Tick-Borne Diseases

Tick-Borne Diseases

Overview of Lyme

Lyme disease is the fastest-spreading vector-borne disease in the United States, with more than 300,000 estimated cases diagnosed annually. Lyme disease has been reported in every state in the United States.

People contract Lyme disease and related co-infections from the bite of an infected tick. The tick becomes infected when it bites an animal that is carrying the infectious bacteria. Then, the tick transmits the bacteria through attachment to a “host,” such as a deer, pet, or person. Ticks are infectious in all stages of their growth cycle, but thought to be most dangerous in the nymph stage, as it may not be seen easily after it attaches to the host.

overview-of-Lyme

Some, but not all, patients manifest a bulls-eye’s rash associated with their tick bite, which is an early warning to seek medical treatment. However, a bulls-eye’s rash always indicates exposure to Lyme disease. When diagnosed early and treated aggressively, antibiotic treatment can be effective. Other cases that remain untreated for more than a month or two may require a longer duration of antibiotic therapy or other protocols to permit patients to regain their health. Unfortunately, even patients who develop the rash do not always receive correct medical treatment.

Why Patients Don’t Receive Correct Medical Treatment


Lyme Mimics Other Diseases

Medical studies have concluded that Lyme disease imitates symptoms of many serious conditions, including multiple sclerosis, ALS (Lou Gehrig’s disease), Lupus, Parkinson’s, Alzheimer’s, and autism. Confusion with these conditions, in addition to Lyme’s association with chronic fatigue, fibromyalgia, poor concentration, and memory problems further obstructs accurate diagnosis. Misdiagnosis may delay proper treatment and has been proven to be seriously detrimental to patient health.

Learn more about Lyme disease symptoms.

Testing is Unreliable

Diagnostic tests for Lyme disease are notoriously unreliable, resulting in false negative and false positive results. Doctors commonly adopt a two-tiered approach to testing for Lyme, so that if the first tier-test, the enzyme-linked immunosorbent assay (ELISA), results are positive, further testing with the more specific and accurate laboratory technique known as immunoblotting is used. This “Western blot” test identifies specific antibody proteins found in Lyme disease. In 2013 in Virginia, the Lyme Disease Information Disclosure Act highlighted the fact that a negative ELISA test does not necessarily mean you do not have Lyme disease.

Controversy within the Medical Community

Debate and controversy within the medical community may further impede and delay both accurate diagnosis and treatment of Lyme-related illnesses. Questions about whether a patient’s symptoms are due to Lyme or another disease, concern about the overuse of antibiotics, and the question of whether persistent or chronic Lyme actually exists are issues that have affected the timely treatment of Lyme patients.

When the Lyme infection persists, the original flu-like symptoms are often replaced with a myriad of other symptoms that can include fatigue, Bell’s palsy, sore and swollen joints, body aches, pain, severe headaches, swollen lymph nodes, cognitive impairment, and other neurological and cardiologic problems. When symptoms are not fully resolved after a short course of antibiotics, patients and their doctors commonly face additional treatment challenges. Some doctors refer to these persisting symptoms as “post-Lyme syndrome,” and  prescribe symptomatic relief, including painkillers and anti-depressants, which do little to resolve what is possibly an ongoing infection.

Many practitioners have documented excellent, long-term results and a return to healthy functioning from extended antibiotic use. Conversely, other practitioners report that their patients improve with extended antibiotic therapy, only to relapse when treatment is withdrawn. They believe that this evidence shows that Lyme disease is a persistent infection that can elude standard courses of antibiotics.

The medical community’s division over the cause and cure of persistent Lyme disease symptoms illustrates the indisputable and immediate need for unbiased research. The Institute of Medicine (IOM) organized a workshop* in 2010 in an effort to begin the process of resolving these complex issues. Science journalist and author, Pam Weintraub, noted at the workshop, “If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science ̶ pure and unadulterated ̶ that will lead us home.”

Due to the unrelenting efforts of people who are seeking a cure to this epidemic, many research efforts are underway today to improve testing and diagnosis as well as treatments for Lyme and associated diseases.


* Reference to, “Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases,” by Institute of Medicine of National Academies.

Symptoms of Lyme

The clinical symptoms of Lyme disease vary among individuals at initial presentation and during the course of the infection, ranging from a relatively benign skin rash to severe arthritic and neurological disabilities. Lyme disease occurs in stages, with remissions, exacerbations, and different clinical manifestations at each stage. Any organ system can be involved, but the bacteria commonly attack skin, joint, heart, and nerve tissue— including the brain.

Early Stage Symptoms:

Early in the disease process, patients may present with flu-like symptoms including headache, stiff neck, fever, muscle aches, fatigue, and partial facial paralysis (Bell’s palsy). A skin rash called erythema migrans may develop at the site of the bite, but not all people will develop the rash.

Antibiotic treatment can be effective if started early in the disease process. Delayed or inadequate treatment can lead to more serious symptoms, which may be chronic, disabling, and difficult to treat.

Late Stage Symptoms:

Late symptoms may include: “Lyme arthritis” with joint pain and swelling, heart complications, motor and peripheral neuropathies, dizziness, irritability, ADHD-like symptoms, memory and concentration impairment, and migratory muscle, tendon, and bone pain.

Lyme disease is often called “the great imitator” because its symptoms imitate other diseases such as chronic fatigue, fibromyalgia, lupus, multiple sclerosis, Parkinson’s, Lou Gehrig’s (ALS), Alzheimer’s, and autism.


