New to chronic Lyme?
If you were treated for Lyme and are still sick, or doctors can't explain your symptoms, start here. These are the most common questions and where to go next.
Just bitten by a tick? Most of this page is about chronic illness. For a recent bite, see a doctor promptly, and read our tick testing guide to save and test the tick.
Three first steps
Learn the basics
Read an accessible book like Unlocking Lyme so you can advocate for yourself.
Recommended books →Find a Lyme-literate doctor
LLMDs test for co-infections and use combination protocols. ILADS keeps a directory.
ILADS provider search →Explore the options
Compare antibiotic and herbal protocols so you understand what your doctor suggests.
Browse protocols →Frequently asked questions
Adapted and expanded from the r/Lyme community FAQ.
Who is this site for?
Curing Lyme is mainly for people who were treated for Lyme disease but are still sick, or who have Lyme-like symptoms that conventional medicine hasn't explained. That includes people with suspicious Western blot bands but a "negative" CDC result, and people diagnosed with conditions like fibromyalgia or ME/CFS who live in tick country.
Just bitten? This site is not the right starting point. See a doctor promptly and read our Tick Testing guide. Rule out other causes before exploring alternative treatments.
What is chronic Lyme disease?
The CDC uses the term Post-Treatment Lyme Disease Syndrome (PTLDS) for symptoms that continue after the standard 2–4 week antibiotic course. Lyme-literate doctors (LLMDs) usually say chronic Lyme disease, reflecting their view that the infection itself can persist.
Animal studies in mice and monkeys have found intact spirochetes after aggressive treatment, and ILADS maintains a list of hundreds of peer-reviewed papers on persistence. Ticks can also transmit co-infections such as Babesia and Bartonella, which standard Lyme antibiotics may not treat.
Dr. Richard Horowitz describes chronic Lyme with his MSIDS model: multiple infections plus factors like toxins, mold and immune problems that together create a unique illness in each person.
I'm still sick after treatment. What should I do first?
- Learn the basics. Many doctors have limited Lyme training, so understanding the illness yourself helps you avoid dead ends. Start with Unlocking Lyme by Dr. Bill Rawls (see Resources).
- Find a Lyme-literate doctor (LLMD) if your current doctor has nothing more to offer. ILADS has a provider search.
- Get tested for co-infections with a specialty lab.
- Consider functional medicine doctors or naturopaths, who often use herbal protocols and take a whole-body approach.
How do I recognise a good LLMD — and avoid scams?
Good signs: a long first appointment (often 2–4 hours) with a detailed history, testing for co-infections, use of specialty labs, a clear explanation of why each treatment is chosen, guidance on Herxheimer reactions and detox, and regular lab monitoring.
Red flags: promises of guaranteed or fast cures, pressure to buy large amounts of proprietary products, and supplements that aren't typically used for Lyme.
LLMDs often don't take insurance and initial visits can cost far more than a standard specialist — that reflects longer visits, not necessarily overcharging. Trust your instincts: if something feels off, move on.
I can't afford an LLMD. What else can I do?
- Work with an open-minded insurance-based doctor. Dr. Marty Ross publishes detailed, free protocols at treatlyme.com that you can bring to your appointment. Many of the protocols on this site come from his guides.
- Insist on lab monitoring. Multi-antibiotic regimens should include regular liver tests (about monthly). With rifampin and related drugs, many LLMDs check liver enzymes on day 2, day 7, day 14 and then monthly.
- Consider herbal protocols. The Buhner protocol is one of the most affordable options, and many people make their own tinctures.
Why is there so much conflicting information?
Lyme is highly politicized. There's no reliable test for active infection, mainstream guidelines (IDSA) and Lyme-literate guidelines (ILADS) disagree on persistent illness, and large controlled trials of the combination and persister-focused regimens LLMDs actually use have not been done.
Our Research section includes studies from both sides so you can judge for yourself.
Can Lyme become resistant to antibiotics?
Borrelia has not been shown to develop true genetic resistance. But it has other survival strategies:
- Round bodies (cysts) — dormant forms that don't replicate, so drugs like doxycycline that act on dividing bacteria can't kill them.
- Persisters — dormant cells that tolerate antibiotics and can regrow later. This is why many protocols add a "persister" agent.
