Tickborne Illness (lyme and bartonella) and PANS

Why Is There So Much Controversy Around Lyme & Bartonella Testing in PANS/PANDAS?

This is confusing because there are really two different conversations happening at once:

1. Whether infections like Lyme or Bartonella can trigger neuropsychiatric symptoms.

2. Whether our current lab tests can reliably prove that in a specific child.

Those are not the same question.

Can infections trigger neuropsychiatric symptoms?

Yes — infections can absolutely trigger immune-mediated neuropsychiatric symptoms.

PANS itself is defined as sudden-onset OCD, anxiety, tics, or regression triggered by an immune response. Strep is the classic example (PANDAS), but other infections — including Mycoplasma, influenza, COVID, and possibly tick-borne infections — may also act as triggers in some patients.

Where people disagree is:

• How common tick-borne infections are as triggers

• Whether persistent symptoms represent ongoing infection vs immune aftermath

  
  

The real controversy: the lab testing

This is where it gets complicated.

A. Standard CDC-tier Lyme testing

The conventional two-tier test (ELISA + Western blot):

• Was designed to detect late-stage, systemic Lyme disease

• Is less sensitive in early or chronic disease

• May miss some cases

Mainstream infectious disease doctors trust this testing.

Lyme-literate practitioners argue it misses too many cases, especially:

• Early disease

• Neuropsychiatric presentations

• Chronic or partially treated infections

  
  

B. Specialty labs (IGeneX, Galaxy, Vibrant, etc.)

These labs:

• Use expanded Western blot bands

• Offer PCR, antigen detection, or enriched culture methods

• Often report more positives

The controversy:

Supporters say:

• Standard testing is too restrictive

• These labs detect infections that conventional testing misses

• Clinical response to treatment supports their validity

Critics say:

• Some assays lack strong validation in large, blinded studies

• Specificity may be lower (meaning false positives can happen)

• Positive results don’t always mean active infection

In other words:

Some experts worry these tests may overdiagnose chronic tick-borne infection.

Bartonella testing is especially tricky

Bartonella is hard to detect because:

• It lives inside cells

• It can be intermittently present in blood

• Antibody levels may fluctuate

• PCR sensitivity is limited

Even mainstream infectious disease literature acknowledges that Bartonella testing has limited sensitivity.

So:

• A negative test does not rule it out

• A positive test does not always prove active disease

This ambiguity fuels disagreement.

Why this matters for PANS

In PANS, symptoms may be driven by:

• Active infection

• Post-infectious immune activation

• Autoantibodies

• Microglial activation

• Mast cell / inflammatory cascades

A positive Lyme or Bartonella test does not automatically tell us:

• Is this actively driving symptoms?

• Is it incidental?

• Is this immune aftermath instead?

That uncertainty makes treatment decisions more controversial.

Why doctors disagree so strongly

This is partly philosophical:

Infectious disease specialists tend to say:

• If testing is unreliable, we shouldn’t treat long-term with antibiotics.

• There’s risk in overdiagnosing chronic infection.

Lyme-focused clinicians say:

• Testing is imperfect, so we rely on clinical patterns.

• Some children improve dramatically with treatment.

• Waiting for perfect evidence harms patients.

Both sides are trying to prevent harm — they just weigh risks differently.

What I tell families

I usually explain it this way:

• The immune-brain connection is real.

• Tick-borne infections can act as immune triggers in some patients.

• Our testing tools are imperfect.

• A lab result should never be interpreted in isolation.

• The clinical picture matters most.

Treatment decisions should center 

• THE PATIENT: If not doing well, we push further, if doing well, we dont.

• Everything is in weighing the risk/benefit

  
  

The honest bottom line

There is:

• Strong agreement that infections can trigger neuroinflammation.

• Weak agreement on how best to test for tick-borne infections in neuropsychiatric presentations.

• Ongoing research, but no perfect diagnostic tool yet.

Medicine is still catching up to the complexity of immune-mediated brain disorders.

For each individual patient, we need to weigh the history, balance of the evidence, the risk/benefits, and decide on a case by case basis how to approach this testing and treatment