dr. Joseph Burrascano Jr., board member of the International Lyme and Associated Diseases Society (ILADS) stresses that the “diagnoses of tick-born co-infections remains a clinical one,”  based on signs and symptoms and a history of exposure to blacklegged ticks.

Babesiosis:  caused by a parasite that infects the red blood cells.  The organism can be transmitted through a tick bite or contaminated blood transfusion.  Symptoms are often flu-like and include high fever, irregular fevers, chills, sweats, lethargy, headaches, nausea, body aches and fatigue.  The disease may also cause a specific type of anemia, called hemolytic anemia, since the parasites infect and destroy red blood cells.

Bartonella:  caused by a bacteria carried by fleas, body lice and ticks.  Early symptoms usually include fever, fatigue, headaches,  swollen glands, enlarged lymph nodes and sore throat.  Some patients may present with a streak-mark rash, which has the appearance of stretch marks.  Other key symptoms may include insomnia, seizures, encephalitis, gastritis, lower abdominal pain, and sore soles of the feet.

Ehrlichiosis:  caused by a parasite that infects and kills white blood cells.  Many patients experience flu-like symptoms such as fatigue, fevers, headaches and muscle aches.  More severe symptoms may include vomiting, confusion, anemia, decreased white blood cells, seizures, encephalopathy, meningitis, elevated liver enzymes and even death.

Anaplasmosis:  caused by a bacterial infection and shares the same symptoms as Ehrlichiosis.

STARI (southern tick-associated rash illness):  a Lyme-like disease believed to be transmitted by the Lone Star tick.  However, the causative agent has not been clearly identified and there is no commercial test available.  Symptoms may include a rash (similar to those seen in Lyme Disease), fevers, headaches, stiff neck, joint pain and fatigue.

Powassan Virus:  caused by a flavi virus.  Common symptoms include fever, headache, nausea, vomiting, stiff neck, sleepiness and weakness.  More severe symptoms may include confusion, seizures, memory loss, encephalitis and long-term neurologic problems.

Tularemia:  caused by a bacterial infection.  Symptoms may include headaches , chills,  skin ulcers, swollen lymph nodes, inflamed eyes, sore throat, mouth sores, pneumonia, diarrhea and vomiting.

Other tick-borne co-infections include Colorado Tick Fever, Tick-borne Relapsing Fever, Q Fever, Rocky Mountain Spotted Fever and Tick Paralysis.  This list is not all-inclusive as new tick-borne diseases continue to be discovered.

Kids and Lyme Disease

January 9, 2017 · by Wayne County Lyme Disease Task Force

“The number of reported Lyme Disease cases, occurring annually, has more than tripled over the past 10 years, with children most at risk for the disease,” according to the Centers for Disease Control and Prevention (CDC).  Children are especially susceptible to becoming infected with Lyme Disease and its co-infections because of the amount of time spent outdoors.  “The highest infection rate occurs in children, ages 5 to 9.  Overall, the disease is most common among boys, ages 5 to 19,” according to the CDC.

“While treating the medical aspect of the disease is paramount, for children and adolescents with chronic Lyme Disease, medical treatment alone is often not enough.  Many of these children have Lyme related psychiatric symptoms or educational impairments.  Their serious symptoms, combined with the duration of the illness often leads to gaps in their development.  Their isolation can leave them lonely, and inhibit their ability to interact with peers, ” states Sandy Berenbaum, LCSW, BCD in a letter published in Lyme Times Children’s Treatment Issue1.

Because the symptoms of Lyme Disease can be non-specific, adults may not realize a child is ill.  The most common symptoms in children and adolescents include headaches, fatigue unrelieved by rest, gastrointestinal problems, sleep disturbances, joint and muscle pain, poor concentration, inability to focus, mood swings, sudden behavioral changes, tics, light and/or sound sensitivity and new onset of anxiety disorders2.  Other symptoms may include poor short-term memory, difficulty reading and/or writing, confusion, fevers, chills and dizziness.

The more severe symptoms of Lyme Disease meet the same criteria for one or more other illnesses, allowing the disease to progress untreated.  Many children and adolescents have been misdiagnosed with anxiety disorder, depression, anorexia nervosa, AD/HD, Obsessive Compulsive Disorder, Tourettes and  psychosis.