 

FIRST WARNING SIGNS
  • Tick bite
  • Rash – either circular, spreading, or “bulls-eye” – may appear around the bite site; rash does not occur in all cases
  • Flu-like symptoms, followed by intermittent illness
  • Extreme fatigue
JOINTS AND MUSCULOSKELETAL SYMPTOMS
  • Joint pain and/or swelling
  • Stiffness of joints, back, neck
  • Muscle pain, twitching, cramps and weakness
  • Heel pain/plantar fasciitis
  • Tendinitis
  • Jaw pain
NEUROLOGICAL SYMPTOMS
  • Persistent and severe headache
  • Twitching of facial or other muscles
  • Cranial nerve dysfunction/numbness and tingling
  • Peripheral neuropathy
  • Bell’s palsy or partial paralysis
  • Light-headedness or dizziness
  • Poor balance or difficulty walking
  • Burning and stabbing pains
  • Restless legs
  • Memory loss (short or long term)
  • Confusion (difficulty with processing thought)
  • Speech difficulty (slurred or slow, word-finding problems)
  • Seizures/stroke symptoms
  • Blurry or double vision, sight change
  • Sensitivity to light and flashing lights
  • Sound sensitivity
  • Tinnitus (ringing in ears)
PSYCHOLOGICAL SYMPTOMS
  • Mood swings, irritability
  • Unusual depression
  • Panic/anxiety attacks
  • Aggression/rage
  • Obsessive-compulsive behavior
  • Paranoia
  • Suicidal thoughts
  • New onset ADHD
RESPIRATORY / CIRCULATORY SYMPTOMS
  • Recurring bronchial infections
  • Shortness of breath
  • Chest pain/rib soreness
  • Heart palpitations, murmurs, valve prolapse, heart attack
OTHER SYMPTOMS
  • Insomnia or oversleeping
  • Night sweats and/or chills
  • Swollen/painful lymph glands
  • Loss of sex drive
  • Chemical sensitivity/increased allergic reactions
  • Sore throat
  • Weight gain/loss
  • Skin changes/nodules under the skin, dryness

Rashes Associated with Tick-Borne Diseases

Lyme disease has long been associated with the appearance of a circular rash radiating out from the site of an infected tick bite, known as an erythema migrans (EM) rash. Erythema migrans can take many forms. The best-known EM rash is the so-called “bull’s-eye” or target rash, which consists of concentric circles of redness around a central clearing. Unfortunately, not all patients notice this or any kind of rash due to the following:

  • Ticks often bite the scalp, behind the ears, in the middle of the back, or other places that are hard for a patient to inspect.
  • The EM rash may appear as a dark bruise on dark skin and often goes unnoticed.
  • Not all EM rashes look like the classic “bull’s-eye” rash. Many other variations are now being reported, with the most common being a skin lesion that is uniformly red without the rings or target appearance.

Some scientists believe that certain strains of Lyme do not produce a rash at all. In fact, Harvard Medical School’s Dr. Jonathan Edlow reported as early as 2002 that the target or “bull’s-eye” is no longer considered the most common type of rash associated with Lyme disease.

EM rashes can be uniform in color, oozing, blistered, scaly, and in a variety of shapes. They can range from a pink color to shades of deep red, purple, or brown. Generally, neither itching nor pain is present, but occasionally an EM rash can be warm to the touch, burning, itching, or painful. Although lesions are defined, for surveillance purposes, as being greater than 5cm in size, smaller lesions that are culture-positive for B burgdorferi have been reported. Some doctors think that multiple rashes appearing on different parts of the body are a sign of rapidly-spreading infection. Frequent misdiagnoses include ringworm, cellulitis and spider bites.

Learn more from visual examples:
http://phpa.dhmh.maryland.gov/OIDEOR/CZVBD/Shared%20Documents/Lyme_MD_poster_FINAL.pdf

According to the Centers for Disease Control, the EM rash is noticed in 70 to 80 percent of persons who contract Lyme disease. However, other studies have suggested that this percentage may be as low as 50 percent or less. EM rashes may appear in a few days or several weeks after the bite and may recur with antibiotic treatment.

Co-infections of Lyme can also cause rashes. Rocky Mountain Spotted Fever is well-known for the spotted rash it produces on the hands and feet, along with fever and virus-like symptoms. RMSF can be fatal if treatment is not given promptly. Bartonella or cat-scratch fever can cause pink or purple streaks in the skin, which resemble stretch marks. Finally, tularemia can cause ulcerated sores at the site of the tick bite. Other dermatological manifestations of these infections are possible.

Although not every tick-borne infection causes rashes, many do. Therefore, patients should seek immediate medical care if any kind of rash appears anywhere on the body after exposure to ticks.

Tick-Borne Diseases and Children

According to the CDC, children ages 5 to 19 years of age face the highest risk of contracting Lyme disease and other tick-borne infections, with the rate at about three times that of any other group. This risk is likely due to the amount of time children spend playing outdoors, and a lack of awareness of the importance of finding and removing ticks.

While children experience the same range of symptoms as adults, they often do not have the capacity to express and understand what they are feeling. Parents and doctors often dismiss non-specific symptoms of headaches, fatigue, gastrointestinal issues, and behavioral changes as part of growing up. Such dismissal often leads to delayed diagnosis, thereby allowing dissemination of the infection and consequent long-term illness. Preventing tick bites on children is extremely important. Therefore, it is essential to educate ourselves about the infection, its symptoms, and available treatments.

Prevention

To insure the child’s health, tick checks should become a regular part of the outdoor activity, particularly when coming in from outdoors. The caretaker should diligently search for ticks on a child. If found, it is essential that, once properly removed, the tick(s) be tested in a laboratory capable of specifying the type of tick and which infections, if any, each may carry. Tick testing can facilitate a correct diagnosis and immediate treatment when needed.

The following steps are recommended to prevent tick bites in children:

  • Use a 10-30% DEET-based insect repellent for skin and a 0.5% permethrin repellent for clothing. On children, use a repellent that is age appropriate. Before using, check with a physician if the child is under the age of one.
  • Conduct frequent and thorough tick checks on yourself, your children and your pets.
  • Dress children in light colored clothing that covers their arms and legs. Tuck their pants into their socks.
  • Have children avoid playing in tick-infested areas, such as tall grass and dense vegetation.
  • Control ticks around your home by eliminating bird feeders and living places of small rodents.
  • Pets can carry ticks inside from outdoors and expose the family. Brush your dog or cat after they come in from outside. Talk with your veterinarian about the numerous products and medications available to protect your pet from ticks.
  • Shower after all outdoor activities.
  • If you find a tick attached to a child, remove it by using fine-tipped tweezers and place it a zip lock bag for testing. You can find a list of labs that perform this testing here.

