If you’re reading this, you’re probably exhausted and out of answers. I was too. I couldn’t find a clear path through any of this when I needed it, so I spent a long time piecing one together — from doctors, research, and other mothers who’d been there. I’m leaving it here so you don’t have to start from nothing.
This is your Plan B. — Rachel
Start here
What is PANS / PANDAS?
An infection sends the immune system after the wrong target — your child’s own brain. The result is sudden, dramatic change: overnight OCD, rage, anxiety, tics, refusal to eat, a child you don’t recognize. It is not behavioral. It is inflammation in the brain — and it is treatable.
1
The trigger
An infection — strep, Mycoplasma, a virus, sometimes mold or a tick-borne bug — sets it off.
2
The misfire
The immune system, confused, attacks the brain’s basal ganglia. That neuroinflammation is the symptoms.
3
How we fix it
Calm the inflammation, find & clear the trigger, and repair the “engine” so the body clears it itself.
But it’s rarely just one thing. Deconstructing PANS means taking it apart piece by piece — the protocol first, then the tests that uncover every hidden driver. If the first line doesn’t get your child all the way better, you go deeper. Here’s the map, and the test that finds each driver.
Every child’s path is different — this is an overview of what you can do, not a fixed order. You and your team choose the sequence.
Showing the essentials — tap any card to go deeper. Flip the switch for the full clinical depth.
1
Stage 1 · Conventional
New to PANS? Here’s what to do first.
Start here. This is Dr. Swedo’s actual protocol — she described PANDAS at the NIH and co-authored the 2017 guidelines — laid out as a simple, numbered path. Don’t panic, and don’t wait: the first moves can begin today, before any lab comes back.
Six steps. Read the bold line; tap any step only when you want the doses + details.
Start two things today — calm the brain + hit the infection. Don’t wait for labs to begin.
tap for which ones + doses ›
(a) Anti-inflammatory, around the clock — high-dose fish oil (a real ~1–2 g+ EPA/DHA dose, not a gummy) plus an NSAID. Pick one with your prescriber: ibuprofen ~10 mg/kg every 6–8 hrs, scheduled (Swedo’s “around-the-clock Advil”), or naproxen ~5 mg/kg twice daily.
(b) A targeted antibiotic — throat culture if you can, but you can start empirically. Pick one: Amoxicillin (first-line strep) · Cephalexin / Keflex (penicillin-allergic) · Azithromycin (covers strep and Mycoplasma). Swedo runs a full 3-week course.
A simple, gentle place to start: Dr. Andrew Baumel’s long-term combo (155+ kids, 6+ yrs): Cephalexin 50 mg/kg/day + Naproxen 5 mg/kg — no steroids or IVIG for mild-to-moderate cases. His interview →
Get the starter bloodwork. With treatment underway, draw the initial labs.
tap for the list ›
ASO + anti-DNase B (strep) · throat & perianal culture · Mycoplasma IgM/IgG + PCR · CBC, ESR + CRP · ANA · immunoglobulins (IgG/A/M/E) · ferritin · vitamin D · B12 + folate · thyroid (TSH, free T4). The “What to test” roadmap below shows where to self-order + what to add if it stalls.
Results back → treat the exact bug. Match the drug to the bug — the “antibiotic for each bug” card below has the per-bug doses.
Treat the symptoms in parallel.CBT / ERP and often an SSRI for the OCD, anxiety & tics while the medical treatment works.
Worked, but can’t come off it? If they slip every time you stop, a root cause is holding the door open.tap for what to do ›
Antibiotics eventually wear off. This is your turn into functional medicine. Don’t wait — get the deeper tests done NOW (the second tier below) to find what keeps re-triggering it.
Still not enough? The IVIG decision — but pause. The conventional protocol escalates to IVIG; the smarter move is usually functional medicine first, so IVIG doesn’t backfire. See “The IVIG decision” below.
In Dr. Swedo’s own words: “This is a curable disorder. Remain hopeful.”
Empiric while you wait: Azithromycin (covers strep + Mycoplasma) or Augmentin (broad). Your prescriber picks the drug + dose.
