How a neuroscientist solved the mystery of his own long COVID

[Amw66]

https://www.youcanknowthings.com/how-one-neuroscientist-solved-the-mystery-of-his-own-long-covid-2/

Interesting article, sadly few have access to this level of testing

Ritixumab being used

 

[hotblack]

Yeah, it’s the difference between research and treatment too I think.
Most of us have access to and interactions with health services, which are really treatment services. Investigations performed are just to find which predefined path we are put on, not to understand something.
If there isn’t a predefined path then you’re pretty much out of luck.

The mention of CIDP is interesting, and something I came across only recently in the context of others who had significant reactions to the covid vaccines.

 

[Snow Leopard]

CIDP is not Long Covid and has established diagnosis and treatment, although looking at stories on reddit /GBS, patients frequently seem to have delayed or misdiagnoses.

 

[forestglip]

You Can Know Things: 'How a neuroscientist solved the mystery of his own long COVID' (blog)

Jan 07, 2025

(Bolding added by me)

When Jeff Yau started having strange symptoms after his COVID-19 infection – numbness, tingling, and shaking – he experienced what thousands of others with long COVID have found: answers were hard to find, and treatments weren’t working.

But Dr. Jeff Yau was in a unique position: he’s a neuroscientist who runs a lab studying how nerves allow us to sense and perceive the world.

Back at the doctor, testing revealed changes in Jeff’s nerve and muscle function that hadn’t been there months ago. A spinal tap, where fluid was extracted from Jeff’s spine, was the first step to unlocking the mystery of his symptoms: he had an autoimmune disorder called chronic inflammatory demyelinating polyneuropathy (CIDP).

But IVIG wasn’t working, and his symptoms worsened.

In the laboratory, Jeff looked under the microscope at rat nerve tissue that had been treated with his antibodies. Bright colors indicated where his antibodies were attacking the nerve.

More tests revealed the identity of the antibody causing Jeff’s symptoms: an antibody that binds to neurofascin 155, which is a protein that connects the myelin insulation to the nerve.

Pieces of the puzzle began to fall into place: IVIG, the treatment Jeff was receiving, does not work for patients with the neurofascin 155 variant of CIDP. This is because neurofascin 155 antibodies are different from other antibodies: they can bind to myelin without using the resources that IVIG targets.

Jeff brought this information to his doctors. They decided to try plasma exchange treatment instead, which filters the blood and tends to be effective against the neurofascin 155 variant of CIDP. But despite undergoing plasma exchange every two weeks, Jeff’s symptoms kept getting worse.

The measurements showed that Jeff’s neurofascin 155 antibody levels were successfully reduced the day after plasma exchange, but by the time Jeff received his next round of treatment, the levels went back up again. Plasma exchange was not reducing Jeff’s antibody levels fast enough to make a difference in his symptoms.

He started receiving rituximab, a drug that kills the cells that produce antibodies.

“I’m improving a lot now,” Jeff says, “but I don’t feel like I’m anywhere close to being back to baseline or whatever my new baseline will be.”

 

[forestglip]

Interview with the same person on the same blog a few weeks later:

A conversation with a neuroscientist who developed long COVID

This is mostly about what it's like being a scientist with long COVID, how does he feel about the pandemic. Not really any more science of his condition.

 

[MrMagoo]

Man who works in neuroscience fails to cure own disability; is praised for curing own disability.

We can all write daft headlines.

 

[Utsikt]

So he developed CIDP due to a Covid infection?

 

[forestglip]

So he developed CIDP due to a Covid infection?

All he knows is the timing matches up, but he can't be sure it's the cause.

Correlation does not equal causation, and although Jeff's symptoms showed up shortly after COVID-19 infection, it's impossible to say with certainty what caused Jeff's illness.

'The hard thing, just like with my own diagnosis of CIDP, is that I can’t say this was definitively due to COVID infection, even though the timing is very much consistent. My view of COVID is let me just not get it again.'

 

[Utsikt]

All he knows is the timing matches up, but he can't be sure it's the cause.

That’s a reasonable take on it. It’s a shame the title isn’t as nuanced.

 

[poetinsf]

This is the problem with "Long COVID". You can cure your post-COVID anosmia with garlic or something and say that you cured your own Long COVID.

 

[bobbler]

https://www.youcanknowthings.com/how-one-neuroscientist-solved-the-mystery-of-his-own-long-covid-2/

Interesting article, sadly few have access to this level of testing

Ritixumab being used

Interesting

and odd to read just after I’ve read the thread on Suzanne o’Sullivan, who was also apparently a neurologist, but also a storytelling author, where the latest is her giving her options on long covid and psychosomaticism and then goes on to start listing many other specialty clinics she says 30% of patients attending are psychosomatic like respiratory and gynaecology