Lyme pediatric specialist Charles Ray Jones, MD documented gestational Lyme Disease in some children he thinks were infected in utero who presented with symptoms including frequent fevers, increased incidence of ear and throat infections, increased incidence of pneumonia, irritability, joint and body pain, poor muscle tone, gastroesophageal reflux, small windpipe (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities and psychiatric manifestations3.

Lyme Disease may negatively impact a child’s ability to perform academically because the disease can contribute to learning disabilities and behavioral problems.  However, children may qualify for special education accomodations or services.  Sandy Berenbaum, LCSW, BCD also recommends unlimited time for testing, separate testing locations, reading tests to students and being excused from a percentage of homework to help children with Lyme Disease caused learning disabilities4.

1“Adolescents and Lyme Disease.” Daniel Cameron MD. Web. 19 Feb. 2016
2Berenbaum, S., LCSW, BCD. (n.d.). Tick-Borne Disease In Children And Adolescents A Medical Illness/ A Multidisciplinary “Cure”
3“Children with Lyme Disease.” LymeDisease.org. Web. 19 Feb. 2016. https://www.lymedisease.org/lyme-basics/lyme-disease/children
4Berenbaum, S., LCSW, BCD. (n.d.). Kids and Lyme Disease How It Affects Their Learning

Blood Tests

January 6, 2017 · by Wayne County Lyme Disease Task Force

A diagnosis of Lyme Disease should be based on symptoms, physical findings and exposure to infected ticks.  

A negative blood test does not mean you do not have Lyme Disease.

There are many reasons why someone who has Lyme Disease may have a negative test result1:

  • Length of infection (during the first 4-6 weeks of infection, most people have not yet developed the antibody response that the test measures2)
  • Low or nonexistent antibody levels caused by early treatment with antibiotics
  • A co-infection may be present in the blood and not the Lyme bacteria
  • Infection may be caused by a strain of Borrelia burgdorferi (Lyme Bacteria) that is not covered in testing
  • Immune system may be suppressed

The most commonly used two-tiered testing for Lyme Disease are:

  • ELISA (enzyme-linked immunosorbent assay)
  • Western blot

Unfortunately, numerous studies have shown that the ELISA test is not sensitive enough for screening and often misses the infection.  In a study3, published by Raphael B. Stricker and Lorraine Johnson from the International Lyme and Associated Diseases Society (ILADS), it was found that “the sensitivity of the two-tier approach in Lyme Disease patients tested at least 4 to 6 weeks after infection is only 44% to 56%, which is inadequate for a clinical diagnostic test” and that “testing for Lyme Disease remains problematic.”  Holly Ahern, Associate Professor of Microbiology at SUNY Adirondack, stated, “We’re missing easily half of the cases of Lyme Disease.  If you flipped a coin, it’s about as reliable.”

Because of the unreliability of the ELISA screening, Lyme Disease organizations and many Lyme-literate doctors , like Joseph J. Burrascano Jr., MD, suggest that patients skip the ELISA and specifically request the Western Blot.  ILADS suggests that the Western Blot screening “should be performed by a laboratory that reads and reports all of the bands related to Borrelia Burgdorferi4.”

Other tests that are used to diagnose Lyme Disease are:

  • Polymerase chain reaction (PCR) – a highly accurate test when the Lyme DNA is detected, however, it does produce many false negatives because Lyme bacteria are sparse and may not be in the sample tested.
  • Antigen capture – a detection test that looks for a unique Lyme protein in body fluids (e.g. blood, urine, joint fluid).  People who test negative on other indirect tests may test positive on this test.
  • CD57 – a test that measures the levels of a subset of Natural Killer cells and is used as a marker to measure the level of active infection.

Another extremely important component in the treatment of Lyme Disease, is whether or not a co-infection is present.  An increasing number of ticks have been found to carry and transmit other infectious agents such as Babesia, Ehrlichia and Bartonella (click here for more on co-infections).  Tell your doctor that you want to be tested for these co-infections.

To date, there is no test available that can positively rule out Lyme Disease.  However, the following is a list of labs that specialize in the testing of tick-borne infections.  These labs are licensed and monitored by the Centers for Medicare and Medicaid Services (CMM), part of the Department of Health and Human Services, through the Clinical Laboratory Improvement Ammendments (CLIA).  Several labs have also received accreditation by the College of American Pathologists (CAP) whose goal is to improve patient safety by ensuring laboratories meet or exceed regulatory requirements.

