I was recently diagnosed with anti-NMDA receptor encephalitis

Loratadine plus famotidine worked for years for me (I have mastocytosis).

Switching to a keto diet helped way more, though. I still get flushes, rashes, etc., but the severity has gone down to the point they are random annoyances that go away as opposed to medical events.

Cromolyn and/or ketotifen are the big guns for mast cell disorders, though.

Thank you for writing this. As a fellow traveler on the autoimmune encephalitis (AE) journey, it’s rare to see this condition mentioned outside a specialist neurology setting.

Three years ago, I was diagnosed with LGI1 autoimmune encephalitis (and yes, for those following along, AE comes in several varieties). While I never experienced the degree of psychiatric symptoms you unfortunately had to endure, I have a sense of what this disease can do and share a similar experience of testing and treatment.

For anyone unfamiliar with AE, imagine your immune system spontaneously deciding to run an ablation test on the live neural network inside your skull. Unsurprisingly, there may be some glitches.

My first symptoms were brief “twitches” that appeared simultaneously in my left arm and face. I later learned they were seizures. An urgent care physician prescribed a muscle relaxant and sent me on my way. Fortunately, I was persistent—and it helped immensely to have a supportive and equally persistent spouse. I was able to get in front of a neurologist quickly, and based on my symptoms she immediately suspected AE. By sheer luck, it was her area of expertise.

I was hospitalized immediately and underwent ten days of intensive treatment. That rapid diagnosis and intervention likely spared me a much more difficult recovery and outcome.

Today, life is mostly back to normal. I’ve been able to discontinue both anti-seizure medications and scheduled infusions. I still experience more physical and mental fatigue than I did before AE, and there are memory gaps around the time of my diagnosis. The disease also launched me into an ongoing cancer and B-cell surveillance journey. These days, I have to pace myself and consciously manage my energy in ways I never had to before.

Another challenge is living with the immunosuppression that resulted from treatment. Yes, I’m still the person masking up in our supposedly post-pandemic world.

For what it’s worth, I’ve found creatine helpful for mental focus and clarity (admittedly, a sample size of one).

Wishing you the very best, and I hope the CIELO trial delivers positive results for all of us.

> US has taken an absolute nose-dive several times over the past decade or two

This is also my field... and if the nose-dive is what has delivered in these past two decades RNA-seq, induced pluripotent stem cell generation, CRISPR-mediated genome therapies, CAR-T therapy, single-cell RNA and DNA profiling, spatial transcriptomics, targeted GLP- and incretin-modulation therapies? Then that's a wonderful nosedive.

The capital investment has always been true if you want to do R1 research. But you don't have to do that at all! There's also Oxford Nanopore, tons of open data through NCBI and other resources, more open papers than ever.

> It also requires a broad and deep skill set.

Yes. Like anything, being good takes time.

> Academia can no longer support a huge swath of biomedical research.

Maybe. I think there will be money for things that affect the rich (incurable cancer, longevity) and for things that are sexy to the unsophisticated (CZI Biohub 'OpenCell'). But there is money in this, so I don't think academia (to wit, people who know how to do research) will go away, just will change.

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I agree with everything you just said.

I believe these are very difficult but not impossible problems. There are technical limitations to our measuring tools, but I am optimistic that future medical advancements (maybe far in the future) will provide ways of measuring and diagnosing that may seem like science fiction today.

I am not attempting to trivialize the work that medical professionals do, or fault doctors for being fallible. I am attempting to encourage the development of medical technology to cut down on what I perceive to be a high rate of misdiagnosis (10-15%).