Plan B · Learnreading the test
Your Lyme tests disagree. Here is how to read that.
A specialty panel came back positive for Lyme, Bartonella and Babesia. A year later, standard testing says negative for everything. Was the first one wrong — and if there is no Lyme, what is your child sick with?
A negative standard test does not mean "never infected"
Two honest reasons the second test can be negative:
- Standard two-tier testing misses a great deal of tick-borne disease. It is specific but not sensitive — chronic and already-treated infections slip through it routinely. A negative there has never meant "not infected."
- Antibodies fall after treatment. A year under treatment is exactly when levels come down. A negative now can mean the treatment worked and the immune response wound down — not that the original result was false.
The gap between specialty panels and standard serology is a real, unresolved controversy in this field — different methods, different sensitivity. A disagreement does not prove the first test was wrong.
The bigger reframe
It may matter less which bug it was than what the immune system did about it. A positive ANA, a sudden neuropsychiatric collapse — that is an immune storm. Whether the trigger was Lyme, Bartonella, Mycoplasma, a virus, or (most often) the combination, the illness is the neuroinflammatory response the infections set off.
Children improve because treatment calms that response — which is why improvement can be real even when the labs look confusing.
When a child is "better but still exhausted"
The usual suspects worth chasing:
- Mycoplasma — persistent, intracellular, and treatable
- Babesia — the classic hidden cause of deep fatigue and air hunger, frequently missed by standard labs, and it needs its own anti-malarial treatment
- Post-viral load — EBV, HHV-6, parvovirus, COVID can all leave a long fatigue tail
- The engine underneath — mitochondria, ferritin and iron, thyroid, methylation, adrenal/HPA
What to do with the disagreement
- Trust the trajectory and the symptoms over the lab noise. Labs are an imperfect snapshot; your child is the truer data.
- Ask the treating doctor directly to reconcile the two labs — "help me understand why these do not match" is a fair and useful question.
- Ask them to zero in on the remaining symptom — is the fatigue Babesia, post-viral, immune, or engine?
Want this answered for your own child? A Plan B synthesis reads every lab and note you have — together — and tells you what is driving the picture, what has never been checked, and what to ask for next.
The first one is free, and you keep the list either way. Phone photos of labs are fine.
Plan B for PANS is written by a parent, not a physician. Nothing here is medical advice or a substitute for your child's clinicians — it is meant to make you the best-informed person in the room when you talk to them.