  • Advanced Laboratory Services (CLIA #39D1102884)
  • Clongen Laboratories (CLIA #21D1032144)
  • Fry Laboratories (CLIA #03D1026968)
  • Galaxy Diagnostics (CLIA #34D2027997)
  • IGeneX (CLIA #05D0643914)
  • Imugen (CLIA #22D0650196; CAP Accredited)
  • Immunosciences Lab (CLIA #05D0642471; CAP Accredited)
  • LabCorp (CLIA #34D0655205)
  • Medical Diagnostics Laboratories (CLIA #31D0938156; CAP Accredited)
  • Stony Brook School of Medicine (CLIA #33D0654233)

    Disclaimer: The inclusion and/or omittance of a laboratory shall not be construed as a particular bias toward any organization by the Wayne County Lyme Disease Task Force.  This information is intended solely as a resource tool to assist you in finding a laboratory that provides tick-borne illness testing.

    TWO-TIERED LAB TESTS MISS MORE THAN 50% OF THE CASES OF LYME DISEASE5

    Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic
    Johnson L, Stricker RB. Minerva Med. 2010; 101: 419-25

    The most commonly used tests to diagnose Lyme Disease are the ELISA (enzyme-linked immunosorbent assay) and the Western Blot.  However, studies find that these tests are not very accurate and may miss a diagnosis  in more than 50% of patients.

    The most common tests for Lyme disease measure the patient’s antibody response to infection. When your body is invaded by the Lyme spirochetes, your immune system makes antibodies to fight the infection. Tests that measure antibody levels are indirect tests. They measure the body’s immune response to infection rather than the actual presence of bacteria.

    The Centers for Disease Control recommends two-tiered antibody testing for Lyme disease. The first step is an ELISA test. If positive, it is followed up with a Western blot. The CDC recommends two-tiered tests for HIV/AIDS as well. However, the AIDS two-tiered tests have a sensitivity of 99.5%, meaning that they catch nearly every case. Unfortunately, in Lyme disease the two-tiered approach has a sensitivity of less than 50%, meaning that it misses more than half of the cases.

    Sensitivity

    (The chart above is adapted from Stricker, R. and Johnson, L., Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic.  Minerva  Med. 2010; 101: 419-25.)

    There are a number of reasons for the difference. The most important one is that the current ELISA tests are not sensitive enough for screening. Studies by the College of American Pathologists (CAP) concluded that the currently available ELISA tests for Lyme do not have adequate sensitivity to meet the two-tiered approach recommended by the CDC for surveillance.

    In his research, Dr. Sam Donta has observed that 52% of patients with chronic Lyme disease are found negative by ELISA but positive by Western blot. This corresponds with the published findings of LymeDisease.org’s survey of over 5,000 patients with chronic Lyme disease. The survey found that 30% of patients were diagnosed by two-tiered serology and 24% were diagnosed by Western blot alone.

    1“Choosing A Lyme Disease Test.” Daniel Cameron MD. Web. 29 Feb. 2016
    2“Lyme Disease Is a Clinical Diagnosis, Based on Your Medical History, Symptoms and Exposure to Ticks.” LymeDisease.org. Web. 01 Mar. 2016.
    3Stricker, Raphael B., and Lorraine Johnson. “Lyme Disease: The next Decade.” Infection and Drug Resistance. Dove Medical Press. Web. 01 Mar. 2016
    4“Basic Information about Lyme Disease.” ILADS.org. ILADS. Web. 01 Mar. 2016.
    5“Two-Tiered Lab Tests Miss More Than 50% Of The Cases Of Lyme Disease.” Lymedisease.org. Web. 29 Feb. 2016

Patient Checklist

January 6, 2017 · by Wayne County Lyme Disease Task Force

Lyme Disease is called the “Great Imitator” for its ability to mimic symptoms of over 150 other diseases.  Without the appearance of a “bulls-eye” rash, diagnosing Lyme Disease can be extremely challenging and many people are often misdiagnosed with other diseases.  A Lyme Disease diagnosis should be based on clinical symptoms, physical findings and exposure to infected ticks.  A negative blood test result DOES NOT mean you do not have Lyme Disease.

You can assist your doctor in making a correct diagnosis by keeping a record of all you physical and psychological symptoms.

