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ANTIBIOTICS CURED ME OF FND !
Personal account of complex neurological and systemic symptoms following a tick bite, with a clinical diagnosis of FND made after extensive negative or inconclusive investigations. The author proposes an infectious origin involving Lyme disease and other tick-borne infections and reports improvement following targeted antibiotic treatment.
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9MBOI, Dr Richard Horowitz, veteran tick born-diseases practitioner from the US, discusses FND on his medical detective substack;
Functional Neurological Disorder (FND): Potential Answers To A Common ‘Idiopathic’ Condition
and how tricky-to-detect infections can mimic FND symptoms. He discusses the case of a patient who suffered neuropsychiatric symptoms from the effects of multiple tick-borne infections and went into full symptom remission after targeted treatment. He goes on to discuss his 16 point MSIDS model (Multiple Systemic Infectious Disease Syndrome) as a potential driver of chronic FND like symptoms and systemic inflammation, offering a biomedical alternative to the psychosomatic explanation.
A link originating from David Tuller's virology blog ; https://www.longcovidadvoc.com/post/bps with a very interesting article, a 101 of the Biopsychosocial model (on which FND is founded). I find particularly interesting this quote;
One can easily see the problem of gender, especially as researchers were encouraged to remove women from all medical research from 1977 in the US—at exactly the same time the BPS model was established and then propagated.
May explain, at least in part, the over representation of psychosomatic diagnoses in the female population?
native“A positive sign of FCD is that you can remember what you do not remember.”
Eh? On what planet does this make any sense? More circular reasoning made to sound profoundly proverbial? How can science generate evidence of this?
“I would strongly recommend you do not listen to any of these people.”
Sable Lynx, how are you qualified and who are you really to make such strong
recommendations? Why do you hold such contempt for the agnostic who look beyond FND for answers, and may not be willing to accept it as their final destination? What does it mean to you personally? Are you THE authority being
questioned?
Questioning (even authority), is good for progress. If humanity hadn’t questioned the church, we’d still believe the Earth is flat (just one example). Blind faith just isn’t for everyone.
It’s a peculiar thing to affix a label to genuinely debilitating symptoms of unknown
origin, then suggest anyone not accepting this label, is faulty somehow. It’s a
strong case for blame shifting. Peculiar too, to be so doggedly defensive and
interpret non-compliance as an assault on FND (and everyone with it). Hardly
rational behaviour, (unless you build an empire and your life’s work depends on
it of course).
“They are people who deny their loved ones or themselves have FND which is why they continue to suffer with symptoms. It’s very sad and unnecessary. The need to be
right becomes more important than getting well.”
Total BS. How do you know any of this? It’s a sweepingly arrogant assumption. Framing scepticism as needing to be right at the detriment of loved ones is offensive and ludicrous. Personally, the need to be well far outweighed my need to be right. I was too sick to be egotistical about such trivia. The fact I was right
to pursue other avenues of investigation was incidental, (though clearly a sore point
for the FND faithful).
“Listening to people on this site will lead you down a long path of more suffering.”
An ominous piece of advice. Again, how do you know this for sure? Anecdotally, I found the opposite to be true. Looking beyond my FND diagnosis and treating the organic cause of my illness is the only reason I survived and rid myself of FND symptoms.
This sounds a lot like blind faith. We’re all human. Those of us with first-hand experience of debilitating neurological impairment should, for all intents and purposes, be on the same page. How did it even come about, this polarised narrative of 'us' vs. 'them'?
Everyone is entitled to freedom of will to question authority, and explore other avenues if FND feels like a wrong fit for them.
I sincerely hope Con can find relief from this cognitive nightmare he’s living through, whether down the FND route or an alternative one.
There is no way to redact FND! No sufficient evidence exists
that would allow a diagnosis of FND to be reconsidered. It was engineered this
way, with a degree of wiggle room Houdini would’ve been proud of. Smoke and
mirrors.
With every diagnostic loophole sewn up, all pathways to
differential diagnoses get blocked. It’s a cunning plan. And one with the added
benefit of reducing the economic burden of infinite testing and unnecessary
medication. It is indeed a patient trap, thanks to its rule in status.
On this current trajectory and increasing acceptance as
medically mainstream, in spite of having little corroborating evidence, FND is
in danger of minimising organic disease such as MS, by defining them as ‘co morbid’.
The problem being, each require different therapies. Where is the evidence of how
cause and effect relate to one another?
Ironically, Professor emeritus Jon Stone himself, is able to
find reasons to un diagnose MS. Why then can FND not be un diagnosed? (See YouTube presentation by Professor Jon
Stone on un diagnosing MS);
He goes on to explain how FND ‘trumps’ other conditions, specifically
MS, every time (11:29).
Professor Stone cites a couple of specially selected
examples of severely disabled patients, found to have minimal ‘hardware’ damage
on MRI. Such severe disability, apparently medically inexplicable, means they
must have FND. In this scenario, FND covers everything MS can’t explain.
If it’s not MS then it must be FND. If this isn’t dualistic,
I don’t know what is!
