IVIG: The $20K Mystery Treatment

It’s the holy grail for some, denied to most. What exactly is IVIG, who qualifies, and how do you fight the system that gatekeeps it? We’ve got answers.

IVIG.

It’s whispered in rare disease forums like a mythical cure. Expensive. Elusive. Sometimes life-changing.
But also? Frequently denied. Rarely explained. And completely misunderstood by most providers.

So what’s the deal with IVIG (Intravenous Immunoglobulin)?

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The Basics: What Is It?

IVIG is a blood product made from pooled plasma donations. It's used to modulate the immune system—either by calming it down (in autoimmune cases) or boosting it (in immune deficiency cases).

For EDS patients, it’s occasionally recommended in cases where there’s:

• Immune dysfunction (frequent infections, abnormal antibody production)

• Autoimmune overlap

• Small fiber neuropathy with an autoimmune component

But insurance? They make you jump through flaming hoops.

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Who Might Qualify?

• Positive ANA or other autoimmune markers

• Documented low IgG subclasses or abnormal vaccine titers

• Confirmed small fiber neuropathy on biopsy + symptoms

• Repeated infections or immune deficiency labs

Even then—many are denied. That’s where strategy comes in.

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How to Advocate:

1. Get a Neurologist or Immunologist on Board
   Not just any doc—someone who understands rare conditions + is willing to document in detail.

2. Collect Data
   Track infections, autoimmune flares, biopsy results, immune labs. Create a timeline that shows decline and failed treatments.

3. Push for Peer-to-Peer Review
   If denied, request your doctor schedule a peer-to-peer call with the insurer. These sometimes override the “no.”

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Side Effects & Considerations

• Can cause migraines, fatigue, allergic reactions

• Requires regular infusions (usually monthly)

• Costs thousands per session—insurance coverage is essential

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Is It Worth It?

For some zebras, absolutely. Especially those with SFN, immune overlap, or systemic inflammation that resists standard meds.

But it’s not a silver bullet. It’s a powerful option—if it fits your body’s puzzle.