Before visiting your doctor…

  1. Send the tick for testing
    If you remove a deer tick from yourself, your family or pet, you may want to have it tested. There are several labs available that will test a tick for Lyme Disease. Important: If symptoms of infection begin, seek medical attention immediately.  DO NOT wait for test results.
  2. Take photos of the rash
    The typical rash associated with Lyme Disease is the “bulls-eye” rash. However, the rash is seen in fewer than 50% of diagnosed cases.  It may also present in other forms, such as a round or oval reddish rash.  If the “bulls-eye” rash is present, it is a definitive diagnosis of Lyme Disease and treatment should begin immediately.  It is important to take photos of the rash area so you can show them to your doctor in case the rash disappears before your appointment.
  3. Make note of your symptoms
    There are certain symptoms that are characteristic of Lyme disease. Be sure to inform your doctor if you’ve experienced the following: strange rashes, flu-like symptoms, sore or stiff joints/bones, muscle aches, extreme fatigue or headache.
  4. Try to remember when and how you were infected
    If you’ve spent time outdoors hunting, camping, hiking, gardening, etc., you are at risk of contracting Lyme Disease. Knowing when you may have been exposed to Lyme Disease will help your doctor diagnose and treat the infection.
  5. Keep a timeline of your symptoms
    Keeping a record of your symptoms can help your doctor to assess your condition and eliminate other potential illnesses.  LymeDisease.org has an interactive symptom checklist to help document common Lyme Disease symptoms for your doctor
  6. Use the right lab for blood testing
    To date, there is no test available that can positively rule out Lyme Disease.  However, the following is a list of labs that specialize in the testing of tick-borne infections.  These labs are licensed and monitored by the Centers for Medicare and Medicaid Services (CMM), part of the Department of Health and Human Services, through the Clinical Laboratory Improvement Ammendments (CLIA).  Several labs have also received accreditation by the College of American Pathologists (CAP) whose goal is to improve patient safety by ensuring laboratories meet or exceed regulatory requirements.

    • Advanced Laboratory Services (CLIA #39D1102884)
    • Clongen Laboratories (CLIA #21D1032144)
    • Fry Laboratories (CLIA #03D1026968)
    • Galaxy Diagnostics (CLIA #34D2027997)
    • IGeneX (CLIA #05D0643914)
    • Imugen (CLIA #22D0650196; CAP Accredited)
    • Immunosciences Lab (CLIA #05D0642471; CAP Accredited)
    • LabCorp (CLIA #34D0655205)
    • Medical Diagnostics Laboratories (CLIA #31D0938156; CAP Accredited)
    • Stony Brook School of Medicine (CLIA #33D0654233)

 

Lyme Disease Myths

January 5, 2017 · by Wayne County Lyme Disease Task Force

MYTH:  LYME DISEASE ALWAYS CAUSES A BULLS-EYE RASH
FACT: Less than 50% of people who have been infected with Lyme Disease will develop a “bulls-eye” rash1, the most common rash associated with Lyme Disease. The Erythema Migrans rash of Lyme Disease can also take many different forms: the rash may not be circular; there can be many rashes at once; and the rash does not have to be at the site of the tick bite. The rash may also resemble other skin conditions, like those associated with lupus, contact dermatitis or a spider bite.  However, if the “bulls-eye” rash is present, you have Lyme Disease and treatment should be started immediately. 


MYTH:  YOU WILL KNOW IF YOU HAVE BEEN BITTEN BY A TICK
FACT: Tick bites are painless because of a numbing agent in the tick’s saliva. Fewer than 50% of patients diagnosed with Lyme Disease recall a tick bite2.


MYTH:  YOU DON’T HAVE LYME DISEASE BECAUSE THE BLOOD TEST WAS NEGATIVE
FACT:  The CDC stresses that a diagnosis of Lyme Disease should be based on symptoms, physical findings (e.g. rash) and exposure to infected ticks3.  They have stated that their surveillance criteria is used to “establish uniform criteria for disease reporting and should not be used as the sole criteria4” in diagnosing and treating Lyme Disease.  A negative test result does not mean you don’t have Lyme Disease.  There may not have been time for antibodies to develop; the immune system may be suppressed; or the person may be infected with a strain the test doesn’t measure5.  Dr. Steven E. Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey says, “You may test negative right after a bite, but positive several weeks later.”