How long — and when to come off. Give the Phase 1 antibiotic a real trial: ~10 days up to a 3-week course (with around-the-clock anti-inflammatory). Clearly improving? Finish the course. No movement after ~10–14 days? Strep likely isn’t the (only) driver — don’t just keep refilling: reassess, switch the drug to the actual trigger, or move to Stage 2. Plan B’s stance: targeted antibiotics at acute flares, NOT chronic open-ended prophylaxis (the microbiome cost in a growing kid outweighs it). Phase 1 antibiotics are non-negotiable — but once it’s done, a family can choose a more natural path from there.
If your child SLIPS once off the antibiotic — what next. A relapse is a clue, not just a refill.Re-test / re-culture first (same strep back? a new exposure? a missed co-infection?). If a treatable infection is reconfirmed, re-treat the acute flare — a relapse that responds again supports the immune-trigger picture. But repeated slips mean the door is being held open — your signal to move to Stage 2: run the full infection panel (Lyme / Bartonella / Mycoplasma), check the immune system (low immunoglobulins / SPAD → the IVIG conversation), and look at mold + the other drivers. Don’t answer chronic relapse with endless antibiotics — answer it by finding what keeps letting it back in.
Dr. Baumel’s gentle early protocol ›
A board-certified pediatrician’s simple, long-term combo (155+ kids over 6+ years): Cephalexin (Keflex) 50 mg/kg/day divided twice a day + Naproxen sodium 5 mg/kg/dose, used slowly and long-term — no steroids, IVIG, or Rituximab for mild-to-moderate cases. Most early-caught kids respond. Read his interview →
Anti-inflammatories — which, how much, how long (+ natural) ›
NSAIDs — first-line, AROUND THE CLOCK:Ibuprofen ~10 mg/kg/dose every 6–8 hrs, scheduled (not as-needed) — Swedo’s “around-the-clock Advil” — or Naproxen ~5 mg/kg/dose twice daily (longer-acting, easier for the long haul). How long: through the flare; give it a real ~2–4 week trial to read. Some kids ease, some don’t — no response does NOT rule out PANS. Take with food; avoid with bleeding or kidney issues.
Steroids: tread lightly. A prednisone / prednisolone burst (typically ~1–2 mg/kg/day for ~5 days, or a short taper, set by your prescriber) can be curative for some kids — but it can make others WORSE, especially if Lyme is in the picture (steroids suppress immunity and can flare a hidden infection). Treat it as a careful, supervised trial, not a default — and test for Lyme (IGeneX) before steroids in any endemic-area or chronic kid.
Natural anti-inflammatories (Swedo also says “lots of fish oil”): high-dose omega-3 / fish oil — a real dose (~1–2 g+ combined EPA/DHA), not a token gummy · curcumin / turmeric (a bioavailable form — phospholipid or with piperine) · boswellia · quercetin (also mast-cell stabilizing) · luteolin (for neuroinflammation). Gentle, stackable, and the backbone once you taper the NSAID.
↔ Anti-inflammatories calm the brain while you treat the cause — they buy relief, they don’t fix the driver. Pair them with the kill + the root-driver work, not instead of it.
Don’t rush to IVIG. The conventional Stage 1 protocol escalates moderate-to-severe kids straight to IVIG (and steroids / plasmapheresis). Plan B’s honest take: pause first. IVIG can backfire if the immune system is still being re-triggered by an untreated infection or ongoing mold exposure — you’d be calming a fire while the match is still lit, and the effect fades. Don’t jump straight in. Go to functional medicine FIRST to find the driver no one found — then, if it’s truly autoimmune and the trigger is handled, IVIG is on the table. The two cards below explain how IVIG works and how families get it covered.
About IVIG — why it works for some, not others ›
What it is: immune-modulating immunoglobulin (1.5–2 g/kg, split over 2+ days) that reboots the misfiring immune attack on the brain. Response is often delayed 2–3 weeks; most kids need 1–3 courses.
Why it works for some: when the driver is truly autoimmune / inflammatory and caught reasonably early, IVIG calms the attack and the child turns a corner.
Why it fails for others: if the match is still lit — an active, untreated infection or ongoing mold exposure — the immune system keeps getting re-triggered and the effect fades. It also underwhelms when under-dosed, given as a single course, or when the problem isn’t actually immune-mediated.
