Welcome to r/Lyme! This post is a general overview of Lyme disease and guidelines for people who have just been bitten by a tick.
Disclaimer: This is for educational purposes only and is not intended to be medical advice. Please seek the help of a medical professional if necessary.
What is Lyme Disease?
Lyme disease is the most common vector-borne illness in the U.S., caused by Borrelia burgdorferi and Borrelia mayonii. It’s usually transmitted by blacklegged ticks (also known as deer ticks).
Early symptoms include:
- Fever
- Headache
- Fatigue
- Erythema migrans (bullseye rash) – note: up to 60% of people never develop a rash
If untreated, the infection can spread to the heart, joints, and nervous system, potentially leading to chronic illness and long-term complications.
What to Do If You Were Just Bitten
1. Test the Tick (if you still have it)
Send it to: https://www.tickcheck.com/
This identifies which infections the tick carried and can guide treatment decisions. If you no longer have the tick, just move on to the next steps.
2. Check for a Bullseye Rash
If you're unsure what it looks like, see this guide:
https://www.reddit.com/r/lyme/wiki/diagnostics/identify/
Important: If you have a bullseye rash, you have Lyme disease. No further testing is needed. Start treatment.
3. Review the ILADS Treatment Guidelines
https://www.ilads.org/patient-care/ilads-treatment-guidelines/
Summary of ILADS recommendations:
- If bitten but asymptomatic: 20 days of doxycycline is recommended (assuming no contraindications)
- If rash or symptoms are present: 4–6 weeks of doxycycline, amoxicillin, or cefuroxime is recommended
Why ILADS and Not CDC/IDSA Guidelines?
This is one of the most important parts of understanding Lyme treatment. The CDC and IDSA guidelines are still followed by the majority of U.S. physicians, but they are deeply flawed and outdated in several key ways.
Here’s why ILADS guidelines are preferred by most Lyme-literate doctors and patients:
1. They rely on incomplete or irrelevant data
The CDC/IDSA recommendations are based heavily on European studies, even though the strains of Lyme in Europe (B. afzelii, B. garinii) are different from those in the U.S. (B. burgdorferi). This matters because treatment responses can vary between strains.
Of the studies referenced in CDC guidelines:
- Only 6 U.S. trials were used to form the treatment tables
- Many tables relied exclusively on European data
- Duration recommendations were based on trials with high failure or dropout rates
For example:
- One U.S. study had a 49% dropout rate (Wormser et al.)
- Another had a 36% failure rate, with many needing retreatment
Yet these studies are used to support recommendations of just 10–14 days of antibiotics.
2. They ignore patient-centered outcomes
The CDC guidelines focus primarily on eliminating the rash (erythema migrans), not on whether the patient actually recovers or regains quality of life.
The ILADS guidelines, on the other hand, emphasize:
- Return to pre-Lyme health status
- Prevention of long-term symptoms
- Patient quality of life
- Lower rates of relapse and re-infection
CDC-based treatment often leaves people partially treated and still symptomatic, leading to chronic illness.
3. Their recommended durations are too short
The CDC recommends:
- 10 days of doxycycline
- 14 days of amoxicillin or cefuroxime
These durations are often not enough, especially if the bacteria have already spread beyond the skin. ILADS argues—and research supports—that longer treatment courses are more effective at fully clearing the infection, especially in the early stages when treatment is most critical.
4. High failure rates in real-world outcomes
Studies show that even patients treated under CDC protocols continue to experience symptoms months later. For instance:
A 2013 observational study found that 33% of EM patients still had symptoms 6 months after a standard 21-day course of doxycycline:
https://link.springer.com/article/10.1007/s11136-012-0126-6
Conclusion: ILADS guidelines are based on more recent evidence, use better clinical metrics (like symptom resolution), and are tailored to reflect the real-world experiences of Lyme patients in the U.S.
For a detailed breakdown and sources:
https://www.mdpi.com/2079-6382/10/7/754#B15-antibiotics-10-00754
Recommended Treatment Durations
- Mild cases (e.g. one EM rash): Minimum 20 days of doxycycline, amoxicillin, or cefuroxime
- More severe cases (multiple rashes, neuro symptoms): 4–6 weeks of antibiotics
- Still symptomatic after treatment? Re-treatment is supported by 7 of 8 U.S. trials
Getting Treatment
Many doctors are still unfamiliar with ILADS protocols and may only offer 10–21 days of antibiotics.
Here’s what you can do:
- Bring a printout of the ILADS guidelines
- Be firm but respectful—explain why longer treatment matters
- If refused, monitor your symptoms and seek further care if needed
- Be prepared to advocate for yourself—many people with Lyme had to
If you continue to have symptoms, you may need to see a Lyme-literate medical doctor (LLMD):
https://www.reddit.com/r/lyme/wiki/treatment/doctors/
Testing
Testing can be useful, but it has major limitations:
- Antibody tests are unreliable in the first 4–6 weeks
- Negative test does not rule out Lyme
- The CDC two-tiered system was developed for diagnosing Lyme arthritis, not other types of presentations like neurological or psychiatric symptoms
More info:
Best labs (not usually covered by insurance):
If you’re just starting out, a basic Lyme panel from LabCorp or Quest is a good first step—50% of true Lyme cases may still test positive and it’s cheaper than specialty labs.
The specialty tests listed above with co-infection panels are mostly recommended for people who have had symptoms for months or years without treatment and regular doctors are unable to figure out what is wrong.
More testing info:
https://www.reddit.com/r/lyme/wiki/diagnostics/testing/
Additional questions:
Don’t hesitate to make a post explaining your situation.
This community is full of people who’ve been through the same thing—and want to help.
Many of us were misdiagnosed for years.
The purpose of this sub is to prevent others from going through the same experience.
Don’t be afraid to speak up, advocate for yourself, and push for better care.
