Patient story Misdiagnosis
ANTIBIOTICS CURED ME OF FND !
31 May 2026 Author profile image mel Convalescent
9
I'm a hypochondriac......the conclusion of neurology after fruitless investigation into why I'd lost my peripheral vision and was experiencing alarming neurological symptoms. These could have been taken from the neurosymptoms.org list.

A SHORT HISTORY OF SYMPTOMS
Early 2022; two hospitalisations, multiple trips to A&E, and medical investigations. I had unexpectedly passed blood. Suddenly I was housebound with crushing fatigue, abdominal bloating, constipation, no appetite and rapid weight loss, paraesthesia’s, muscle twitches, disabling leg weakness, violent body tremor, overnight drenching sweats with rigor chills, burning nausea, phantom musty odour (phantosmia)....and countless more sensory oddities.

I had seizure like episodes: I felt I might be dying; rollercoaster sensation, palpitations, cold sweat, ringing ears, brain freeze, staring into space; nothing went in, no words came out. Returning from the trance; a groggy headache, intractable exhaustion unlike anything I'd ever felt, no energy to inhale. (I know healthy exhaustion, I used to fell-run.) It took hours to regain lucidity.

I believed doctors would work out what was wrong with me. They didn’t seem too concerned as nothing considered significant was found. My mystery illness attributed to; diverticulitis, IBS, fibromyalgia, and osteoarthritis. My account of symptoms too subjective to entertain, I was discharged with FND, and told I had to live with it. I was baffled by this.

Based on clinical symptoms and confirmed history of tick exposure, in late summer 2022, my GP suspected Lyme disease (LD) and administered oral antibiotics for the standard 21 days. I significantly improved, though remained symptomatic.

FND; THE OVERLORD
First referral to neurology (Feb 2024); I had lumbar puncture and brain MRI, to explore my peripheral vision loss, detected a year earlier during 'Specsavers' eye exam. I was negative for MS, and it transpired I had “mild atrophy” of my left optic nerve.

At follow up, I couldn’t understand the neurologist’s fixation with headaches. My permanent sight loss seemed insignificant. “We’ll get to that later” the consultant said, continuing with the migraine obsession.

Optic nerve damage was a “static, non-progressive insult” of “no clear cause’’, unrelated to other symptoms of “migraine” and “cervicogenic headaches”. Whilst headaches were part of my symptoms, I was perplexed, as I’ve never seen my GP with, or ever complained of, migraine pain.

I mentioned I improved after antibiotics: “We don’t diagnose disease based on treatment response’’. OK, but why ignore evidence of bacterial infection? The possibility I had, or could ever have had, LD rebuked, based solely on negative tests. To my horror, I was “hypervigilant of my transient symptoms’’ reflecting an “increased awareness of normal phenomena, which then becomes a self-perpetuating attention driven condition.” Why didn’t they just say I’m a hypochondriac?

The power imbalance in doctor-patient relations impressed on me I was being gaslit. Neurologist; “I’ve seen patients with Lyme disease” (clearly, I didn’t fit their profile); “You must trust me” (instant red flag, so not likely). With CBT recommended, I was handed a slip of paper with popular FND help site, neurosymptoms.org. Being female (as 70% of FND diagnoses are), clearly, I fit this profile better. My instinct? I was being coerced into a false narrative.

  • THE THING ABOUT LD TESTING - A NEGATIVE TEST DOES NOT RULE OUT LYME DISEASE
    LD, notoriously difficult to detect, with standard two-tier antigen testing, relies on detectable host immune response. Low sensitivity and high specificity, means its unreliable, particularly in early and late disease (higher number of false negatives than false positives). Used for 42 years, some helpful biomarkers were removed when a vaccine was developed in the 1990s. (Later shelved, the markers were never reinstated.)

    When the first tier ELISA test is positive, confirmation comes from the second tier (western blot) also needs to be positive to rule in LD. If one is negative and the other not, the outcome is still negative. These strict criteria intended for consistency in epidemiological surveillance, not with patient care in mind.

    These are some reasons why indirect methodology testing is flawed, but essentially, A NEGATIVE TEST DOES NOT RULE OUT LYME DISEASE. Clinical diagnosis can be made by a health care professional without a positive test.

It’s a pity for me then, neurology chose to overlook this technicality, even if it is written into NICE guidelines: https://www.nice.org.uk/guidance/ng95/chapter/recommendations (1.2.12) They were adamant I couldn’t have LD.