MYTH:  IF YOU HAVE BEEN INFECTED WITH LYME DISEASE, YOU CAN’T BE INFECTED AGAIN
FACT: Lyme Disease is a bacterial infection, which means there is not limit on the number of times you can be infected.  If you are exposed to the bacteria again, through another tick bite, you can become reinfected and  require treatment.


MYTH:  LYME DISEASE IS FOUND MOSTLY IN CONNECTICUT
Lyme Disease has been found all across the United States, with a particular concentration in the Northeast. According to the CDC, in 2014, 96% of confirmed Lyme Disease cases were reported from just 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia and Wisconsin6. The state of Pennsylvania ranked #1 in 2014 with the most Lyme Disease cases.  However, the CDC also acknowledges that this number does not reflect every case of Lyme Disease that is diagnosed in the US every year, since only a fraction of the illnesses are reported.  Paul Mead, MD, MPH, Chief of Epidemiology and Surveillance for the CDC stated, “We know that routine surveillance only gives us part of the picture, and that the true number of illnesses is much greater.”  After conducting two studies, the CDC suggested that the number of people diagnosed with Lyme Disease each year in the US is around 300,0007.

1“Top 10 Myths About Lyme Disease.” Lyme Research Alliance | A Non-Profit Research, Education and Advocacy Network. Web. 20 Feb. 2016.
2“Basic Information about Lyme Disease.” ILADS. Web. 20 Feb. 2016.
3“Lyme Disease.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 18 Nov. 2015. Web. 20 Feb. 2016.
4“Health Care Providers.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 04 Nov. 2015. Web. 20 Feb. 2016.
5https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
6“Data and Statistics.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 24 Sept. 2015. Web. 20 Feb. 2016.
7“How Many People Get Lyme Disease?” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 30 Sept. 2015. Web. 20 Feb. 2016.

 

 

 

Quick Facts About Lyme Disease

January 5, 2017 · by Wayne County Lyme Disease Task Force

PENNSYLVANIA IS #1 IN DIAGNOSED CASES OF LYME DISEASE FOR THE PAST FIVE YEARS
In 2015, the PA Department of Environmental Protection published a study showing “confirmation of the high risk of Lyme Disease in every county of the Commonwealth.” The study also confirmed the presence of two other human pathogen diseases, Babesiosis and Anaplasmosis in PA blacklegged ticks.


THE BACTERIA THAT CAUSES LYME DISEASE IS BORRELIA BURGDORFERI
There are five subspecies of Borrelia Burgdorferi, over 100 strains in the US and 300 strains worldwide.  It is an invasive bacteria that can penetrate virtually any organ or system in the body, including the brain and central nervous system, joints, muscles and heart.


LYME DISEASE IS THE FASTEST GROWING VECTOR-BORNE, INFECTIOUS DISEASE IN THE UNITED STATES
The CDC estimates that 329,000 cases occur in the United States every year. CDC studies have found that reported cases underestimate its true incidence by a factor of ten, indicating that tens of thousands of residents in PA may be infected with Lyme Disease each year.


STANDARD LYME DISEASE TESTS MAY FAIL TO PROPERLY DIAGNOSE OVER HALF OF POSITIVE CASES
A recent report published by the PA Task Force on Lyme Disease and Related Tick-Borne Diseases concluded that “the most critical research gap is the lack of a gold-standard test for Lyme and for other tick-borne infections; a test that can quickly and accurately diagnose the disease, and prove or disprove ongoing persistence.”


LYME DISEASE IS CALLED “THE GREAT IMITATOR”
Symptoms often mimic those of many other diseases. Misdiagnoses include: Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Fibromyalgia, Alzheimer’s Disease, ADD/ADHD, depression, anxiety, Parkinson’s Disease, mental illness, Chronic Fatigue Syndrome, Lou Gehrig’s Disease, carpel tunnel syndrome and more.  There are over 150 common Lyme Disease Symptoms that are core symptoms of other diseases.


Tick Identification

January 4, 2017 · by Wayne County Lyme Disease Task Force

Black-legged Tick (lxodes scapularis)

Black Legged Tick photo source: CDC

Black Legged Tick
photo source: CDC

engorged deer tick

Engorged deer tick

The Black-legged tick (also known as the deer tick) is found throughout the northeastern and upper midwestern United States.  It transmits Lyme Disease and other tick-borne co-infections like Babesia, Anaplasmosis and Powassan Disease.  Lyme Disease transmission can occur as long as ticks are active, which is usually from early spring to late fall. However, adult ticks may be out any time during the winter, if the temperatures are above freezing. The adult female deer tick is about 3.5mm long and an adult male is slightly smaller. Nymphs are much smaller than adult deer ticks, at about 1.5mm (or the size of a poppy seed) and consequently more difficult to spot and remove.