For more specifics on insect repellents for skin and clothing, visit What to Use for Tick Repellent | eHow.com

Diagnosis

Diagnosis of children with Lyme disease is a difficult challenge. Initial symptoms are non-specific, including headaches, fatigue and stomach problems. Such ailments are attributable to many conditions. Joint pain may be dismissed as growing pains, mood swings as typical adolescent behavior, and behavioral changes as simply a normal part of growing up. Too often, however, it is not until these symptoms cause serious debilitation, resulting in problematic school absences and tardiness, that the real cause is even sought. Sadly, delayed diagnosis, can allow dissemination of the infection and consequent long-term illness.

Treatment

A child infected with Lyme and other tick-borne diseases is dependent on the parent to navigate the journey through diagnosis and treatment to wellness. Antibiotic treatment as soon as Lyme disease is even suspected may be the physician’s first response. If co-infections exist and are persistent, a Lyme specialist may offer various regimes that address the complexity of the infections. The good news is that many children treated early and aggressively experience a greater return to health than many adult patients. Youthful resilience may play a role in this increased ability to conquer symptoms.

Parents of children with Lyme disease often stretch to the limit their resources of time, energy and money to help their children. Their tenacity and sacrifices enable a life of independence and attainable goals for their children.

To best care for your child:

  • Keep a record of doctor visits, including doctor’s notes, test results and diagnosis. Obtain copies of these documents when possible.
  • Be prepared to share this information as you visit each doctor. Most examinations are too short to adequately evaluate a complex illness. Having this information saves a lot of time, and can reveal a more complete picture.
  • If illness is chronic, work with the school staff to develop a plan that accommodates your child’s needs.
Activities to enhance life during treatment

In cases where Lyme disease has been misdiagnosed or ineffectively treated, there may be long-term impact on a child’s physical and social functioning, as well as on intellectual development. Deficits in attention and memory lead to inconsistent school attendance and performance. According to a NatCapLyme survey[1], 45 percent of parents of children with Lyme disease report that their children missed school more than one day a week, and 42 percent reported that their children were tardy more than once a week.

Adolescents present special diagnostic and treatment challenges, since their new-found desire for privacy, normalcy and independence may prevent full-body tick checks by parents and compliance with keeping doctor appointments and taking prescribed medications. Lyme symptoms such as fatigue, slurred speech, and confusion, can be misinterpreted as the consequence of illegal drug or alcohol use. Sadly, some teenagers do turn to street drugs and alcohol to self-medicate unmanaged neurologic and rheumatologic pain.

Relationships with friends and family become strained for some young people with Lyme disease. Some children are confined at home by their illness. They cease participating in normal activities, such as athletics, hobbies and dating. Persistent illness affects a young person’s ability to participate in normal rites of passage and subsequently affects his or her life. Parents and daily caregivers are the first line of defense and support for these youngsters.

Understanding and acknowledging their limitations, aspirations, fears, and physical struggles can help them feel less isolated. Many parents have formed support groups in which they exchange strategies and techniques to help one another provide the tremendous encouragement, protection, and the mental, spiritual, and physical aid required for their child to return to a healthy, normal childhood.

 


Resources


[1] NatCapLyme online survey of 1,438 respondents, conducted during July 2010.

Historical Perspective

Discovering Lyme

Many believe that the bacterial infection now called “Lyme disease” has been causing illness among humans for thousands of years. Cases were first documented in Europe in the 1880s, but as recently as September 1991, scientists discovered the presence of the Lyme-causing bacteria in a frozen 5,300 year-old mummy found in the Austrian Alps. An autopsy of the mummy conducted by scientists in November 2010, and a DNA analysis conducted the following June, revealed the genetic footprint of Borrelia burgdorferi —making the Iceman called “Oetzi” the earliest known human infected by the bacteria that causes Lyme disease (Hall 2011).

oetzi

After “Oetzi,” there have been many thousands, perhaps millions, of Lyme sufferers. Lyme disease is currently the fastest-spreading vector-borne disease in the United States. According to the U.S. Centers for Disease Control and Prevention (CDC), as many as 300,000 or more new infections likely occur annually.

CDC statistics from 2001 to 2010 place boys between the ages of 5 and 9 at the highest risk for Lyme infection due to more time spent outside or playing with pets. Indeed, children were integral to the identification of Lyme disease as a new, tick-borne bacterial threat during the summer of 1975 in the coastal town of Lyme, Connecticut. A concerned mother noticed an unusual cluster of juvenile rheumatoid arthritis cases and asked Yale University to conduct an investigation. Investigators concluded that an infection was responsible for both the arthritis and the neurological symptoms, such as Bell’s palsy (paralysis of half the facial muscles) and heart rhythm abnormalities, which were emerging among the patients. Many of the affected children reported finding a circular red rash with a central clearing that resembled a target or “bull’s-eye” prior to the onset of their other symptoms. This clue helped investigators realize that the bacteria were probably spreading through the bite of an infected tick, spider, or insect. Eventually, the small deer tick (Ixodes scapularis species) was identified as the culprit.

Finding the Cause

Researchers soon discovered the cause of Lyme symptoms to be a spiral-shaped bacteria called a spirochete. This same class of bacteria also causes syphilis and periodontal disease as well as other ailments (Burgdorfer et al., 1982). The species responsible for Lyme symptoms was named Borrelia burgdorferi after its discoverer, Dr. Willy Burgdorfer of the National Institutes of Health (NIH).

