Dear Christoff

I see so many alarming parallels with my own experience and your wife's. (though I 'm in the UK). I could go on about myself and the debilitating neurological symptoms I've experienced. This is why I'm compelled to write.

I'm no Doctor, just a reasonably well educated lay person who had to learn self advocating.

The 'FND' I was diagnosed with was essentially cured by 12 months of heavy dosage combination antibiotic therapy. Like yourselves, I didn't buy into the FND diagnosis. I followed my instincts and sought the opinion of a private specialist (not a neurologist!) Also I share the same concerns about the whole FND thing. It's now my special pet hate. FND as you know isn't curable with antibiotics, any more than infection isn't curable with CBT. As far as I'm concerned FND = Frankly No Diagnosis. Don't let the rigid dogmatists get you down!

(Have you come across David Tuller's posts?)

https://virology.ws/2020/01/07/trial-by-error-some-more-thoughts-on-functional-neurological-disorder/

If I had bought into it, I'd have no doubt deteriorated significantly as this was my overall trajectory. I'd have a worse visual field deficit (I developed optic atrophy), I'd be wheelchair bound as my legs stopped working, and still be having what was assumed to be psychogenic seizures. Like your wife I also recall unpleasant odours, (smell hallucinations) to name but a few of a vast array of weird neurosymptoms I've experienced. I had years of medical investigations (and gaslighting) which found nothing. I too was investigated for MS, had tremors, ataxia, balance and sleep issues. Had an LP. Also negative.

I was too difficult a patient. Too threatening to their egos maybe? I'm a middle aged female, with non specific symptoms and was told they were most likely an abnormal response to normal phenomena. In other words, Doctors didn't believe me and I conveniently fit the (hysteria) profile.

My Lyme tests came back repeatedly negative. Though Dark field microscopy of my blood told a different story.

I only found the real cause of my symptoms when I sent blood off to a lab in Hungary. Not only did I have a chronic Lyme infection, but common co- infections Babesia and Bartonella, one of which needs antimalarial treatment as it does not respond to most antibiotics. It showed up bacterial fragments with (fluorescent) very specific markers attached, so no possibility it was anything else other than borrelia sl., the Lyme bacteria. My antigens were bound up, so I never would test positive for Lyme with standard testing methods. These need to be freely circulating in the blood to be detectable by commonly used Lyme antigen tests. Thus supporting the scientific evidence these tests are only right half the time at best.

My hair was also falling out, but stopped after the first day on antibiotics.

I would seriously consider if you already hadn't some kind of chronic zoonotic infection, not easily detectable by standard methods of medical testing. There are many, quite a lot Dr.s have never even heard of, or would deny exist in your country. (Tick borne diseases are carried in ticks on migrating birds). In which case prednisone may not be the best solution in the long term for you wife. With Lyme like infections it has temporary relief but with immunosuppression any potential underying infection can flourish making deterioration of health inevitable. If autoimmune in nature, it should reverse the disease. Steroid resistant disease may be a red flag for disease of infectious nature.

I still have Babesia as even after treatment the lab managed to culture it from my red blood cells. Also I still feel symptoms though thankfully much less neurological than they were. Though fatigued I'm a whole lot more functional, my tremors stopped, my legs work again and no more photophobia/hyperacuisis/ seizure like events.

One distinguishing hallmark of Lyme, is how symptoms shift around the body. One day there's tingling or numbness in one arm the following day it might be in your diametrically opposed leg. Cranial nerves and spinal nerve roots are commonly affected causing inexplicable back pain and fasiculations. Could her facial assymmetry be Bell's Palsy?

If there are ticks where you live, there's tick borne zoonotic infection without a shadow of doubt. In my relentless search for answers I came across papers which show Babesia infection can co exist with Malaria. And that Babesia is also found on the African continent.

Also might be worth noting while most clinicians know little to nothing about these infections, vetenarians do. Babesia causes red water fever in cattle.

I Had bites from ticks which came off pets so exposure risk is not always that obvious either.

This link may be of use. There's a form to check for possible exposure risk you and your wife may have had to pathogens and parasites.

https://www.parasiteclinic.co.uk/

I really hope this is helpful in some way, and you get to the bottom of it. Follow your instinct, there's always hope. Best wishes to you both.

Regards, mel in the UK

I found this powerful and moving monologue by Alice Richmond, a PhD researcher at the Shakespeare Institute, reflecting her personal experience with FND.

https://thepolyphony.org/2025/04/11/barely-functional-exploring-functional-neurological-disorder/

And part two https://thepolyphony.org/2025/04/11/hysteria-2-0-functional-neurological-disorders-gendered-her-story/

A retrospective on the influence of gender on what we now call FND, tracing it's origins from female hysteria.