Lone Star Tick (amblyomma americanum)

Lone Star Tick photo source: CDC

Lone Star Tick
photo source: CDC

The Lone Star tick is found throughout the southeastern and eastern United States.  It transmits Ehrlichia, Tularemia and STARI.  It is also suspected of carrying Lyme Disease and Rocky Mountain Spotted Fever. The adult female is distinguished by a white dot or “lone star” on her back.  These ticks are very aggressive and are known to move long distances in pursuit of a host.


American Dog Tick (dermacentor variabilis)

American Dog Tick photo source: CDC

American Dog Tick
photo source: CDC

The American Dog tick is one of the most frequently encountered ticks.  It is predominantly found east of the Rocky Mountains but has also been found in the eastern United States.  Adult ticks can transmit Rocky Mountain Spotted Fever and Tularemia.  Females have a large silver-colored spot behind the head and male ticks have fine silver lines on their backs.

Tick 101

January 4, 2017 · by Wayne County Lyme Disease Task Force

TICKS TRANSMIT LYME DISEASE
The Blacklegged tick (commonly know as the deer tick) is the primary carrier of the bacterium that causes Lyme Disease, which is transmitted to humans through the bite of an infected tick.  Both adult and nymph deer ticks can transmit infections. Although adult deer ticks have a higher rate of infection, the nymph produces more disease because of its small size and difficulty in finding on the body.  An adult female deer tick is about 3.5mm long and an adult male is slightly smaller.  Nymphs are much smaller than adult deer ticks, at about 1.5mm (or the size of a poppy seed) and consequently more difficult to spot and remove.deer tick sizes


MOST PEOPLE NEVER SEE THE TICK THAT BIT THEM
Ticks like to hide in warm areas of the body, like the groin, armpits, navel, head and neck area and behind the ears. You will also often find them around a clothing barrier, like a sock line, underwear line or on the backs of knees where your shorts stop.


TICKS CAN TRANSMIT OTHER DISEASE CARRYING ORGANISMS
Along with Lyme Disease, ticks carry and may transmit other co-infections such as Babesiosis, Bartonella, Ehrlichiosis and Anaplasmosis. Most people who have Lyme Disease also have one or more co-infections.


TICKS ARE ACTIVE IN THE WINTER
Cold winter temperatures do not necessarily kill ticks and heavy winter snowfalls acts like a layer of insulation. Adult deer ticks actually begin their feeding activity around the time of the first frost.  During cold weather, ticks will take shelter under leaf litter or tree bark. Here they will stay until temperatures rise above freezing and then crawl out onto vegetation and wait for a passing animal or human. “Temperatures have to drop below 10 degrees F for a long time in order for ticks to start dying off,” according to Michael W. Dryden, DVM, PhD, Professor of Veterinary Parasitology at Kansas State University. “And even when temps drop below freezing, they’re still out there. They may not be as efficient at attaching themselves to a host, but they’re still alive.”


TICKS DO NOT JUMP, FLY OR DROP FROM TREES
Ticks wait on the tips of grasses, shrubs and bushes for an animal or person to walk by and then they climb onto their host.  Ticks crawl, and they naturally crawl up to try and attach themselves around the head and ears of the host. If you find a tick attached to your head or back, it most likely started out on the foot or leg and crawled up the body.


TICKS ARE NOT INSECTS
Most people think that a tick is an insect, but ticks are actually small arachnids like spiders, scorpions and mites.  They require blood meals to complete their life cycle of egg, larva, nymph and adult.  Although they will eventually die if they do not get a blood meal, many species can survive a year or more without feeding.


TICKS DO NOT EMBED UNDER THE SKIN
When a tick finds a feeding spot, it pierces the skin with its mouthpart embedded tickand inserts its feeding tube.  The feeding tube has barbs which help keep the tick in place.  Some species secrete a cement-like substance that keeps the tick firmly attached during the meal.  After feeding, most ticks drop off the host and prepare for the next life stage.