The experts also attributed a plethora of signs and symptoms to Lyme disease. Its manifestations were found to be so broad that it earned the nickname “the great imitator” of dozens of other medical conditions (Pachner, 1988; Blanc & Gebly, 2007). As researchers at a Philadelphia hospital noted in 2000, “Lyme neuroborreliosis is diagnostically challenging because of its diverse manifestations” (Zhang et al., 2000). Frequent symptoms include incapacitating fatigue (Steere et al.,1984), musculoskeletal “joint” pain (Steere et al., 1983, Schmid, 1989, Steere et al., 1988), pain and odd nerve sensations in the extremities (Halperin et al., 1987; Shadick et al., 1994; Weissenbacher et al., 2005; Fallon et al., 1998), and cognitive and mood disorders such as memory loss (Logigian et al., 1997; Krupp et al., 1991; Kaplan et al., 1992), concentration difficulties (Reik et al., 1995, Sigal, 1990; Vrethem et al., 2002) and depression (Logigian et al., 1997; Duray & Steere, 1988.

Impact on Society

Studies have shown that the financial and emotional cost of disseminated Lyme disease can be severe in addition to the many physical afflictions. “Persons with a history of Lyme disease have more musculoskeletal impairment and a higher prevalence of verbal memory impairment when compared with those without a history of Lyme disease. Our findings suggest that disseminated Lyme disease may be associated with long-term morbidity.” (Shadick et al., 1994). Seven years later, researchers announced that patients with chronic symptoms following a bout with Lyme disease suffer a quality of life equal to someone with osteoarthritis or congestive heart failure and worse than someone with Type 2 diabetes or a recent heart attack (Klempner et al. 2001). Finally, March 2008 witnessed the publication of a Columbia University study which reinforced these earlier findings, and added that patients complaining of chronic Lyme disease also suffer fatigue comparable to that caused by multiple sclerosis (Fallon et al., 2008).

Controversy

In addition to the debate over the manifestation of disseminated or chronic Lyme disease, serious dilemmas in the diagnosis and treatment of Lyme disease remain unresolved. Johns Hopkins University announced that a clinical diagnosis of Lyme disease – one based on the patient’s history and symptoms rather than on blood or urine tests – is “still the most appropriate approach,” because “the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests” (Coulter et al. 2005). Current Lyme serological testing is known to lack both sensitivity to the presence of the infection, and specificity, which is the ability to distinguish between Lyme and similar spirochetal infections, such as syphilis and periodontal disease. Unreliable testing can result in false positives and more often, false negative results. This underlies Johns Hopkins’ recommendation to rely on patient history and complaints rather than currently available blood tests for a more accurate diagnosis.

Perhaps the most contentious area of debate revolves around patients who have received a month or more of antibiotics for Lyme disease yet continue to suffer from persistent symptoms. The Infectious Disease Society of America (IDSA) acknowledges in its 2006 treatment guidelines for Lyme and two other tick-borne infections that “unexplained chronic subjective symptoms” persist in “a minority” of patients who have already received “treatment with conventional courses of antibiotics for Lyme disease” (Wormser et al., 2006). Although not offering a firm or thorough explanation for this phenomenon, the IDSA suggests that these symptoms may result from an undiagnosed and untreated tick-borne co-infection—which would produce symptoms similar to Lyme—or even an emotional reaction to the past infection with Lyme. The IDSA authors also note; “In many patients, post treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection. Put simply, there is a relatively high frequency of the same kinds of symptoms in ‘healthy’ people” (Wormser et al., 2006). Thus, Wormser and his co-authors dismiss some patients’ complaints of fatigue, pain, and memory dysfunction due to “the high frequency of identical complaints in the general population” (2006). Accordingly, the IDSA recommends that doctors seek alternative diagnoses for these complaints and provide therapies for symptom relief.

Research has suggested that “post-Lyme syndrome” (as the IDSA prefers to call it) results from an autoimmune reaction to the Lyme bacteria, in which the immune system does not shut down after the Lyme bacteria are eliminated, resulting in damage to healthy, normal body tissues. Studies have shown that some people possess certain genetic traits called HLA-DR4 and HLA-DR2, which result in a severe, persistent, and autoimmune-like arthritic reaction when they are exposed to the Lyme spirochete, whether in a vaccine or in nature (Steere et al., 1990). This theory might explain the depth of suffering that some people experience once infected with Lyme and the ability of Lyme to mimic autoimmune conditions. A significant effort to identify a common genetic marker besides HLA-DR4 and HLA-DR2 among all those claiming to suffer “post-Lyme” symptoms failed (Klempner et al., 2005), leading some to abandon this theory as insufficient to explain “post-Lyme” suffering.

A third explanation for continuing Lyme symptoms, embraced by many physicians and patients, is that the Lyme bacterium is capable of surviving the short-term doses of antibiotics currently administered, making it a persistent infection. A significant number of studies have documented the cultivation of live Lyme spirochetes or their DNA from the bodies of patients who have already received one or more rounds of antibiotics (e.g., Oksi et al., 1999; Breier et al., 2001; Hudson et al., 1998). Some studies, written by prominent members of the IDSA, have posited persistent Lyme infections as the cause of persisting symptoms (Halperin and Heyes,1992; Liegner et al., 1993; Dattwyler et al., 1988; Breier et al., 2001; Steere et al., 1988; Logigian et al., 1990). Still other studies have explored the exact mechanisms by which the spirochetes are believed to survive either antibiotics or the immune system (Klempner et al., 1993; Georgilis et al., 1992; Liang et al., 2002; Diterich et al., 2003; Seiler and Weis, 1996; Murgia et al., 2002; Duray et al., 2005; Brorson and Brorson, 1998; Alban et al., 2000; Barbour et al., 1982; Radolf et al., 1994; Benach, 1999; Barbour and Hayes, 1986; Sadziene et al., 1994; Kurtti et al., 1987; Aberer et al., 1996; Mursic et al., 1996; Embers et al., 2004; Garon et al., 1989; Livengood & Gilmore, 2006; Ma et al., 1991; Dorward et al., 1997; Jackson et al., 2007.