Before you get IVIG: ① treat the active trigger first (strep source, Lyme, mold) — don’t IVIG into an untreated infection · ② remediate mold in the home if present · ③ document objective findings for insurance (low pneumococcal titers / SPAD, autoantibodies, MRI/EEG, family autoimmune history) · ④ pre-medicate, hydrate & split the dose — especially with MCAS / histamine · ⑤ get the letter of medical necessity + autoimmune-encephalitis coding ready.
IVIG — how families get it covered ›
Code it as autoimmune encephalitis — the lever until there’s a PANS-specific code (6 states require coverage: CA, CO, IL, MD, OR, RI).
Letter of medical necessity mapping the treatment to the insurer’s own policy criteria.
Letters from multiple providers — several states require a PCP + a specialist to jointly attest.
Attach the peer-reviewed evidence (the Perlmutter IVIG/TPE trial, the Consortium guidelines).
Antibiotics: recent-onset kids often improve within days to a few weeks of the right one.
Anti-inflammatories: a 6-week trial; many kids slip when it’s withdrawn — itself a sign it was helping.
Steroid burst: works best within 1–3 days of a flare; flares treated early ran ~6 weeks vs ~11 untreated.
The escalation rule: early beats late, and when first-line fails, second-line helps — so you escalate, you don’t wait.
When to pivot: if a kid stops responding to immune treatment entirely, the guideline itself says shift toward rehabilitation — and that’s exactly where Plan B starts hunting for the driver no one found.
What to test — and when
You don’t need every test at once. Start simple. Only go deeper if the protocol isn’t getting your child all the way back.
1 · Order these first
At the start — alongside the protocol.
Strep: throat culture + ASO / anti-DNase B titers — the classic trigger
How to actually order these — three ways: 1. Self-order, no doctor — Walk-In Lab · Quest (QuestDirect) · Labcorp OnDemand (the standard panels). 2. Hand your doctor the list — print the panel above and ask them to order it; even a PANS-unaware pediatrician can run the common ones. 3. An online / telehealth doctor — for the specialty labs (IGeneX, Galaxy, mycotoxins), a telehealth lab-order service orders them and sends the requisition / paperwork to you or the lab. Minta hands you the exact list to run and the paperwork to bring — just ask.
Feels like too much? It’s not your job to figure this out. Hand it to Minta — upload whatever you have, and she’ll tell you which tests to order next, then read every result when it comes back and help you get to the bottom of it. Order a Synthesis →
Welcome to functional medicine →
2
Stage 2 · Functional medicine
Find the root drivers
Go deeper than infection. Each root is its own subset — tap any one to see its tests and what each one finds. Several tests overlap (noted inside), and Lyme often sits upstream.red = the tests I'd call essential
Don’t know how to read any of this? You don’t have to. Plan B interprets and synthesizes every lab for you — pulls it all together and tells you exactly what it means and what to do next.
Always at intake: folate / B12 (+ homocysteine; + FRAT for every PANS / autism kid). And ZRT urinary neurotransmitters — an important part of the picture. (below: folate under Nutrients · ZRT under Neurotransmitters)
How to order: many you can order yourself — folate, B12, immunoglobulins, tryptase, vitamin D → Walk-In Lab · Quest Health · Labcorp OnDemand. Others need a provider (IGeneX, Galaxy, GI-MAP, mycotoxins, HTMA). Look for the green Plan B pick tag for the lab we trust most. Not sure which test your child needs, or how to get it? That’s exactly what Plan B walks you through.
New to PANS? Start here
These you can self-order today (Walk-In Lab · Quest Health · Labcorp OnDemand) — one blood draw, no doctor:
Then layer in: 23andMe ($99, genetics) → and the functional tests below (mycotoxins · GI-MAP · OAT) once you know where to look. Plan B tells you which, in what order.
Lyme & tick-borne ›
Borrelia · Bartonella · Babesia · Mycoplasma · Ehrlichia — often the upstream root
tap for tests + what they find
IGeneXPlan B pick (Western Blot / ImmunoBlot) — far more sensitive than the standard CDC two-tier; catches the bands conventional labs miss.the CDC two-tier misses up to half of cases; IGeneX reports species-specific bands and catches early + late infection others call negative.igenex.com — patient self-order + mail-in kit (most states).
