"Misdiagnosis"

I have never had a bad experience with the NHS until the last twelve months.

Early in January 2022 my descent into hell began with what seemed to be an attack of acute diverticulitis. This lead to my first referral to a gastroenterologist, for which I had to stay in a hotel room for a week. No fault of the NHS; I live on an Island with a single GP, which necessitates a trip to my nearest mainland hospital for specialist consults. This was extended due to ferry cancellations.

They spent less than five minutes with me and didn't seem to notice I was trembling violently. I thought this to be some manifestation of Diverticular disease, along with debilitating fatigue, nausea, severe constipation, abdominal pain and intense bloating I was having. I was also diagnosed with IBS. The only advice I left with was eat more fibre. As a vegetarian of 35 years who eats nothing but, it's kind of ironic.

These symptoms persisted and new ones materialised. I found them difficult to articulate. I felt systemically fatigued. Sometimes I felt an internal rush sensation resembling a panic attack, then sudden intense fear. I had episodes which came on in wave like form rising up inside with rapid heart rate, intense sweating, violent shaking and then overwhelming fatigue. Just breathing felt like an effort and my mind would shut down for a while. I had manic muscle twitching especially in my lower back and legs, also buzzing sensations; spine and pelvic region, hot/cold burning, transient numbness; one side of my body one day, with maybe a single limb or even my tongue the next. I had flu like aches in my joints, drenching night sweats followed by teeth chattering shivering.

Over the next five months I lost 5 kilos and was referred back to GE, eventually getting a colonoscopy. I had numerous other investigations, thanks to my incredible GP who realised something other than bowel issues afoot. None of them showed anything pathological. No one could understand.

I was urgently referred on multiple occasions to A&E. Initially for possible bowel obstruction (on a remote Island, not a good situation). None was found.

Eventually I started experiencing mobility issues; I could no longer walk more than a few metres without feeling like collapsing. There was a profound weakness in my lower back and hips/legs.

I ended up back in A&E Lorne & Islands hospital, where the on-call Doctor seemed uninterested. When I tried to describe the multitude of symptoms, and the weird altered sense of perception I'd recently had they said I may never find out what's causing my symptoms and I may have to manage them with medication. They didn't even examine me. Well, this would certainly be true if all doctors took his approach. I left feeling thoroughly distressed, depressed and stripped of hope. 

Next I was admitted to Paisley RAH under orthopaedics (first ever hospital admission in my 53 years). The nurses were great as was the cleaner, and the pharmacist. They made me feel human. I was lucky to have an MRI which showed 'nil acute', and as I was told by an Orthopaedist there was nothing to explain my symptoms. Neurologically, nothing stood out.

None-the-less, my legs didn't agree and still refused to work. So home for a few days....then back to Paisley RAH, to the Medical Assessment Unit, where I arrived at 1 am after a gruelling 6 hour journey. I had a cold sleepless night on a gurney, listening to some drunk exposing himself to the nurses (unbelievable what they have to put up with). I was moved to a ward the following morning, where eventually I was seen by a Doctor. I was questioned and boxes were ticked. 'Have I had any insect bites lately?' was the one that stood to mind. I said I'd had a tick bite years ago and even had the Bull's eye rash. 

At the time (2011) I had tested negative for Lyme and never treated. As tests are assumed accurate, it never occurred to me I could have Lyme. Nor did it to any of the numerous Doctors I'd seen. 

How are these red flags still being missed?

I know they ignored the tick bite as they diagnosed me with Fibromyalgia. 'They said that I had been there recently and asked what that worried me most at the moment? I wondered what it was about my having trouble walking that the Consultant Professor couldn't empathise with. Then they expressed surprise that orthopaedics the previous week hadn't informed me. I felt a time waster.

I'd had a growing feeling as time advanced, most every clinician I saw began to doubt my authenticity, and a preformed bias towards 'malingerer' had gradually developed. I've lost count of the times I was asked if everything is alright at home. I felt judged (in addition to debilitated).

It turned out it really was all in my head, evidently not in the way clinicians suspected. Fibromyalgia is meant to be a diagnosis of exclusion. Not everything had been. When I investigated Lyme, behold I had every symptom of Lyme Neuroborreliosis bar incontinence (thankfully). Despite ultimately testing negative with ELISA (again) and Western Blot, I have since been treated with Doxycycline as per the NICE guidelines. Extraordinarily lucky for me I have such an open minded and competent GP (and huge thanks to a Consultant GP based in Fort William). I'm gradually improving and can function again.

How many other middle aged women with 'Fibromyalgia' slip through the cracks and are never treated? It's an institutionalised travesty! Why is this still happening in a Lyme endemic area with an emerging dangerous crypto zoonosis? So much NHS support for Fibro, nothing for Lyme; we are cast adrift. I don't believe my case can be rare. There must be a hidden epidemic out there. Time to deal with entrenched Lyme ignorance/ misconceptions, and educate regarding testing fallibility. Where ticks are, Lyme is without question.