For Providers

Diagnosing Tick-Borne Disease?

There are over 20 tick-borne diseases or conditions currently known to occur throughout the US and that may Colorado residents and/or their pets. Seven diseases are currently required physician/laboratory reportable diseases in Colorado. Zoonotic disease reports in Colorado from 2012-2017 here. However, not all of the nationally notifiable tick-borne diseases are tracked or reported by the Colorado State Department of Health & Environment (CDPHE), leaving incidence of infection for many diseases unknown in Colorado. Surveillance of ticks and tick-borne diseases is also lacking in the state of Colorado. Only one limited passive surveillance survey has been conducted by the CDPHE to date. Results from this study for the most commonly encountered ticks in Colorado are displayed here. Data that was collected regarding lesser encountered tick species, some with both veterinary and medical significance, are not displayed. Ticks conventionally regarded as “non-human biters” were not identified by species in the CDPHE data set, though recent research indicates that some of these species may pose a bigger risk to human health then previously considered. There is much unknown about the occurrence of ticks species and their pathogens in Colorado.

The sooner a tick-borne disease is properly diagnosed and treated, the better!

Though not all infections manifest into serious illness, lack of timely, accurate, diagnosis and treatment may result in adverse outcomes for patients of tick-borne disease including extended treatment, hospitalization, disability or death.

ID Doctors at Walter Reed Medical Center in Bethesda, MD state in this new study… “The availability of laboratory testing for tick-borne diseases is limited, especially in the acute setting. Therefore, if a tick-borne disease is suspected, empiric therapy should often be initiated before laboratory confirmation of the disease is available.”

Tick-borne illnesses and conditions may manifest in vague, classic or dramatic and unusual presentations. Many of the tick-borne infections can initially present as a flu-like syndrome that are often misdiagnosed as viral other illnesses. Initial disease symptoms may not appear for days, weeks or even months after exposure to the infection.

Initial symptoms common to many tick-borne diseases are often flu-like and may include:

  • Fever (may be high and/or relapsing in nature)
  • Chills
  • Sweats
  • Rashes (multiple presentations or no rash)
  • Headache
  • Stiff neck
  • Muscle-aches
  • Fatigue
  • Nausea/vomiting

Additionally, individuals and their pets returning to Colorado from travel out of state or country may not be aware of their tick exposure or risk of diseases in other regions of the US or World. Colorado medical care providers are then faced with diagnosing diseases they may not have any previous experience with. It is important to consider tick-borne infections if your patient becomes ill after an exposure to ticks or their habitat. For instance, a flu-like illness following a camping trip even if the patient did not notice a tick-bite!

As previous research has demonstrated, self-reported symptoms can be reliable predictors of health outcomes. Three studies evaluated The Horowitz Multiple Systemic Infectious Disease Syndrome (MSIDS) Questionnaire, a screening questionnaire that is both useful for providers and patients in diagnosing Lyme disease.

Children and Tick-borne Disease

Children are at risk of tick exposures both within Colorado and when traveling out of state. Children can be exposed through play, sports, camps, school field trips, contact with pets and family activities. Some diseases, including Lyme, Bartonella, Babesia, Tick-Borne Relapsing Fever, and others may be transmitted congenitally. Ticks that transmit Lyme and increasing numbers of co-infections are as tiny as a poppy seed and may be easily missed.

Encouraging patients to practice prevention and conduct ticks checks is a critical part of preventative health care.

According to the CDC, the highest infection rates of Lyme disease occur in children, ages 5 to 15. Of the over 300,000 people infected in the U.S. each year, one in four is a child.

Lyme Disease may Present Differently in Children. Children may present with unique symptoms.  ADHD, learning problems, social difficulties, emotional lability, eating disorders, self-harming behavior, depression, and more. In some pediatric patients, neurological or psychiatric symptoms may be the only sign of a Lyme infection.

Patient Testing

Per the CDC, diagnosis of Lyme and many other tick-borne diseases must be made clinically. Testing for tick-borne diseases is variable in both availability and reliability depending on the infection and the timing of testing. Often patients may require treatment before laboratory tests can return a confirmation of disease. For some diseases, commercial tests are not yet available or diagnosis may depend on the experience of the pathologist reviewing a blood slide or tissue sample under a microscope. For others, antibodies may never develop to levels able to be detected by current testing methods.

Though tick testing is also not 100% reliable and can not confirm if the tick has or has not transmitted a disease, information regarding tick species identification and the pathogens they may be carrying can aid in potential treatment decisions for your patient.

There are many laboratories specialized in testing of tick-borne diseases may be more sensitive in detecting the presence of pathogens than standard laboratories.

For many tick-borne diseases a negative test does not mean no infection! Therefore, recognition of many diseases through clinical diagnosis is critical in the process of administering timely, effective and sometimes life-saving treatment to patients.

Dr. Daniel Cameron, lead author for the 2014 ILADS peer reviewed guidelines (the only guidelines currently published by the National Guidelines Clearinghouse in the treatment of Lyme disease), also provides guidance in test choice in regard to Lyme disease.

