Tick-Borne Disease Treatment
EARLY TREATMENT: Known Tick Bites
The International Lyme and Associated Diseases Society (ILADS) “recommends that known blacklegged tick bites be treated with 20 days of doxycycline...” However, the guidelines go on to recommend longer treatments of specific antibiotics based on the low success rates of 20-day or less treatment trials of EM rashes. See the ILADS Guidelines for complete details.
Lyme Disease Treatment Options – Two Sets of Guidelines
In emerging diseases, knowledge is developing rapidly and is often uncertain or conflicting. It is common in such situations to have multiple clinical guidelines available to the medical community. Indeed, in Lyme disease, there are two different sets of clinical guidelines published by professional medical societies. In Pennsylvania, your health care practitioner should inform patients of these different guidelines, with the level of evidence supporting them, to guide individualized treatment decision-making, but this rarely happens.
IDSA Guidelines:
Infectious disease doctors typically follow the Infectious Diseases Society of America (IDSA) guidelines to treat Lyme disease. IDSA guidelines generally require a positive lab test for diagnosis, and provide short-term treatment and no further treatment options for patients who remain ill. With IDSA guidelines, the emphasis on clinical judgment is limited.
ILADS Guidelines:
ILADS guidelines provide for clinical judgment and shared medical decision-making based on patient values and preferences. Diagnoses may be made clinically, with lab testing supporting the diagnosis. ILADS guidelines recommend doxycycline for 4-6 weeks or longer after a tick bite in an area known for high tick infection. The guidelines also recommend consideration of longer treatment as appropriate, especially when persistent symptoms are present. Click the buttons below to download, print and share these treatment guidelines as well as the ILADS Lyme Disease Basics for Providers with your healthcare provider.
Doctor’s Duty to Disclose
In Pennsylvania, ACT 83 directs health care professionals to provide patients with information about “the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses to enable patients to make an informed choice as part of informed consent and to respect the autonomy of that choice.”
A 2015 Task Force on Lyme Disease further recommends that Physicians provide patients a brochure that communicates - “a negative result cannot rule out Lyme disease, based on current testing (2015) in early Lyme disease. You should talk to your doctor about your exam, results of other testing, and whether another diagnosis is likely based on your doctor’s judgment.”
A Patient’s Rights
A patient’s right to informed consent and the ability to make an independent decision for themselves are part of the ethical practice of medicine. Shared decision-making is standard in other diseases. Patients are entitled to be informed of alternative thinking and options available for diagnosis and treatment, along with the level of evidence supporting them, in order to make an individualized risk / benefit decision in their care.
One-Dose Doxycycline…to Take or Not to Take?
While some health care practitioners may prescribe a single dose of doxycycline, ILADS DOES NOT recommend a single dose treatment. It is important to know that the evidence supporting this treatment is weak. Check with your health care practitioner and do your homework on the potential risks and benefits if your physician recommends single dose treatment.
GOING UNTREATED: If Lyme goes untreated, it can be harder to successfully treat at a later time. It also can spread to the nervous system and other organs including the brain stem, heart, GI tract, joints and muscles.
When making your decision about treatment, consider these factors:
• Have you had a past tick bite or tick-borne infections?
• Do you have other health conditions?
• Are the symptoms you are experiencing migratory, and/or serious?
• What are the risks of treatment versus not treating?
Treatment - What to Expect
Feeling Initially Worse
It is important to note that if your health care practitioner prescribes treatment for Lyme or a co-infection, you may initially feel worse before feeling better. This is called a Herxheimer Reaction (or a “herx” for short). The Herxheimer is a temporary worsening of symptoms that occurs when the spirochete is killed off by the antibiotics, creating inflammation.
As the body tries to eliminate (detox) the killed bacteria, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms. Share all your experiences with your health care practitioner and consult with them if you have any questions about your treatment, as it is important to distinguish between an adverse drug reaction and a Herxheimer reaction.
Feeling Initially Better, Then Worse Again
You also may feel better initially with treatment, but then get worse again in cycles. This can happen for many reasons. If you stop treatment and symptoms return, consult with your health care practitioner.
Lingering Symptoms
Persistent symptoms are a known issue after short-term treatment in a number of patients. Some practitioners may call it “Post-Treatment Lyme Disease Syndrome.” Recent evidence points to ongoing infection as a cause, but other factors must be evaluated as well
If you continue to have symptoms after treatment, seek the advice of your practitioner. Also, ask them about testing for other diseases that ticks carry. A co-infection, which may not have been addressed in your initial treatment, may be the key to lingering symptoms. Many tick-borne illnesses require treatment with different medicines.
For patients with recurring symptoms, ILADS recommends continuing treatment. ”Clinicians should retreat patients who were successfully treated initially but subsequently relapse or have evidence of disease progression… Choices must be individualized and based on several factors, including: the initial response to treatment; the time to relapse or progression; the current disease severity and the level of quality of life impairments.”
Persistent Symptoms: An Evidence-Based Definition
Persistent symptoms in patients treated for Lyme disease are a subject of much debate, and evidence continues to expand and evolve. Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group: *Multiple causes have been identified including: tissue injury, Lyme-induced secondary conditions, unrecognized or undertreated co-infections (e.g. Babesiosis, Bartonellosis, etc.), immune dysfunction of several types, and persistent Lyme infection. Immune dysfunction includes not fully clearing the infection, formation of autoantibodies, persistent activation of immune system. Experts believe that in persistent cases, likely multiple issues are at play which each need to be addressed for successful treatment.