The controversy and confusion about Lyme diagnosis and treatment leaves some Vermonters undiagnosed, undertreated, and vulnerable to long-term, preventable, health problems from Lyme and tick-borne infections. Currently, many Vermonters already sick from neurological or untreated infections must drive hours to receive effective treatment.
The National Guidelines Clearinghouse removed the IDSA Lyme Treatment Guidelines (in February, 2016) because the guidelines were out of date. Their official statement:
“It was removed from the NGC database because the guideline no longer met the NGC Inclusion Criteria pertaining to date. More specifically, the NGC inclusion criteria require that all guidelines represented in the NGC database have been developed, reviewed or revised within the last five years. All guidelines that no longer meet these criteria are removed from the NGC site on an annual basis.”
Currently, the only NGC endorsed treatment guidelines specific to Lyme disease in the U.S. are peer reviewed Evidence Assessments and Guideline Recommendations created in 2014 by ILADS.
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.”
The International Lyme and Associated Diseases Society (ILADS) offers a Physician Training Program. Their goal is to foster excellence in care for Lyme disease patients, addressing the challenges and changes in effectively diagnosing and treating tick-borne diseases. Scholarships are available.
What You Should Know
Links for Physicians
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 (present in ticks in Vermont) 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.
Lyme Disease may Present Differently in Children
Tick-borne diseases may present as 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.
“Symptoms are often vague and shifting from day to day therefore many children are thought to be malingers or emotionally disturbed”