TICKS FIND THEIR HOSTS BY DETECTING CARBON DIOXIDE
Using a process called “questing,” a tick will pick a place to wait for a host by identifying a well-used path.  Here it will sit on a blade of grass or twig, with its first pair of legs extended.  A tick’s legs can detect carbon dioxide from a passing animal or person.  They can also sense body heat, moisture, vibrations and body odor.  Some species can even detect shadows.  When the host brushes the area where the tick is waiting, it quickly climbs aboard and latches onto the skin.


tick removal harvard

photo source: Harvard Medical School

THERE IS A CORRECT WAY TO REMOVE A TICK
The best and safest way to remove an embedded tick is with a proprietary tick removal tool or pointy tweezers. The tick needs to be grasped by the head, as close to the skin as possible, and pulled upward with steady, even pressure. Do not twist the tick or squeeze the body. Do not use nail polish, petroleum jelly or matches to try and remove the tick.  This usually forces the tick to burrow deeper. Disinfect the bite area and wash your hands.  Save the tick for testing in a small bottle or plastic bag with a damp cottonball.


PERMETHRIN AND DEET HELP REPEL TICKS
The CDC recommends treating clothing with Permethrin to help repel ticks. Treated items remain effective through several washings. Commercially treated tick repellent clothing that lasts through approximately 70 washes, is also available. The CDC also recommends that exposed skin be treated with a product that contains 20 to 30% DEET, in conjunction with wearing treated clothing.


MOST TICKS ARE BORN UNINFECTED WITH LYME DISEASE
Deer ticks hatch from eggs and have three active stages: larvae, nymph and adult. During each stage, the tick will feed once. Each time they feed, they have an opportunity to become infected, with the Lyme bacteria, from the host they feed upon.


THE LONGER A TICK STAYS ATTACHED, THE MORE LIKELY IT WILL TRANSMIT DISEASE
Experts disagree about how long it takes a tick to transmit Lyme Disease. The CDC says that in most cases, the tick must be attached more than 24 hours. Dr. Daniel Cameron, MD, MPH, a nationally recognized leader in the diagnosis and treatment of Lyme disease and other tick-borne illnesses and the current president of the International Lyme and Associated Diseases Society (ILADS) believes that ticks only need to be attached for several hours and do not need to be engorged in order to transmit a disease. LymeDisease.org, an advocacy, education and research organization, reported that in some research studies, 5-7% of nymphs transmitted the Lyme bacteria in less than 24 hours and one case of Lyme Disease, transmitted after only six hours of tick attachment.


WASHING CLOTHES IN HOT WATER WILL NOT KILL TICKS
According to tick expert Thomas Mather, PhD, of the University of Rhode Island, “Washing, even in hot water, will not kill ticks. Only dry heat will.”  Immediately after being outside, take off clothes and put them in the dryer on high heat for 15 minutes.

Prevention

January 3, 2017 · by Wayne County Lyme Disease Task Force

Reduce your chances of being bitten by a tick by following some simple rules:

  • Be aware of your surroundings and avoid areas with high grass and leaf litter.  Ticks are also likely to be found on stonewalls, wood piles and bushes.
  • Wear light colored long pants and a long-sleeved shirt.  Tuck you pants into your socks to form a barrier and keep ticks out.
  • Use effective tick repellents:
    • Permethrin is an effective repellent that can be used on clothing, footwear and camping gear.  You can also purchase Permethrin-treated clothing that repels and kills ticks and retains its effectiveness after laundering.
    • DEET is also effective against ticks and can be applied directly on the skin.  Do not use DEET in concentrations greater than 30% directly on the skin.  Do not use DEET on infants younger than two months old.
    • Other repellents that may be effective against ticks are Picaridin, oil of lemon eucalyptus and IR3535.  Use the EPA’s search tool to help find and insect repellent that is right for you.
  • Perform a tick check when you come indoors.  Pay special attention to the head, armpits, groin and back of knees.  Remove any ticks immediately and properly.
  • Shower within a few hours of being outside.  Use a rough cloth or shower sponge to help remove unattached ticks.
  • Immediately place the clothing you wore outside in the dryer for 15 minutes on high heat.
  • Check your pets for ticks.  Do not allow pets on your be or upholstered furniture.
  • Consult your veterinarian about treating your pets with tick repellents.