The CDC provides the Tick-borne Diseases of the United States: A Reference Manual for Health Care Providers to aid in diagnosis, testing and treatment of tick-borne diseases.

Is it Lyme Disease?

The rate of infections with B. burgdorferi and other tick-borne pathogens are increasing and researchers are discovering new, previously unknown species that cause Lyme disease symptoms. 

Lyme is the most prevalent vector-borne disease in the US and ranks 5th of all reported infectious diseases in the US behind, Chlamydia, Gonorrhea, Salmonella, and HIV/Aids (new cases). The CDC estimates that Lyme is under reported by 10 times. Case numbers have increased to nearly 400,000 in 2015. Lyme and many other TBD’s are most often a clinical diagnosis due to the lack of reliable laboratory testing.

The controversy and confusion about Lyme diagnosis and treatment leaves many Coloradans undiagnosed, undertreated, and vulnerable to long-term, preventable, health problems from Lyme and tick-borne infections.

Two standards of care:

ILADS (International Lyme and Associated Diseases Society) Guidelines, 2014

IDSA (Infectious Diseases Society of America) Guidelines, 2006 (IDSA is currently in the process of reviewing/updating the outdated guidelines)

The main difference between the guidelines of the IDSA and those of ILADS is that in the face of scientific uncertainty, the ILADS guidelines defer to clinical judgment and patient preferences while those of the IDSA make very strong recommendations against treatment and severely restrict the use of clinical judgment.

ILADS offers an annotated appendix with comparisons of the IDSA and ILADS guidelines.

Lyme disease may not have a traditional presentation. In December 2013 the CDC published a report on three sudden deaths caused by Lyme Carditis. Patient 3 “complained of episodic shortness of breath and anxiety during the 7–10 days before death. No rash, arthralgia, or neurologic symptoms were noted. A physician consulted 1 day before death prescribed clonazepam for anxiety.” Patient 1 “described a nonspecific illness with malaise and muscle and joint pain during the 2 weeks before death.”

Lyme Infections can have Psychiatric Symptoms. Columbia University Medical Center notes that, while most psychiatric disorders have nothing to do with Lyme disease, neuropsychiatric symptoms can “emerge either early or late in the disseminated phase of infection”. These symptoms include “cognitive symptoms, irritability, easy tearfulness, anxiety, and depression….Sleep disturbances are also common in Lyme disease.”

Co-infections may require different treatment. Co-infections such as Bartonella and Babesia can exacerbate the symptoms of a Lyme infection. Some co-infections require different treatment than a Bb infection. When a patient does not respond to treatment for Lyme disease, or their symptoms reappear after treatment, they may have a co-infection.

As previous research has demonstrated, self-reported symptoms can be reliable predictors of health outcomes. Three studies evaluated The Horowitz Multiple Systemic Infectious Disease Syndrome (MSIDS) Questionnaire, a screening questionnaire that is both useful for providers and patients in diagnosing Lyme disease.

Dr. Robert Branfield et al. developed A Clinical Diagnostic System for Late-Stage Neuropsychiatric Lyme Borreliosis Based upon an Analysis of 100 Patients

Lyme disease remains a clinical diagnosis as per the CDC. Lyme disease is spreading worldwide, with multiple Borrelia species causing a broad range of clinical symptoms that mimic other illnesses. Lyme disease in its early stage can often be effectively treated, but persistent infection, complex pathology affecting multiple body systems and organs, biofilm and cyst formation, and associated tick-borne co-infections make Chronic Lyme/Post Treatment Lyme Disease Syndrome (PTLDS) difficult to diagnose and complex to treat.

Colorado needs more physicians trained in the diagnosis and treatment of Lyme and other tick-borne diseases. Currently, many Coloradans already sick from neurological or untreated infections must drive hours or even travel out of state to receive access to evaluation, diagnosis and effective treatment.  

A variety of CME opportunities are available for Physicians and other medical care providers to gain experience and training in the diagnosis and treatment of Lyme and other tick-Borne Disease. Visit the link to Physician Training. 

Breakthroughs in treatment research. Lyme disease continues to be the most prevalent tick-borne disease in the United States and one of the most difficult to treat for a growing number of patients. Researchers across the country are focusing on new treatments for effective eradication of the demonstrated persistent Lyme bacteria.

Dr. Ying Zhang, Johns Hopkins Bloomburg School of Public Health: Selective Essential Oils from Spice or Culinary Herbs Have High Activity against Stationary Phase and Biofilm Borrelia burgdorferi

Dr. Eva Sapi, New Haven University: Effectiveness of Stevia rebaudiana whole leaf extract against the various morphological forms of Borrelia burgdorferi in vitro.

Dr. Richard Horowitz: Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1

Dr. Kenneth Liegner: Disulfiram (Tetraethylthiuram Disulfide) in the Treatment of Lyme Disease and Babesiosis: Report of Experience in Three Cases.

Dr. Brian Fallon from Columbia University is currently conducting clinical trials with Disulfiram.

For more information on the diagnosis and treatment for Lyme and other Tick-Borne Diseases please visit the Lyme and Other TBD’s pages and Physician Resources.