THE REAL REASON FOR MY 'FND' SYMPTOMS?
In summer 2011, I was bitten by a tick. I had pathognomonic expanding red rash, Erythema migrans, the FIRST SYMPTOM of infection. It even developed a central clearing, the classic, though non ubiquitous, bullseye. The red is an inflammatory response to localised infection in the skin, radiating out from the point of entry via the tick. (Rashes vary in appearance and some infections don’t result in rash) Easy to treat at this stage, it fades slowly as it disseminates. The immune system may deal with it successfully, or with an unlucky dip of multiple infections from a single bite, it may not.

  • LD; THE POLITICAL DISEASE
    LD, from the tick transmitted bacteria Borrelia burgdorferi, is highly contested as a chronic infection, misunderstood, oversimplified, even flatly denied, and poorly researched. Ticks are known carriers of multiple organisms, capable of causing disease in humans and animals (Dogs get chronic LD! People don’t?). Pathogens transmit and multiply at different rates, complicating symptomology. They respond to different treatments. LD, being subject to a great deal of online misinformation and obfuscation, mostly flies under the radar, even in tick infested Scotland, where I live. Here’s an astroturfing site entirely dedicated to LD misinformation: lymescience.org

    Babesia infection, is rarely if ever tested for in the UK, usually found in very sick patients by coincidence. Transmitted only by tick, or infected donor blood/organs, it’s well known to vets as the cause of ‘red water fever’ in cattle. In the USA its screened for in donors, being as common as Borrelia in ticks in some areas. https://www.cdc.gov/dpdx/babesiosis/index.html
Here, reality deviated from medical expectation for me. My first LD test was negative. Naturally I assumed I was clean. Or it may have been too early for sufficient antibodies to develop, and later retesting whilst recommended, didn’t happen for me. My rash wasn't treated (for twelve years).

Acute disease onset is the expectation. I felt fine, for a few weeks. When symptoms materialised, they were hidden behind new hypothyroidism and apparent early menopause. Soon, I became unusually tired, clinically depressed, I ached, sweated relentlessly. This began to seem normal, as any female in their early forties would expect from hormonal change. Hypothyroidism causes fatigue, menopause the sweats. So, connection to an untreated tick bite with negative LD test was missed.

  • NEUROLOGICAL LYME DISEASE (LNB)
    Neurological symptoms of LD might be dismissed by conventional medicine as it follows American disease paradigms; strains of Borrelia common in Europe are neurotropic, and can present with severe neurological manifestations, whereas the strain common in the USA affects mostly large joints with inflammatory arthritis. The neurological version, Lyme neuroborreliosis (LNB), when left untreated, invades the CNS driving chronic inflammation, and rare late complications such as optic nerve gliosis, the sequela I ended up with. Here’s quite an old paper, but a good general overview: https://pmc.ncbi.nlm.nih.gov/articles/PMC7051319/#sec10

In my case, this was likely LD in action; the vague, non-specific symptoms of the ‘new great imitator', so called because of parallels with syphilis, another infection from spirochaetal bacteria with the ability to mimic other diseases. Parallels don’t end there; syphilis was known as ‘general paresis of the insane’, before its causative agent was found. An example of treatable, organic mental illness, once considered purely psychiatric.

MY MISFORTUNE
I had a tick bite. I had an untreated rash. I tested negative. In the UK, only patients testing positive by NHS approved labs qualify. I couldn’t access additional NHS treatment, or any support from them, and with all further investigation stalled by my FND diagnosis (FEnD?), I had no alternative but to source and fund appropriate therapy privately. Or accept FND and continue suffering, as one of the “14%” who get worse, or one of the “less than 5%” with a “not correct” FND diagnosis. (ref. from neurosymptoms.org)

MORE EVIDENCE I HAD CHRONIC TICK-BORNE INFECTION
Private testing in Europe (Dualdur) by AI augmented dark field microscopy (DFM) using direct methodology, confirmed not only had I been infected with Borrelia (result; immunocomplex positive), but was positive for malaria-like parasite, Babesia, and Bartonella, fastidious bacteria responsible for ‘cat scratch fever’. Treatment is different than for Lyme, arguably why I still had lingering symptoms. Or, I could have been suffering ‘post treatment Lyme disease syndrome’ (PTLDS), the agreed terminology for symptoms after antibiotics. I was borderline negative for Borrelia after further private treatment, a result congruous with my continuing improvement.