Tick Protection Products

  • Permethrin (effective on clothing, footwear and camping gear; lasts up to six weeks or six washings)
  • IR3535 (DEET free; safe for use on infants and children)
  • Picaridin (DEET free; may be used on skin and clothing, etc.)
  • Oil of lemon eucalyptus (should not be used on children under 3 years old)
  • Cedar oil (may be used on skin, clothing, children and pets)
  • Pre-treated clothing
  • Send your own clothing to be treated
  • Tick tubes for lawn and garden

Lifestyle Tips

January 3, 2017 · by Wayne County Lyme Disease Task Force

The chronic inflammation caused by Lyme Disease may cause joint pain, muscle pain, brain fog, fatigue and more.  A decrease in symptoms may be achieved by limiting the body’s inflammatory responses to Lyme Disease and tick-borne illnesses with some simple lifestyle changes to your daily diet and exercise routine.

  • Remove gluten, dairy and sugar from your diet, which are highly pro-inflammatory foods
  • Consume a diet that consists of mostly lean proteins, fruits and vegetables and foods that are high in healthy fats and have anti-inflammatory properties like fish, flax oil and avocados
  • Consume foods that are high in fiber, like beans, broccoli and berries to help detox the bowels
  • Drink at least 64 ounces of water daily, to help flush out toxins and waste
  • Avoid caffeine, alcohol and saturated fats
  • Be sure to get 7-9 hours of sleep per night
  • Engage in gentle exercises, like yoga, swimming or walking several times a week
  • Take a high-quality probiotic that contains at least 8 different bacterial species, including the core five: L. Plantarum, L. Acidophilus, L. Brevis, B. Lactis, and B. Longum.
  • Take a good multivitamin that supports the immune system
  • Add good quality supplements to your diet like Japanese knotweed, curcumin and a high-quality fish oil to help reduce inflammation
  • Take an Epsom salt bath, which may help relax the nervous system and detox the body
  • Try alternative pain therapies such as acupuncture and shiatsu massage

Disclaimer: These tips are for informational purposes only and are not intended to provide health or medical advice regarding the treatment of any illness or disease.  Any information presented is not intended to take the place of a consultation with a health care professional.

 

Patient Advocacy

January 2, 2017 · by Wayne County Lyme Disease Task Force

One fact is certain, Lyme Disease is the fastest growing vector-borne illness in the United States.  “But nearly everything else about Lyme disease—the symptoms, the diagnosis, the prevalence, the behavior of the Borrelia spirochete after it infects the body, and the correct approach to treatment—is contested bitterly and publicly. Even the definition of Lyme disease, and the terminology used to describe it, has fueled years of acrimonious debate.1”

On one side of the medical controversy is those who that say Lyme Disease is easy to diagnose, usually cured with 3 – 4 weeks of antibiotic treatment and that relapses are rare.  On the opposite side of the spectrum are those who believe that the lingering, sometimes debilitating, symptoms are due to a continuing Lyme Disease infection, which may be made worse by tick-borne co-infections.

The results of this heated battle:

  • delays in diagnosis and treatment
  • frustration on both the part of the patient and physician
  • continued suffering due to persistent symptoms
  • confusion regarding treatment protocols

“The diagnosis and treatment options for Lyme Disease and co-infections is continually evolving.  It is imperative that patients and/or family and friends educate themselves and become and advocate for their health rights.2”

 The American Hospital Association Patient Bill of Rights

“The patient has the right to make decisions about the plan of care before and during treatment,
and is entitled to the chance to discuss and request information about the specific procedures
and/or treatments, the risks involved, the possible length of recuperation and the
medically reasonable alternatives and their risks and benefits.”

1Specter, Michael. “The Lyme Wars – The New Yorker.” The New Yorker. 1 July 2013. Web. 18 Mar. 2016.
2PA Lyme Resource Network. Changing the Healthcare Landscape for Lyme and Tick-borne Diseases in Pennsylvania. North Wales, PA: PA Lyme Resource Network. Print.

The Lyme Disease Controversy

January 1, 2017 · by Wayne County Lyme Disease Task Force

“The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell’s palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as “encephalopathy”). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the “surveillance case definition”. Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient’s treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for “probable Lyme Disease”, will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.”
-Lyme and Tick-Borne Diseases Research Center of Columbia University Medical Center1

1The Lyme Disease Controversy. (n.d.). Retrieved from http://www.columbia-lyme.org/patients/controversies.html

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