Galaxy Diagnostics — the Bartonella gold standard (triple-draw + PCR + enrichment culture).
T-Labs — broad tick-borne co-infection panel.
DNA Connexions — urine PCR for Borrelia DNA after a provocation dose.
↔ Overlaps: Mycoplasma is also a Stage-1 trigger. Treating Lyme often calms the mold, gut, methylation & MCAS drivers below.
Kill it. Antibiotics matched to the bug (combinations — single drugs fail), herbals (Buhner/Cowden), biofilm busters, then the deeper menu (dapsone, biomagnetism, hyperthermia, bee venom, methylene blue, phage). The full kill-menu — per-bug dosing, recommended combinations, how-fast-should-it-work timelines, biofilm timing, and how to vet a practitioner — is in the Lyme Field Guide entry.Open the Lyme Field Guide ›
Mold / CIRS ›
test the child and the house
tap for tests
Urine mycotoxins — RealTime LabsPlan B pick (or MyMycoLab · Mosaic / Great Plains MycoTOX · Vibrant) — measures the actual mold toxins stored in the body.measures the actual mycotoxins making the child sick (not just antibodies); the longest-running validated mycotoxin lab.realtimelab.com — patient-direct ordering.
VCS screen — a 5-minute visual-contrast test for biotoxin exposure.
C4a · TGF-β1 · MSH · MMP-9 · VIP · VEGF — Shoemaker inflammatory markers: how hard the immune system is reacting.
HLA-DR — the genetics: whether the body can clear biotoxins at all.
ERMI / HERTSMI-2 — a mail-in dust test of the house. Know this: it’s an EPA research tool, NOT validated for individual homes (yet sold as the “gold standard”) — it can find a real problem or make you panic over nothing.The honest ERMI story + how to test your home yourself ›
↔ Overlaps: the OAT also appears under Gut + Nutrients.
Treat it. Remove exposure → binders (the 3 schools: Shoemaker pharmaceutical / O’Hara gentle / Crista food-based — match to the kid) → antifungals → drainage. Order matters.Full mold protocol ›
Methylation & detox ›
Walsh · Yasko · MTHFR / COMT / CBS
tap for tests
23andMe + StrateGenePlan B pick — the SNPs (MTHFR, COMT…): your genetic tendencies. Start here ($99 + free).covers every major methylation SNP for $99, and StrateGene maps them onto the pathway free — the same SNPs the $400 panels report.23andMe.com → download raw data → upload to StrateGene (free).
Homocysteine + MMA — functional markers of whether methylation is working right now.
HTMA — hair tissue mineral analysis: minerals + detox status. Genuinely important — it’s how families catch and track things like high copper.The catch: most HTMA practitioners are trained by the labs selling the test and follow the company’s algorithm — kitchen-sink advice that often contradicts your specialists, leaving you unsure who to trust. The test is valuable; the interpretation is the problem. Minta reads hair + blood + OAT together, through the Walsh protocol — the cross-test synthesis no single specialist seems to do.
Upgrades: Yasko panel · IntellxxDNA · whole-genome — practitioner-curated reports (curation, not more data).
↔ Overlaps: folate / B12 + HTMA also live under Nutrients (and folate is an always-at-intake test).
GI-MAPPlan B pick — PCR stool: pathogens, H. pylori, parasites, dysbiosis.quantitative PCR (not culture) — catches pathogens & dysbiosis culture misses, with numbers you can re-test against.Rupa Health or DirectLabs — patient-pay, no practitioner in most states.
Helminths / parasites — an O&P (ova & parasites) stool test plus the GI-MAP parasite panel catch worms & protozoa standard panels miss. Helminthic therapy (deliberate, controlled hookworm / whipworm exposure) is also an emerging immune-modulation approach for autoimmune & allergic conditions — early evidence, real interest.
↔ Overlaps: the OAT also flags mold (fungal markers) + nutrient need.
Reset it. Clear pathogens / candida → rebuild with diet + targeted probiotics — oral, and for deeper seeding, targeted probiotic retention enemas (a gentler, lower-cost step in the same family) → for stubborn dysbiosis, the deepest reset is FMT.
