Encephalitis Medical Bills

Here are the potential medical costs my brother and I are facing, as we are both dealing with the same disease:

IVIG - $140,000

PLEX - $200,000

Total - $340,000

Since September 2021, I’ve been experiencing radical symptoms of encephalopathy, from hallucinations and extreme paranoia to visual disturbances and psychosis. It’s been a grueling path getting blood work, a spinal tap, being misdiagnosed as bipolar in the psych ward, seeing many neurologists, and now finally getting some treatment. In April of 2022, I received 3 high-dose steroid infusions, which significantly improved symptoms but did not result in full resolution. In July of 2022, I received an additional 3 days of IV steroids. This time there was no improvement. While our working diagnosis is autoimmune encephalitis, or severe brain inflammation, we lack the necessary specific markers to confirm the diagnosis. Instead, we are forced to view treatment as experimental.

The next step in treatment is IVIG, a costly medication that insurance is unlikely to cover given my lack of specific markers. Cost out of pocket is likely to be around $70k per person, or $140k total for my brother and me. If we have a partial response, then PLEX (plasma exchange) would be the next first-line treatment, which would total $100k each. We will likely have to pay the sum of these bills out-of-pocket because our elevated markers (particularly elevated protein in the spinal fluid, indicating brain damage) are non-specific for encephalitis, meaning insurance won't want to cover it. I have been out of work for a year due to this illness. The total cost for treatments is a significant financial stretch for my family, considering both my twin brother and I have this condition. We don’t know if we’ll need to pursue further treatment after IVIG or start looking for a diagnosis from scratch if we have no response. There are a lot of unknowns, but what is certain is our path to health will be expensive. So I’m here asking for some support for medical bills, this upcoming treatment, and money to continue paying normal life bills. Thank you.