- Biofilms — protective slime communities that shield bacteria from drugs and immune cells. Common biofilm agents include serrapeptase, lumbrokinase, NAC and Cistus tea. See Biofilm Busting Add-Ons.
How long does it take to get better?
There's no fixed timeline. It depends on how long you've been ill, which co-infections you have, your immune and detox capacity, and other exposures such as mold or heavy metals. Dr. Ross estimates about two years on average for chronic Lyme, with wide variation.
Recovery is rarely a straight line — expect good and bad stretches. Two common pitfalls:
- Quitting too early. Many people feel worse for the first 1–2 months.
- Staying too long on something that isn't working. After 6–8 months without improvement, something is likely missing (a co-infection, or a protocol that isn't strong enough).
I feel worse on antibiotics or herbs. Is it working?
Possibly. A Jarisch-Herxheimer reaction ("herx") is a temporary flare of symptoms — joint pain, fatigue, brain fog, chills, headaches — as bacteria die off and release debris. It usually starts within days of beginning or changing treatment.
A herx should be manageable. If it's disabling, pause or lower the dose for a few days so your detox pathways can catch up, then resume. Not everyone herxes, and the absence of one doesn't mean treatment is failing.
Important: rash, hives, swelling or trouble breathing are signs of a drug reaction, not a herx — get medical help.
Doxycycline upsets my stomach. What can I do?
- Take it with food — it's much easier on the stomach.
- Keep dairy, calcium, iron and magnesium at least 2 hours away, as they reduce absorption. If you accidentally took it with dairy, don't double up — it still works.
- Protect your gut: take Saccharomyces boulardii (a yeast probiotic antibiotics can't kill), bacterial probiotics 2+ hours away from your dose, and fermented foods like sauerkraut or kefir.
- Stay upright for 30 minutes after a dose and drink a full glass of water.
Does diet matter?
Yes. Your body is working hard to clear infection and die-off, so a whole-food, anti-inflammatory diet helps. A Mediterranean-style diet — fresh vegetables, fish, quality meats, legumes, olive oil — is a good template.
Many people feel better reducing gluten, dairy, processed sugar and alcohol, and keeping caffeine moderate. That said, mental wellbeing matters too: an occasional treat is fine. Think 90% nourishing, 10% enjoyment.
Should I retest after treatment?
Usually not. Most Lyme tests measure antibodies, which can remain for years after the infection is gone, so they can't tell you whether you're cured. Watching bands disappear on a Western blot is speculative at best.
Your symptoms are the best guide. Returning to normal life without ongoing treatment suggests remission. Lyme can reactivate under stress, illness or immune suppression, so keep supporting your health afterwards.
How reliable is Lyme testing?
Standard two-tier CDC testing misses many cases, especially later in the illness. Specialty labs such as IGeneX (which uses recombinant proteins and tests for multiple Borrelia species), Vibrant, Galaxy Diagnostics (Bartonella) and Armin Labs offer more sensitive panels; see Resources.
If you have positive Lyme-specific bands and matching symptoms, a "negative" result doesn't rule Lyme out. Dr. Ross publishes a Lyme testing scorecard comparing tests.
Are herbs and supplements safe? They seem poorly regulated.
It's true supplements aren't regulated like drugs, so quality varies. The answer is to be selective: choose brands with third-party testing, transparent sourcing and good reputations. The r/Lyme wiki keeps a list of vetted herbal suppliers.
Herbs can still interact with medications (for example Samento and Banderol affect liver enzymes), so tell your doctor what you take.
What about alternative treatments like Rife, ozone or bee venom?
Many people in the Lyme community report benefit from therapies such as Rife, ozone and bee venom, though rigorous trials are lacking. A sensible approach is a risk-benefit analysis: consider them after conventional options have been tried and other diagnoses ruled out, research each one, and work with a practitioner you trust.
How should I use online forums like r/Lyme?
Forums are great for support and real-world experience, but they aren't a doctor's office. Don't expect diagnoses, and research any treatment you hear about before trying it. When you post, include test results (with specific bands), tick exposure, rashes, doctors seen and what's been ruled out.
The r/Lyme community FAQ is an excellent, more detailed read.
Source and further reading: r/Lyme community FAQ. Community content reflects patient experience, not medical advice.