After 37 years treating Lyme disease, I’ve learned that one decision often makes the biggest difference in a patient’s outcome: choosing a doctor who knows how to treat chronic Lyme disease. Patients come to me after months—or even years—of fatigue, brain fog, pain, and frustration. Many have been told their tests are normal. Others were told their symptoms were “just stress” or “part of aging.” But what they often have are chronic manifestations of Lyme disease—and they’ve never been evaluated by a doctor who knows how to recognize them, making it a critical barrier to Lyme disease recovery.

What Makes Chronic Lyme So Hard to Catch?

Lyme disease is most commonly known for early signs like rash, fever, or joint pain. But when those signs are missed—or when treatment is too short—the infection can persist and evolve into something much more complex.

These chronic manifestations of Lyme disease can include:

• Fatigue that doesn’t improve with rest
• Migratory joint or muscle pain
• Brain fog or memory issues
• Numbness, tingling, or burning
• Mood changes, anxiety, or depression
• Dizziness or heart palpitations

These symptoms often overlap with conditions like fibromyalgia, chronic fatigue syndrome, autoimmune disorders, or depression—which is why so many patients are misdiagnosed or dismissed.

Not All Doctors Treat Chronic Lyme the Same Way

Standard protocols often focus only on early Lyme disease—usually a 2–4 week course of antibiotics. But when symptoms persist or relapse, a different approach is needed. A doctor who treats chronic Lyme knows how to:

• Make a clinical diagnosis, even when labs are negative
• Recognize common co-infections like Babesia or Bartonella
• Tailor antibiotic or anti-parasitic treatment over time
• Support neurologic, cardiac, and autonomic symptoms holistically

This kind of care is based on experience—not just textbooks.

What About PTLDS? Don’t Overlook a Persistent Infection

Some patients are diagnosed with Post-Treatment Lyme Disease Syndrome (PTLDS)—a term used when symptoms continue after completing standard treatment. But in my experience, many of these patients are still battling an active, persistent tick-borne infection that hasn’t been fully recognized or treated.

PTLDS does not rule out the possibility of:

• Ongoing Borrelia infection
• Untreated co-infections like Babesia or Bartonella
• Antibiotic-resistant or biofilm-protected forms of the disease

Instead of assuming the illness is “post-treatment,” a doctor who treats chronic Lyme will re-evaluate, re-test, and consider further treatment when symptoms persist.

Diagnoses That Mimic Lyme—And How to Tell the Difference

Because Lyme disease affects multiple systems, it’s often confused with:

• Fibromyalgia
• Chronic fatigue syndrome (ME/CFS)
• Multiple sclerosis (MS)
• Rheumatoid arthritis or lupus
• Anxiety, depression, or panic disorder
• POTS and other autonomic dysfunctions

The difference? Chronic Lyme symptoms tend to migrate, fluctuate, and overlap across systems. If you’re experiencing fatigue and nerve pain and cognitive issues—with a history of tick exposure—a tick-borne infection should stay on the diagnostic radar.

An experienced Lyme doctor won’t just rule out other conditions—they’ll connect the dots others may have missed.

When Tick Bite Symptoms Don’t Go Away

It’s common to hear:

“I was bitten by ticks for years—but never got a rash.”

“I took antibiotics once, but my symptoms came back.”

“My doctor said it couldn’t be Lyme because my test was negative.”

If this sounds familiar, you’re not alone. Many of my patients have similar stories—until they’re finally treated by someone who understands chronic manifestations of Lyme disease.

What to Look for in a Doctor Who Treats Chronic Lyme

Ask yourself:

• Does this doctor treat patients with persistent symptoms?
• Are they familiar with co-infections and neurologic Lyme?
• Do they treat beyond the 30-day antibiotic rule when warranted?
• Are they willing to listen, investigate, and individualize care?

If not, it may be time to find someone who will.

How to Start Finding a Doctor With Experience in Chronic Lyme

If your primary care doctor or specialist says there’s nothing more they can do—or insists your symptoms don’t “fit”—you’re not alone.