FMT(fecal microbiota transplant — the “poop transplant”) — a healthy donor’s microbiome transferred in to reboot the gut-brain axis. The honest picture: FDA-approved only for recurrent C. diff; for autism / PANS it’s experimental. The ASU autism trials (Kang / Adams) showed durable gains — a ~45% drop in autism severity (CARS) still holding at 2 years, with gut + behavior improvement.⚠ DIY FMT is dangerous — never in kids. Go supervised + screen the donor. Routes: clinical trials, or supervised international clinics (e.g. Taymount; ProgenaBiome / Dr. Sabine Hazan). MCAS / histamine caution — a brand-new microbiome can flare reactive kids, so go slow and watched.
TryptasePlan B pick — mast-cell burden (draw at baseline AND during a flare).the one validated, reproducible mast-cell marker; a baseline-vs-flare comparison is the evidence an allergist / immunologist accepts.Walk-In Lab · Quest Health · Labcorp OnDemand.
Plasma histamine — circulating histamine right now.
Whole-blood histamine — total histamine load stored in basophils & mast cells (also the Walsh methylation marker for histadelia). Good for the overall picture; for an acute MCAS flare, plasma histamine + tryptase + urine N-methylhistamine read the real-time activation better. Use them together.
DAO — the enzyme that clears histamine; low DAO = it builds up.
↔ Overlaps: whole-blood histamine is also a Walsh / methylation marker.
Neurotransmitters ›
the chemistry behind mood · OCD · rage · anxiety
tap for tests
ZRT urinary neurotransmitters — serotonin · dopamine · GABA · glutamate · norepinephrine · PEA. An important part of the picture (a pattern signal — best paired with the OAT below).
OAT neuro-metabolitesPlan B pick — HVA (dopamine) · VMA (norepinephrine) · 5-HIAA (serotonin) · quinolinate / kynurenate (neuroinflammation).mass-spec metabolites reflect real neurotransmitter turnover — more validated than urinary neurotransmitter panels, and it doubles as a gut / mito / fungal read.DirectLabs or the Mosaic patient portal.
↔ Overlaps: the OAT also flags mold + gut; GABA / glutamate tie back to methylation.
Nutrients & minerals ›
thiamine · copper · zinc · iron · magnesium · B12 / folate · vitamin D
tap for the full panel
Folate + B12Plan B pick (+ homocysteine, MMA) — methylation cofactors + whether they’re working. Always at intake.cheap + functional — homocysteine + MMA show if they actually work, not just sit in range.Walk-In Lab · Quest Health.
FRATevery PANS / autism kid — folate-receptor antibodies. Run it straight out of the gate. Blood folate can look normal while these antibodies block folate from reaching the brain (cerebral folate deficiency) — a missed, treatable driver of regression, OCD, and neuro symptoms. An important box to check.If positive: supplement leucovorin (folinic acid) — it bypasses the block and gets folate into the brain; results can be dramatic. ⚠ Do NOT take leucovorin unless you’re FRAT-positive and actually need it — given when it’s not needed, or pushed too fast, it can cause real flare-ups. Low and slow. A dairy-free trial can also lower the antibodies. Experts: Nancy O’Hara · Emily Gutierrez · Drs. Daniel Rossignol & Richard Frye (who pioneered FRAT + leucovorin).FRAT needs a provider (Religen / Iliad labs).
RBC thiamine (B1) — true B1 status (serum misses it).
Ceruloplasmin + copper:zinc + %-free copper — the copper–zinc balance Walsh centers on.
RBC magnesium / minerals — intracellular status (serum misses it).
Ferritin + iron studies — iron stores (low → restless sleep, worse symptoms).
Vitamin D (25-OH) — immune regulation (target >30, ideally 50+).
The full mineral picture: pair HTMA (hair) with RBC / serum minerals, copper + ceruloplasmin, zinc, and the Walsh panel — then let Minta synthesize them together. Hair and blood tell different halves of the story; reading them as one is where the answer lives — and where no single specialist seems able to go.
↔ Overlaps: HTMA + folate/B12 also live under Methylation; OAT under Mold + Gut.
Immune function ›
antibody deficiency (SPAD)
tap for tests
Immunoglobulins (IgG / A / M / E) — overall immune levels.
IgG subclasses — partial deficiencies hiding behind a “normal” total.
