My Lyme Story: Elizabeth Parker

I’d vaguely heard of Lyme Disease before but hadn’t known anyone with it. I knew it was transmitted by ticks and that it was usually characterised by a bull’s eye rash. That, I think, is as much as joe public knows. Unfortunate, as anyone can get it, not get diagnosed accurately or quickly enough for treatment to work and have their lives ruined by this most debilitating of diseases. 

I was 68 when I retired back to my native Scotland in 2020, after teaching in South Devon for many years. I’d dreamt of buying a small cottage in the middle of nowhere, where I could be close to nature, enjoy peace and quiet and walk my Bernese Mountain dog Bonnie amongst beautiful scenery. However, timing wasn’t great as the pandemic was underway. I had to get official permission to drive up to Scotland, as travelling was severely restricted. I decided to rent meantime, as the property market was in turmoil. I secured rental of a picturesque cottage in the Highlands. The scenery was breathtaking and the variety of stunning dog walks endless. I was happy and content with life.  

Scottish Highlands

One morning, four months on, I caught sight of a rash on my abdomen in the mirror. It was on the righthand side and spread out, with two circular main areas. It was red, slightly raised but not itchy. I rang the medical practice, where I had registered, the following morning. I was asked to describe the rash and answer various questions: how long had it been there, any rash anywhere else etc. The GP then told me I almost certainly had shingles and prescribed 3 weeks antiviral medication.

Over the following three weeks the rash spread across my abdomen, I developed headaches, tiredness and aching bones. My wrists and right knee became weak. Being an avid ‘googler’, I researched my symptoms and Lyme disease seemed a possibility so I returned to the GP and requested a test. Very reluctantly they eventually agreed (‘there is no Lyme disease in this area’). The result was positive.

I was prescribed 3 weeks Doxycycline, as per the guidelines. This meant the NHS recommended treatment began at least six weeks from when the rash first appeared, due to me being misdiagnosed as having shingles through that one phone call, being given the incorrect medication, causing the correct diagnosis and treatment to be delayed; causing the Lyme disease to take hold of my body and progressing into having chronic Lyme disease which persists two years later. 

Doxycycline capsules

On returning to see the GP I was met with an almost defiant brick wall. I did NOT have Lyme disease, as I’d had the NHS recommended treatment – 3 weeks Doxycycline. They agreed ‘something might be going on, but it absolutely was NOT Lyme disease’. 

By this time my symptoms had worsened; my right knee was so weak that I had to buy support straps and walk with a stick. I was so weak I had to bring my mattress downstairs as I couldn’t climb up stairs. I had severe pain inside the bones of both wrists but also in hips and legs. Soles of my feet would get burning hot. I had fever-like symptoms and severe fatigue, where I just had to sleep, akin to how you feel when being sedated and asked to count backwards from twenty. You just can’t fight it.  

Zooming forward to the present day, I’ve moved to Edinburgh, my home town, one major reason being that my dog and I would be at less risk from tick bites. So poor Bonnie now has two boring daily walks around the local pavements with the occasional foray into a local green space, if the grass has been cut low enough. We both used to adore our forest rambles, hill walking and wildlife encounters of the past; as so many dog owners, hikers and adventurers do, many completely oblivious to the risk from ticks.  

There are three aspects of Lyme Disease which I’d highlight here.

  • Symptoms can vary in severity and type from person to person. 
  • Lyme is seldom present alone; co-infections are often involved too.
  • Symptoms can come and go, fluctuate in intensity, migrate within the body and new ones appear.

I still have some bone and muscle pain, severe brain fog, lack of energy and motivation, memory issues (now short as well as long term), terrible fatigue (some days I spend around 20 out of 24hrs in bed/asleep), fluctuating heart rate and palpitations, chronic sinus infections with postnasal drip and almost continuous cough, hair thinning and loss and, unsurprisingly, low mood and hopelessness.  

Yes, I’ve had a go at self-help: the well-known herbal protocol, diet changes, fighting hard to eventually get NHS appointments with Infectious Diseases, Rheumatology, Cardiology – only to be eventually told (as so many of us apparently are), that I have Fibromyalgia.  

The latter seems to be the route our medical profession is now taking, to deal with those of us who are presenting with symptoms post 3 weeks Doxycycline treatment. It’s like we’re all being corralled together under this one diagnostic umbrella, which we are being asked to accept has been the cause of all our symptoms for as long as we’ve been suffering. Having been handed the Fibromyalgia booklet, we are dismissed, expected to accept that this is our answer, so there is nowhere else to turn, no further treatment available from the National Health Service of this country.  

Chronic Lyme disease is a hidden epidemic, not recognised, acknowledged, or even accepted as existing by our health professionals. There are thousands suffering from it; family life shattered, jobs lost, relationships destroyed, sanity questioned, savings plundered as we pour money into alternative treatments because the care we should be receiving isn’t there.

I have just read about two legal cases in the USA, being brought by Lyme disease sufferers/their families, one of whom died aged 17, having been told he did not have the disease, then a few weeks later suddenly dropping dead of Lyme Carditis. This latter case was settled before the court hearing, showing that negligence in relation to Lyme Disease is at last being admitted, at least in some countries.  

It’s high time the NHS followed suit, acknowledged the existence of Chronic Lyme disease, started listening to sufferers instead of stonewalling/passing us off as having mental issues and instead started helping us to get better.