Treatment Strategies

Clinicians who believe that Lyme can be a persistent and relapsing infection often treat their patients with combinations of antibiotics over a long period until symptoms resolve or subside. This is not in accord with the short-term treatment schedules set forth by the IDSA. This alternative approach to treatment has put these physicians, frequently called “Lyme-literate” doctors, at odds with the IDSA, which denies that the Lyme bacteria persists in the human body after a month or two of antibiotic therapy.

Many medical professionals who espouse long-term treatment of a resilient Lyme infection organized themselves into a medical society in 2003 called the International Lyme and Associated Diseases Society (ILADS). They began a dialogue with the IDSA and other sectors of the medical community about the growing threat of Lyme and tick-borne infections, which do not seem to resolve in some patients. Unfortunately, the emotional and heated debate over the possibility of persistent Lyme infection and the best way to provide relief to suffering patients continues. ILADS doctors who disagree with the short treatment recommendations of the IDSA sometimes find themselves investigated and tried by their state medical licensing board for breaking with the IDSA protocol. IDSA’s 2006 Lyme treatment guidelines, quoted above, faced an antitrust, monopolization, and exclusionary conduct investigation by the Attorney General of Connecticut, Richard Blumenthal. The attorney general questioned whether the IDSA ignored crucial and relevant data about the seriousness and persistence of Lyme infections when it formulated its treatment guidelines, evidenced by quoting only two percent of the published literature about Lyme available at the time and ignoring treatment guidelines published two years earlier by the ILADS (Cameron et al., 2004). As a result of the settlement in April 2008, the IDSA agreed to voluntarily review its guidelines by convening an independent review panel. An ombudsman was selected to vet the members of the panel for potential conflicts of interest. After they reviewed the guidelines in their entirety with special attention to the recommendations for post-Lyme disease syndromes, the review panel concluded in 2008 that no changes to the guidelines were needed, insisting the 2006 guidelines were medically and scientifically justified on the basis of all available evidence (Lantos et al., 2010).

As the national debate about Lyme and related diseases continues, NatCapLyme remains committed to informing both the Lyme community and the public about the scientific and political developments surrounding tick-borne diseases so that affected patients may better advocate for their own healthcare.

 


Learn more:

Please note: NatCapLyme does not endorse or necessarily agree with the content found at the following sites.

Published Treatment Guidelines from the International Lyme and Associated Diseases Society (ILADS) published in the National Clearinghouse of Guidelines:

Other websites which may contain useful overviews of the crucial issues related to Lyme:

 


References

  • Aberer E, Kersten A, Klade H, Poitschek C, Jurecka W. 1996 Dec. Heterogeneity of Borrelia burgdorferi in the skin. Am J Dermatopathol 18(6):571-9.
  • Agosta F, Rocca MA, Benedetti B, Capra R, Cordioli C, Filippi M. 2006 Apr. MR imaging assessment of brain and cervical cord damage in patients with neuroborreliosis. AJNR Am J Neuroradiol 27(4):892-4.
  • Alban PS, Johnson PW, Nelson DR. 2000 Jan. Serum-starvation-induced changes in protein synthesis and morphology of Borrelia burgdorferi. Microbiology 146( Pt 1):119-27.
  • Barbour AG, Hayes SF. 1986. Biology of Borrelia species. Microbiol Rev 50(4):381-400.
  • Barbour AG, Todd WJ, Stoenner HG. 1982. Action of penicillin on Borrelia hermsii. Antimicrob Agents Chemother 21(5):823-9.
  • Benach JL. 1999 Dec 10. Functional heterogeneity in the antibodies produced to Borrelia burgdorferi. Wien Klin Wochenschr 111(22-23):985-9.
  • Blanc F, GEBLY [Groupe d’Etude de la. Borréliose de Lyme]. 2007 Jul-Aug. [Neurologic and psychiatric manifestations of Lyme disease] Med Mal Infect 37(7-8):435-45.
  • Breier F, Khanakah G, et al. 2001. Isolation and polymerase chain reaction typing of Borrelia afzelii from a skin lesion in a seronegative patient with generalized ulcerating bullous lichen sclerosus et atrophicus. Br J Dermatol 144(2):387-392.
  • Brorson O, Brorson SH. 1998 Dec. A rapid method for generating cystic forms of Borrelia burgdorferi, and their reversal to mobile spirochetes. APMIS 106(12):1131-41.
  • Burgdorfer W, Barbour AG, Hayes SF, Benach JL, Grunwaldt E, Davis JP. 1982 Jun 18. Lyme disease-a tick-borne spirochetosis? Science 216(4552):1317-9.
  • Cameron D, Gaito A, et al. ILADS Working Group. 2004. Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti Infect Ther 2(1 Suppl):S1-13.
  • Coulter P, Lema C, et al. 2005 Oct. Two-year evaluation of Borrelia burgdorferi culture and supplemental tests for definitive diagnosis of Lyme disease. J Clin Microbiol 43(10):5080-4.
  • Dattwyler RJ, Volkman DJ, et al. 1988 Dec 1. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi. New Engl J Med 319(22):1441-6.

 


© Copyright 2008 NatCapLyme. This article may be reproduced or linked with attribution and without modification.

Co-Infections

In addition to Lyme disease, ticks can be infected with other bacteria, viruses, or parasites, which are referred to as co-infections. More than a dozen tick-borne diseases have been documented to cause serious illness in humans. Co-infections with more than one tick-borne infection are common. NatCapLyme conducted an online survey in July 2010 and found that 46 percent of the 1,433 respondents had been diagnosed with two or more tick-borne infections. Lyme disease and babesiosis were the most common infections.