Pneumococcal titers (pre/post vaccine)Plan B pick — can the body make protective antibody? Low = SPAD → the door to covered IVIG.low titers + low IgG / IgA are objective, insurance-recognized proof of immune deficiency — an independent path to covered IVIG.Walk-In Lab · Quest Health (some require a provider).
↔ Overlaps: low titers / SPAD is the bridge to IVIG (see Stage 1).
The order you target these matters — a lot. Some kids need mold cleared before Lyme. Some need methylation supported first so they can even detox. Some need a virus taken out first. The wrong sequence can set a child back — and the right one unlocks everything. Finding the right order for your child is exactly what Plan B does.
⏱ When do you start adding supplements? Treat an active infection right away — but hold the deeper protocols until you have your test results (so you target, not guess), the drainage / detox pathways are open, and an acute flare has calmed. Then add one thing at a time, a few calm days apart, so any reaction is traceable. Plan B paces this for you.
The IVIG decision
Is IVIG right — and right now?
IVIG can be the thing that turns a child around — but rushed, it backfires. It’s usually right when most of these are true:
You’ve treated the active infections — don’t IVIG into a lit match.
You’ve tested and at least started treating Lyme / co-infections, if present.
You’ve confirmed a real immune deficiency (SPAD / low IgG) — the actual indication, not just “PANS.”
You know you’re covered (the insurance test below).
The case is severe enough that the work above hasn’t been enough.
How to test whether insurance will cover it: insurance denies IVIG for “PANS” but covers a documented immune deficiency — run immunoglobulins (IgG/A/M/E) + IgG subclasses and the Pneumovax 23 pre/post titer challenge (poor response = SPAD). Then it’s billed under immunodeficiency (approved), not PANS (denied).
This is the point where most families are told there’s nothing left to try. There is. If you’ve run the protocol, chased the drivers, and your child still isn’t all the way back — biomagnetism, phage, hyperthermia, peptides, HBOT, TruDOSE PRP, classical homeopathy, and more are still on the table. This is where the search stops being a dead end and becomes a map.
Every one is deconstructed in the Field Guide — what it is, the research, the risks, how to actually get it, and how to vet a practitioner — backed by studies and real recoveries. The search isn’t over. This could be where it ends.
You’re not the first to walk this. One mother had already tried everything the system offered before she found Plan B:
A functional-medicine doctor — helpful, but expensive, and still only one piece of the puzzle.
Three years of homeopathy — gentle, but slow, with no map of what was actually driving it.
Pediatrician after pediatrician — most had never heard of PANS, or didn’t believe it.
Then Plan B found the order. The same pieces, finally read together — and treated in the right sequence.
It was never about trying more things. It was about the right things, in the right order.
Not “managing.” Not “a little improved.” Your child, back.
Don’t forget the source
Treat the house — not just the child
Mold, dust, and strep live in the home too — if the source stays, your child keeps getting re-triggered. Plan B’s mold guide walks you through finding it and fixing it yourself, without paying someone to scare you. Find & fix mold in your home ›
Alongside every stage — from day one
Support the whole child
The medical work calms the fire — this helps the brain recover, the body detox, and the family cope. At every stage, not just the end.
Mind & nervous system
CBT · ERP (OCD) · EMDR · vagus-nerve work · craniosacral therapy(look for an Upledger Institute–trained practitioner — it looks like light head-holding, but subtle body work is happening. No formal studies, but it’s gentle and low-risk, so it’s worth trying early as a calming adjunct — best for nervous-system regulation and post-concussion recovery. Just don’t expect it to clear infection on its own.)
Body, recovery & detox
movement & exercise · red-light therapy · sauna · ionic foot baths(one family watched high copper come down over ~2 months of daily baths — the device runs ~$2K and the plates need upkeep; worth re-testing HTMA to see if it’s working) · detox & drainage(binders · lymph · hydration)
You don’t do this alone — or guess
The Plan B Synthesis
Plan B reads everything at once and tells you which tests for your child, what the results mean, and exactly what to do next — direction at every step. It synthesizes your child’s daily logs with the latest research and everything else that’s out there, and keeps adapting as your child changes. No single specialist has the time to hold all of this at once. Plan B does.