"Chronic Lyme vs. FND?"

2011, tick bite, first symptom-rash, left untreated=chronic disease

In 2022, after a clinical diagnosis of LNB from my GP and 21 days Doxy therapy, I was referred to neurology and ophthalmology, after a change in my vision in Jan 2023. An optician's eye exam/OCT found I’d lost my left eye peripheral vision from Optic neuropathy (ON), and a gliotic optic disc (evidence of chronic inflammation/raised ICP?).

After twelve months' wait, neurology at QEUH Glasgow agreed to investigate with Lumbar puncture and brain MRI. I was distressed from being repeatedly dismissed. The doctor, aware of how I felt, was careful to put me at ease. I still had transient symptoms and felt I was regressing after NHS antibiotics eighteen months previously.

I was tested for MS and again, LD. The ward staff and doctors were brilliant. The doctor performing the LP, exceptionally careful.

Both tests were negative.

At follow up, was allocated considerable time with consultant neurologist, which I appreciate. I couldn’t understand why they focused on headaches. I was there because I’d lost some eye sight. We’ll get to that later, they said, continuing with the migraine inquisition.

Answers didn’t materialise, I was told my optic nerve damage was a static, non-progressive insult of no clear cause. I've no record, or ever complained of, migraine pain! Objective clinical evidence of ocular LD was suppressed.

In response to improvement after antibiotics, I was told they don’t diagnose disease based on treatment response. NICE (section 1.3.8) contradicts -Consider clinical review during or after treatment for LD to assess for possible side effects and response to treatment. Empirical evidence of bacterial infection was excluded.

The apparent power imbalance in doctor/patient relations gave me the impression I was being medically gaslit. I’ve seen patients with LD, said the neurologist but clearly, I didn’t fit their profile. I was told - You must trust me (instant red flag).

I was recommended CBT and to view FND-help website. Another red flag;  NHS normally doesn't endorse (LD) websites! neurosymptoms.org just raised  more questions. I felt coerced to accept a false narrative. The possibility that I had, or could ever have had, LD was denied. Remarkably, I was diagnosed with FND.

To my horror, neurology concluded I was hypervigilant of my transient symptoms, reflecting an increased awareness of normal phenomena which then becomes a self-perpetuating attention driven condition. To them I was a hypochondriac making myself ill. As this was before the LP and brain MRI, how could they determine this, pre results? And when did neurologists become psychiatrists?

My confidence in NHS doctors flatlined, I left. I wrote the neurologist my reasonings but never received reply, nor acknowledgement. To the neurologist’s credit, they did consult Raigmore with my concerns. Raigmore were also dismissive, stating - the fact this patient has remained seronegative throughout……. would certainly indicate there is no serological evidence of infection with B. burgdorferi.’

No alternative then, but to part company with NHS, seeking help from private sector at great expense. In March 2024, I was re diagnosed clinically with LD (it’s in your brain’) by a private Infectious Disease consultant and ultimately improved again after targeted antibiotic therapy. (Best decision ever).

July 2025: costly private testing at an EU accredited lab, using EU certified procedures, AI augmented Dark Field Microscopy (Dualdur) found me:

Bartonella and Babesia, positive (in RBCs)

Borrelia, borderline negative; spirochaetal fragments present

Borrelia immunocomplex, positive; confirmed immune reaction to Lyme infection

Western blot, negative for Lyme: to mirror Raigmore's no serological evidence (& contrary to visual evidence). False negative results never considered; antigen test proved useless.

After lengthy self-funded private treatment for all three B's, I’m much improved,  no longer suffering from debilitating functional symptoms, 95% return of quality of life. I'll never recover my eyesight and have an annoying blind spot causing me to trip over anything in it. Doesn't matter; I can function.

My ongoing symptoms persisted, as malaria-like parasite Babesia doesn't respond to Lyme treatment (causes headache, nausea, night sweats/chills/haemolysis). I had complex, shifting, non-specific symptoms, lacking objective clinical findings; either overlooked or taken in isolation/out of context.

NHS's LD symptoms list is over simplified. West Scotland and European Borrelia strain is neurotropic (LNB), with less arthritic joint involvement than disease from US strain (See study; Emergence of Lyme Disease on Treeless Islands, Scotland). Bartonella is also neurotropic. All three together are synergistic, overwhelming immune response = complex chronic infection.

Within months of tick bite, I had elevated bilirubin (suggested haemolysis/Gilbert’s syndrome) and ever since (hopefully gone now). In retrospect, Babesia?

Being dismissed and gaslit while having tangible, medically explicable symptoms invalidated as somatic, caused great emotional harm. I still can't force myself to see GP, for fear of dismissal; FND overshadows.

The NHS ophthalmologist was open minded, taking me seriously when follow up tests indicated further vision loss. They acknowledge ON is a known, rarely observed complication of untreated chronic LD. 

FND dominates. Frustratingly, I won’t be on record as genuine Lyme patient (no positive NHS test). Problematically, confirmation bias's likely why I wasn't taken seriously. My trust has gone.

Not accepting tick-borne infection (TBI) from private tests, how do I access appropriate NHS treatment, monitoring and care? Acceptance seems wise, as potentially deadly Babesia is transmissible through donated blood and tissue (screened for in US); I ought to opt out from the donor register ? I’ve no desire to be responsible for harming vulnerable patients.

The difficulty psychologising complex medically unexplained symptoms under FND is, it detracts focus away from potentially treatable organic disease, endangering patients, paradoxically generating avoidable mental and emotional distress. FND stigma self-perpetuates . Beware FND symptom conflation with neuro-Lyme!

Antibiotics cured my FND ! But FND isn’t cured by Abx, therefore, only rational conclusion is - I was mis-diagnosed (again). FND shouldn't be an excuse to stop looking for disease. 

I need to nullify the fake FND diagnosis from my hospital records and get acceptance that my TBIs were the real, organic cause of my symptoms. But how?