Here’s how to begin your search for someone who is equipped to help:

1. Look for Experience, Not Just Titles

There’s no official “Lyme specialist” certification. What matters is clinical experience. Look for doctors who:

• Treat chronic Lyme and tick-borne infections regularly
• Understand Babesia, Bartonella, and other co-infections
• Use clinical judgment—not just test results
• Offer treatment beyond a rigid 30-day antibiotic course

Ask the clinician:

• “Do you take a clinical approach even if tests are negative?”
• “Are you open to retesting or retreating if symptoms persist?”
• “Do you screen for and treat co-infections like Babesia, Bartonella, or Anaplasma?”
• “How do you handle cases of Post-Treatment Lyme Disease Syndrome (PTLDS)?”
• “Are you willing to individualize treatment based on symptom progression, not just timelines?”
• “Do you have experience treating neurologic or psychiatric symptoms in Lyme disease, including PANS and POTS?”

2. Use Trusted Referral Resources

Start with these reputable organizations:

• Lymedisease.org – Find a Lyme-Literate Doctor
  A patient-centered advocacy network with provider listings.
• Global Lyme Alliance – Physician Referrals
  Connects patients with experienced clinicians through a referral request.
• ILADS – International Lyme and Associated Diseases Society
  Provides a provider referral tool and educational resources.
• LivLyme Foundation – Resources and Referrals
  Especially helpful for families and pediatric Lyme cases.
• Local Lyme support groups
  Online communities and in-person groups often maintain informal lists of trusted doctors.

You Deserve a Doctor Who Will Keep Looking

Too many patients are told to accept their symptoms as normal aging, anxiety, or something they “just have to live with.”

But I’ve seen firsthand: When patients finally find a doctor who treats chronic Lyme, everything changes.

You deserve a real evaluation. A real diagnosis. And a real shot at recovery.

Clinical Takeaway

After 37 years treating Lyme disease, I’ve learned that finding a doctor who treats chronic Lyme can change everything. Standard protocols focus only on early Lyme with 2–4 week antibiotics, but when symptoms persist or relapse, a different approach is needed. A doctor who treats chronic Lyme knows how to make clinical diagnoses even when labs are negative, recognize co-infections like Babesia or Bartonella, tailor treatment over time, and support neurologic, cardiac, and autonomic symptoms holistically. Look for doctors with clinical experience treating persistent symptoms, who use clinical judgment beyond test results, and who individualize treatment based on symptom progression.

Frequently Asked Questions

How do I find a doctor who treats chronic Lyme disease?
Start with trusted referral resources like Lymedisease.org, Global Lyme Alliance, ILADS, LivLyme Foundation, and local support groups. Look for doctors with clinical experience treating chronic Lyme and co-infections.

What should I ask a doctor who treats chronic Lyme?
Ask if they take a clinical approach despite negative tests, screen for co-infections like Babesia and Bartonella, handle PTLDS cases, individualize treatment beyond rigid timelines, and treat neurologic or psychiatric symptoms.

Why is chronic Lyme so hard to diagnose?
Chronic Lyme symptoms overlap with fibromyalgia, chronic fatigue syndrome, autoimmune disorders, MS, anxiety, depression, and POTS. Standard labs are often negative, and symptoms migrate and fluctuate across multiple systems.

What’s the difference between PTLDS and persistent Lyme infection?
PTLDS describes symptoms continuing after standard treatment. However, many patients are still battling active persistent tick-borne infection, untreated co-infections, or antibiotic-resistant forms that need re-evaluation.

Can chronic Lyme be treated successfully?
Yes. When patients find a doctor who treats chronic Lyme with experience recognizing persistent infections and co-infections, who tailors treatment over time, and who supports neurologic and autonomic symptoms, outcomes improve significantly.

Related Reading

Lyme Disease Recovery: What Patients Need to Know
Persistent Lyme Disease Symptoms: When Recovery Takes Longer
Medical Dismissal in Lyme Disease
Breaking the Groundhog Day Cycle in Chronic Illness
What Is Post-Treatment Lyme Disease Syndrome?

References

1. Dr. Daniel Cameron: Lyme Science Blog. Fatigue Can Be an Overlooked Sign of Lyme Disease
2. Dr. Daniel Cameron: Lyme Science Blog. Babesia and Lyme — it’s worse than you think
3. Dr. Daniel Cameron: Lyme Science Blog. Signs and Symptoms of Untreated Lyme Disease