I was seronegative for LD; sequestration of antibodies into immunocomplexes render them unavailable for detection by standard antigen tests. I’m sure of this; I opted for a western blot from the same blood sample analysed by DFM. It was negative for LD, a clear demonstration of how one method picked up evidence of genuine infection the standard method missed.

According to my records, I still have FND. In reality, I had complex symptoms from multi tick-borne infections which, for some reason, conventional medicine is unable to decipher. My senescing immune system, overburdened as I aged into my fifties, when Babesia in particular, becomes a significant risk factor for haemolytic anaemia. Another question raised in my medical notes; within months of my tick rash, I had assumed Gilberts syndrome. I’m no doctor, but could babesiosis be responsible for elevated levels of blood bilirubin?

LD is a treatable cause of optic neuropathy. I have permanent vision loss now which has deteriorated since neurologists described it as “static”. I don’t blame them for this, I simply reject they wrote me off as a hypochondriac, and abandoned me to FND. There is a systemic problem here.

Much literature floods online spaces about detrimental effects of unnecessary treatment for FND patients. I see little describing the dangers of delayed treatment for conditions hijacked as FND.

BEWARE; THE DISTURBING CONFLATION OF FND WITH TREATABLE MEDICAL CONDITIONS
My experience with neurologists was a facsimile of a vignette used in clinical training, to ‘enhance diagnostic acceptance’ of FND (see VIGNETTE 1. FOLLOW-UP VISIT IN A PATIENT NOT ACCEPTING THE DIAGNOSIS: FACILITATING SELF-EFFICACY) https://pmc.ncbi.nlm.nih.gov/articles/PMC6372294/

The dangerous contradiction, is if according to NICE a negative test does not rule out LD, why then is training advice to dissuade the patient of this alleged ‘belief’?

In my case, comorbidities compatible with FND (such as ‘IBS’, ‘fibromyalgia’, ‘migraine’) were cherry picked, even conjured up and used to support my FND diagnosis. The cart was put before the horse.

I’m one of the lucky ones. I became my own medical detective; my ‘FND’ symptoms (and associated co-morbidities) were cured after targeted antibiotic therapy from an infectious disease expert. My ‘illness belief’, was illness fact, driven biologically. Intentional or not, I was medically gaslit.

The conflation of chronic/late LNB with FND symptoms is alarming. One of the few defining characteristics of LD are fluctuating symptoms that shift around the body. I can’t see any distinction made between them, and the symptoms described in neurosymptoms.org. How can FND, manufactured from a patriarchal Freudian concept, be clinically differentiated from LNB, an infection transmitted by ticks? Given medical over reliance on LD testing and its obvious limitations, is it any wonder FND is cited the second most common reason for new neurology referrals? Is it coincidence Scotland, swarming with ticks, has significantly higher global prevalence of neurological disorders?

Interesting, I can’t find any mention of LD in neurosymptoms.org. Enter a search for ‘Lyme’, there are zero results. Yet there is emphatic insistence all kinds of infection are one of the strongest risk factors for FND. (Search ‘infection’, find eleven results!) Surprising, considering strong overlap of symptoms.

FND seems to be a confusing melting pot for the medically unexplained promoting an Illusory truth effect and selling the false dichotomy of, that which isn’t proven organic must be psychiatric.

Ironic, any mental trauma I suffered was from not being listened to, gaslit and exposed to the lunacy of self-validating circular reasoning. I avoid seeing doctors; I feel insecure of my own credibility now. I’m unwilling to confide in them, especially anything to do with LD. My new health anxiety, is not out of fear for myself, but the misplacement of my trust in doctors worshipping at the altar of FND.

Since chronic LD isn’t recognised (not at least in humans), the particular DSM-5 doctrine for diagnosing FND when: ‘clinical findings can provide evidence of incompatibility between the symptom and recognized neurological or medical conditions’ (Ref. from DSM-5TR) is inherently deleterious for Lyme patients. https://www.ncbi.nlm.nih.gov/books/NBK551567/ How many treatable sufferers are erroneously trapped in this paradox loop? When its FND, it will always be FND.

The odds are stacked against detecting tick-borne disease as an organic root cause of FND-like symptoms. Had I trusted neurology over my own intuition, I’m not confident I’d still be here. No amount of psychotherapy, ‘brain retraining’, or faith healing would have returned my quality of life, my health, or stopped my eyesight failing. It’s a tragedy many may never even have the chance.