Lyme disease patients with additional co-infections seem to experience more symptoms and a more persistent illness than those with only Lyme disease. Symptoms of other tick-borne infections can be similar to those of Lyme disease, so these co-infections may go undiagnosed, contributing to ongoing illness despite treatment for Lyme.

Patients with Lyme disease also become more vulnerable to other infections. Mycoplasma, Epstein Barr virus, candida, H. pylori and Chlamydia pneumoniae are quite common infections in patients with Lyme disease. The exact role that other tick-borne diseases and opportunistic illnesses play in the disease course is poorly understood and known treatment options are not always effective.

Research continues to discover more strains of new pathogens in ticks.

Learn more:

Bacteria
Viruses

364D Rickettsiosis

364D Rickettsiosis is a species of Rickettsia bacteria. This bacterium is found in the Dermancentor occidentalis tick, which is more commonly known as the Pacific Coast tick. Ticks carrying 364D Rickettsiosis are most commonly found in northern California and elsewhere on the Pacific Coast.

The infection is spread to humans via bite of the infected tick. Symptoms of 364D Rickettsiosis include fever, malaise, and eschar(s), which is dark, dead skin tissue that eventually sloughs off. There is not a great deal of knowledge about 364D Rickettsiosis in particular, but doxycycline has been proven effective against Rickettsial infections. Antibiotics administered in the first week of illness have shown to be highly effective and have the best outcomes.

Anaplasmosis

Human Granulocytic Anaplasmosis (HGA), or simply, anaplasmosis, is a disease caused by Anaplasma phagocytophilum. The pathogen infects white blood cells and is transmitted by the Lyme disease-causing black-legged Ixodes ticks.

Clinical presentation of anaplasmosis is variable and often includes headaches, fever, muscle pain, and a general feeling of discomfort. Less frequently, patients experience joint pain or involvement of the gastrointestinal tract (nausea, vomiting, and diarrhea), respiratory system (coughing, pulmonary infiltrates, acute respiratory distress syndrome [ARDS]), liver ailments, or central nervous system involvement. A CDC study reports that Anaplasma phagocytophilum possesses unique adaptations to its host’s immune system. The bacterium’s pathogenic mechanisms interact with native cellular processes of neutrophils (white blood cells), which leads to altered neutrophil function, changes to the immune system, severe disease, and opportunistic infections. Presently, more research is needed to better understand the bacterium’s disease-causing mechanisms and its immunological effects, as well as the infection’s variable impact on humans and animals.

Cats and dogs may also contract anaplasmosis, but they cannot directly transmit the infection to humans. Anaplasmosis in pets is evidence that the pathogen is probably present in the surrounding environment, so heightened vigilance of ticks is required.

Anaplasma phagocytophilum was established as a veterinary disease-causing agent in 1932, but wasn’t discovered in humans until 1990. Since then, the incidence of anaplasmosis in humans has greatly increased, and cases in Europe have been recognized as well. Antibodies to the disease are found in humans across the world, suggesting that infection is common, but rarely recognized. Anaplasmosis is treated with antibiotics in both humans and animals.

Babesiosis

Babesiosis is a tick-borne illness caused by the Babesia parasite. Over 100 distinct species have been identified, although only a few are known human pathogens. Babesia replicates in the host’s red blood cells and is spread by the Lyme disease causing black-legged deer tick (Ixodes scapularis). In endemic areas, the disease has also reportedly been transmitted via the placenta and blood transfusions.

Babesia microti is the most frequently implicated species in cases of babesiosis in the United States. Instances of the disease coincide with the natural habitat of the Ixodes tick within the Eastern U.S and the Midwest. In western parts of the country babesiosis is caused by Babesia duncani, though reported cases have been observed in the east as well.

Symptomatically, babesiosis is similar to malaria and typically presents with a gradual onset of flu-like symptoms that include malaise, fatigue, fever, and chills. High fever, drenching sweats, muscle pain, and headaches may follow soon after. As with malaria, these symptoms may persist for a prolonged period of time or abate and recur in intervals. If improperly treated or undiagnosed, the infection may become chronic. Chronic symptoms include general weakness, fatigue, depression, gastrointestinal and psychological symptoms, weight loss, headaches, photophobia (aversion to light), stiff neck, cough, shortness of breath, muscle and joint pain, dark urine, jaundice, and a swollen spleen. This stage of the disease can only resolve with persistent treatment.

Patients co-infected with Lyme disease and babesiosis, immune-compromised individuals, and those without a spleen may experience more severe symptoms than the rest of the population.

Early signs of the disease are largely non-specific, which makes diagnosis difficult. Nevertheless, physicians who see patients from endemic areas presenting with flu-like symptoms especially in summer months should suspect the possibility of babesiosis. Treatment varies among individuals and depends on the symptoms. Those with severe forms of disease should be treated until symptoms no longer persist and the test results are negative for at least two consecutive weeks.

Bartonellosis

Members of the Bartonella genus are Gram-negative rod shaped bacteria that live exclusively inside cells. Bartonella is transmitted via fleas, lice, sand flies, cat scratches, and ticks. Bartonella henselae, the most commonly identified member of the genus, is the causative agent of cat scratch disease. As its name suggests, this disease is often caused by the scratch of a cat; however, it may also be transmitted by ticks and fleas.

Symptoms of Bartonella infection include fever, enlarged lymph nodes, fatigue, headaches, rash, bone pain, and involvement of the heart valve. Culturing an infected heart valve often produces negative results. Less commonly, encephalopathy and inflammation of the retina and optic nerve are observed. Immuno-compromised individuals may experience subcutaneous skin and bone lesions as well as lesions of the liver and spleen.

Diagnosis of Bartonella is based on a clinical history and confirmatory serological tests. The preferred treatment for the disease is antibiotics.

Borrelia Miyamotoi

Borrelia miyamotoi is a spirochete that causes a syndrome similar to tick-borne relapsing fever (TBRF). It is transmitted by the black-leggedIxodes tick, which is also implicated in the transmission of Lyme disease, babesiosis, and anaplasmosis.