This paper co-authored by Jon Stone, discusses the clinical
overlap of FND and MS, and the diagnostic confusion.
https://link.springer.com/article/10.1007/s00415-021-10436-6
It demonstrates the abject failure of the biopsychosocial
model (BPSM) on which FND is founded, to clarify between disease symptoms with
a distinct organic cause, and symptoms with evidently nothing organic to explain
them. This is surely a subjective dichotomy?
BPSM is open to criticism;
https://journals.sagepub.com/doi/epub/10.1177/0004867420981409
https://www.researchgate.net/publication/370069918_The_biopsychosocial_model_Its_use_and_abuse
Circular reasoning and wayward discourse seem to be a
dominant feature of the FND framework, and is the logical fallacy that enables
these issues to be viewed from the wrong direction, perhaps erroneously.
How can medicine advance without the incentive to explain
the ‘whys’ of symptoms happening? (Not mentioning the potential harm to patients.)
This is another criticism of the BPSM; how it may threaten to undermine
scientific research and healthy curiosity.
The woolly explanation provided in neurosymptoms.org of FND causation suggests the question of ‘why?’ not be confused with ‘how’. https://neurosymptoms.org/en/causes/
Maybe ‘why’ is simply undefinable. Personally, I remain
completely unconvinced!
ONE FINAL POINT;
The anonymous, apparently scientifically endorsed ‘grassroots’ site ‘Lymescience.org’, use divisive fearmongering tactics, reminiscent of a Corsodyl advert; if you don’t buy their mouthwash your teeth will fall out
They are affiliated to the dark underbelly of chronic Lyme denialists, and the so called ‘Lyme wars’. A few familiar names keep cropping up e.g, Wormser, who may have questionable ethics and conflicts of interest as illustrated by this link;
https://www.lymedisease.org/wormser-wrong-choice-lyme-panel/
It’s a politically divisive minefield with some common denominators;
https://pmc.ncbi.nlm.nih.gov/articles/PMC2435453/
https://www.amjmed.com/article/S0002-9343(13)00225-8/fulltext
This one ‘s behind a paywall, but the title gives the gist of it;
Of course, none of these banal politics help patients.
(My garden’s full of Lyme ticks, can supply free of charge, if anyone’s interested!)
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?)
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
To his credit, Dr Grin was sufficiently courageous to put his name to his opinions, unlike “anonymous”. Weird thing is, I'd have no idea what he looked like until he drew attention to himself. The irony! Now all I can see is someone sadly prone to toddler style foot stamping hissy fits, practising as a clinician. Not a great advert for business! Arrogant to suggest medicine knows all there is to know about chronic conditions and neurology….. “
Opinions touted as facts ARE misinformation.
Cowardly “Anonymous” hate email, is a grim reminder of the weird post truth era we live in, where emotions trump objective reasoning. Any focus on facts gets lost in the intensity of it all, as limbic override kicks in.
I think “anonymous” may benefit from some deep breathing exercises?
Trivialising medicine is clearly not the aim here. Quite the opposite in fact. Exposing the dangers of misdiagnosed FND, and missed treatable biomedical conditions is crucial for patient safety. The effects of
this are FAR FROM TRIVIAL, and linger like a festering wound for those of us who had to experience this. Anonymous doesn’t understand how “fucking dangerous that can be”.
Humour is purely a way of coping with this distress, as AI puts it; humour acts as an adaptive way to process trauma, pain, or everyday struggles without becoming completely overwhelmed. Maybe some of us are retraining our own brains to cope with the adversity this causes.
Humour being subjective, means we can choose not to look/listen when it doesn’t suit our sensibilities. So how does this justify threats by the “anonymous” humour police?
Patients shouldn’t need to subjugate to authoritarianism in medicine. Its profoundly wrong. Authoritarian paternalistic attitudes aren’t reassuring, unless patients yield in good faith. In order to do this, one must believe doctors never make mistakes, which do actually happen according to “anonymous”, in a brief moment of humility.
On the subject of authoritarianism, what’s with the reference to 1930’s Germany (Röhm-Putsch)? Sinister! If “anonymous” really is a clinician, ironically, they have by their own hand portrayed themselves as arrogant and
blinkered, not to mention deeply disturbed. The iteration of the word ‘cosplay’ (I knew I’d seen it before as I had to look it up) is “on brand” for aggressively angry @Anonymous neurologist.
FNDNope is READDRESSING THE BALANCE. The distortions are already out there, on neurosymptoms.org, in the academic literature, uncorrected for bias. Front of house on neurosymptoms.org, the hardware/software analogy still describes purely a “software” issue, in spite of recent fMRI findings pointing to brain “hardware”
changes. There’s a 2009 PDF recommending graded exercise therapy for people with ME/CFS, since NICE guidelines changed in 2021, is no longer relevant and actually harmful for these patients. The FND sales pitch is still entrenched in hard sell psychosomatic.
Thank you FNDNope, for advocating. Authoritarians do eventually get overthrown.