This pathogen was first discovered in Japan in 1995, but has since been identified in other parts of the world. In 2011, human infections withBorrelia miyamotoi were reported in Russia, and subsequently in the United States, Europe and Japan. Symptoms are not yet well-described, but most patients experience fever, headache, fatigue, myalgia, arthralgia and nausea.

Because clinical manifestations are non-specific, diagnosis of Borrelia miyamotoi is confirmed by blood smear examination, PCR, antibody assay, and in vitro cultivation. Treatment for Borrelia miyamotoi involves antibiotics.

Coxiella Burnetii (Q Fever)

Q fever is a serious illness caused by the Gram-negative obligate intracellular bacteria Coxiella burnetii. It resides in cattle, sheep, and goats, and is transmitted through the urine, feces, milk, and amniotic fluid of infected animals. Coxiella burnetii is a resilient organism that is resistant to heat, drying, and common disinfectants. Humans become ill through inhalation of dried birthing material and animal excretions. Transmission by ticks, consumption of unpasteurized milk, or through human contact is rare. Humans are particularly susceptible to this disease, which requires only a few organisms to initiate a successful infection.

Q fever can cause both acute and chronic illness. Symptoms of acute disease develop within two to three weeks of exposure and include high fever, severe headache, malaise, myalgia, chills, sweats, non-productive cough, nausea, vomiting, diarrhea, chest and abdominal pain. It is worthwhile to note that close to half of those infected never develop any symptoms at all, and that symptoms may occur in a variety of combinations. Most people with the acute disease fully recover, although some may experience lasting effects, such as inflammation of the liver or heart, pneumonia, or involvement of the central nervous system.

Chronic Q fever develops in less than five percent of patients and may appear within six weeks of the acute stage, or as late as several years post the initial infection. Some chronic cases develop endocarditis, which requires quick diagnosis and a long-term antibiotic regimen to successfully resolve. Other manifestations of chronic disease include aortic aneurisms and infections of the bone, reproductive organs, or liver. Coxiella burnetii may persist in the body after initial infection, causing post-Q fever fatigue syndrome in a small percentage of patients. This syndrome involves recurring fatigue, night sweats, severe headaches, photophobia, joint and muscle pain, mood changes, and difficulty sleeping.

Q fever is a challenging disease to diagnose because it presents with a wide range of symptoms commonly seen in other diseases. Diagnosis is based on signs and symptoms, and confirmed using laboratory testing such as polymerase chain reaction (PCR) to detect bacterial DNA or immunofluorescence assay (IFA) to detect antibodies against Coxiella burnetii. Antibiotics are the treatment of choice.

Ehrlichiosis

Ehrlichiosis is a general term used to describe several bacterial diseases that affect humans and animals. Members of the Ehrlichia genus are Gram-negative, rod shaped bacteria that live inside white blood cells. The lone star tick is the primary vector of this disease, although the Ixodes tick is also a known vehicle of transmission. For this reason, people with Lyme disease may also be co-infected with ehrlichiosis.

Ehrlichia chaffeensis and Ehrlichia ewingii are the two most commonly implicated species in human disease. Symptoms of the infection take between one to two weeks to appear and include fever, headaches, chills, malaise, vomiting, nausea, diarrhea, confusion, muscle pain, and red eyes. The absence of a rash can help to distinguish ehrlichiosis clinically from Lyme disease and Rocky Mountain Spotted Fever.

Ehrlichia is diagnosed based on a combination of clinical signs, symptoms, and confirmatory lab test. Antibiotics are the treatment of choice.

Rickettsia Rickettsii (Rocky Mountain Spotted Fever)

Rickettsia rickettsii is the causative agent of Rocky Mountain Spotted Fever (RMSF). The bacteria are Gram-negative, rod shaped intracellular parasites that infect endothelial cells. The pathogen is most commonly spread by the American dog tick, brown dog tick, Rocky Mountain wood tick, and the Lyme disease transmitting Ixodes tick.

Symptoms include fever, rash, headache, nausea, sharp abdominal pain, muscle pain, lack of appetite, and red eyes. A hallmark sign of RMSF is a spotted rash that occurs in 90 percent of patients about two to five days after the onset of fever. It is worth noting that 10 percent of patients may not develop a rash at all. RMSF is a very serious illness that can be fatal within eight days of symptomatic disease if improperly diagnosed. A sign of advanced infection is a red to purple spotted rash that appears around the sixth day of illness in 30-65 percent of patients; for the best outcome, treatment should commence before the appearance of this symptom.

RMSF may lead to the inflammation of blood vessels (vasculitis) because Rickettsia rickettsii infects the endothelial cells that make up their lining. This can trigger bleeding and clotting in vital organs, and fluid leakage in extremities that can lead to amputation.

RMSF is diagnosed symptomatically and confirmed with laboratory tests. Common tests include detection of bacterial DNA through polymerase chain reaction (PCR) and detection of antibodies through the immunofluorescence assay (IFA). Treatment involves the administration of antibiotics and should be provided even if lab results are pending or negative.

Southern Tick-Associated Rash Illness (STARI)

Southern tick-associated rash illness (STARI) is carried by the lone star tick and was not recognized as separate from Lyme disease until the 1990s. However, doctors have been recording patients with this ‘Lyme-like’ disease since the 1980s. STARI is predominately found in the South Central and Southeastern United States. It was discovered by a doctor in Missouri, Edwin Masters, and is sometimes referred to as Master’s disease.

The main sign of this illness is the presence of a Lyme-like bull’s eye rash around the site of the tick bite. However, little is known about STARI, so it should not be assumed that every case will present with an obvious rash. Other symptoms of STARI include: fatigue, muscle pain, headache, stiff neck and sometimes fever. Acute symptoms appear to respond to the antibiotic doxycycline.

Tick-Borne Relapsing Fever

Tick-borne relapsing fever (TBRF) is a bacterial infection transmitted by tick bite. The tick must be infected with the Borrelia spirochete to pass on the illness. Episodes of fever, or febrile periods, last approximately three days with seven days of afebrile periods in between.

The main symptom of TBRF is recurrent episodes of fever. However, fatigue, malaise, vomiting, abdominal pain, and other non-specific symptoms have also been reported. TBRF responds to penicillin, tetracyclines, and macrolides.

Tularemia

Tularemia is caused by the Gram-negative intracellular bacterium Francisella tularensis. This disease infects both humans and animals, but is particularly devastating to rabbits, hares, and rodents. It is spread via ticks, deer flies, contact with infected animals, ingestion of contaminated water, and inhalation of infectious droplets. Tularemia is naturally occurring, but its ease of transmission through aerosol classifies it as a bioterrorism warfare agent. Symptoms of this disease vary and depend on the pathogen’s mode of entry into the body. Nevertheless, all forms of tularemia present with fever.

  • Ulceroglandular: This form of the disease is acquired through handling an infected animal or through the bite of a tick or deer fly. A skin ulcer appears at the bite site, which is accompanied by inflamed regional lymph nodes.
  • Glandular: Glandular tularemia is transmitted in the same manner as the ulcerograndular variety. It also presents with similar symptoms although the ulcer is absent in this case.
  • Oculoglandular: This variety occurs when bacteria enter through the eye. Symptoms include inflammation of the eye and swelling of the lymph node in front of the ear.
  • Oropharyngeal: This manifestation results from consuming contaminated food or water. Symptoms include sore throat, mouth ulcers, and inflammation of the tonsils and the lymph nodes in the neck.
  • Pneumotic: This is the most serious form of tularemia. It results from the inhalation of contaminated droplets or as a consequence of not treating one of the other manifestations where the bacteria spread via the blood to the lungs. Symptoms include cough, chest pain, and difficulty breathing.

Tularemia can be difficult to diagnose because its symptoms mimic other diseases. For this reason it is imperative to share with your doctor any risk factors, such as tick bites or exposure to livestock. Tularemia is confirmed with blood tests and culture, and treated with antibiotics.

Bourbon Virus

Bourbon virus (BOUV) is one of an increasing list of new tick-borne viruses. BOUV is named after a man who died of the Thogotovirus in Bourbon County, Kansas in 2014. BOUV was first identified in Bourbon County, but doctors and researchers guess that this was likely not the first case, and is probably the cause for an unknown number of other undiagnosed or misdiagnosed illnesses in the surrounding area. However, it is too soon to know exactly how prevalent BOUV is, and more information will undoubtedly be released as it becomes available.

Unlike many tick-borne infections, BOUV is a virus and will not respond to antibiotics, so the only treatment as of yet is to support the patient and attempt to relieve symptoms. Symptoms of BOUV are still being investigated, but the Kansas man who passed away suffered from nausea, headaches, muscle pain, fever, laboratory abnormalities, and eventually organ failure.

Colorado Tick Fever

Colorado Tick Fever (CTF) is a tick-borne virus of the genus Coltivirus. CTF is also known as Mountain tick fever, American tick fever, and American Mountain tick fever and was first isolated in human blood in 1944. The virus is most prevalent in March through September, with June seeming to be the month of highest risk for infection. Tick-borne diseases are often associated with the Northeastern United States, but CTF is predominately but not exclusively found in the Western United States and Canada, in very mountainous regions. It is seen most commonly in Colorado, but tick checks and precautions should be made in all states and regions. This is especially relevant to those who camp or engage in other outdoor activities.

Symptoms of CTF usually show themselves within 3 to 6 days after the tick bite, but can appear within up to 20 days. If a tick in these regions has bitten you, watch for the following symptoms: two-staged fever, chills, weakness, sweating, vomiting, nausea, photophobia, rash, muscle pain/aches, and abdominal pain. Complications are rare, but include meningitis and encephalitis. These complications are usually found in children and those with a compromised immune system.

There is no known treatment for CTF, but after fully removing the tick, acetaminophen can be helpful to reduce pain and fever.

Heartland Virus

Heartland virus (HRTV) is one of an increasing list of new tick-borne viruses. HRTV is of the genus Phlebovirus, and was discovered in northwestern Missouri in 2009. Mosquitoes and sand flies can also transmit Phleboviruses, but, at this time, HRTV appears to be specific to the Lone Star Tick.

Symptoms of HRTV include weakness, fever, muscle and joint pain, loss of appetite, nausea, diarrhea, and laboratory abnormalities. Unlike many tick-borne infections, this is a virus and therefore does not respond to antibiotics. As of now, treatment includes supporting the patient and relieving symptoms.

Powassan Virus

Powassan virus (POWV), discovered in Powassan, Ontario, has appeared in America mostly in the Great Lakes and Northeast regions. The CDC reports only 50 cases in the past decade, but it is important to note that these are only reported cases, so there is almost certainly a significant, yet unknown number of other cases that have gone undiagnosed or misdiagnosed.

POWV is of the genus Flavivirus, and symptoms include fever, weakness, vomiting, headache, seizures, confusion, swelling of the brain, and memory loss. Unlike many tick-borne infections, this is a virus and therefore does not respond to antibiotics. As of now, treatment includes supporting the patient and relieving symptoms.

Resources

Disclaimer – Any information provided is for the reader’s own evaluation and is not offered as and should not be considered medical advice. A licensed physician should always be consulted when considering medical decisions and nothing herein may be used in place of advice from your personal physician or other healthcare professional. Links to other sites are provided for ease of research only. Information on those sites is the product of the website author and represents the opinion of those who publish the sites and does not necessarily reflect the opinion or judgment of the National Capital Lyme and Tick-Borne Disease Association.

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Tick-Borne Diseases and Children

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