My Lyme Story: Isabel de la Cour
Isabel de la Cour describes her battle with late Lyme disease and the difficulties she experienced in gaining the correct diagnosis and treatment.
Early Lyme symptoms and misdiagnosis
I first became unwell in January 2016. I woke up fit, well, and healthy but by mid-morning my left ear started feeling funny, like a train was going through my head. All noise became distorted and amplified, like the loudest possible sound from a nightclub’s PA system.
The diagnosis was Sudden Onset Hearing Loss caused by an unknown virus. I was prescribed steroids and anti-viral medication. They didn’t work. Over the next fortnight I got a severe fever, a rash all over my body, vertigo, and crippling tinnitus. Hearing tests found partial hearing loss in my left ear.
“The inner ear does this,” doctors repeatedly said. “It will take a long time to heal. Be patient.” The sound sensitivity, tinnitus, and apparent post-viral fatigue made it impossible to leave the house. I worked for local government and, long before remote working was the norm, I reduced my hours and worked solely from home. Eighteen months later I quit my job as I wasn’t coping.
A global search for answers
Sudden Onset Hearing Loss never made sense to me so I went on a long healing journey trying to find answers. Against all odds, I travelled to Hawaii, Australia, India, and Spain. I tried everything: homeopathy, cranial osteopathy, acupuncture, Ayurveda, biomagnetism, and Tibetan healing to name but a few.
My original symptoms improved; the fact that I lived in India for a year, one of the noisiest countries on the planet, is testament to the human body’s amazing ability to heal. However new symptoms kept emerging. It was incredibly confusing. On one hand I was getting better, on the other I was getting sicker. Delhi Belly did not help matters. The word ‘fatigue’ does not do justice to what I experienced. It was closer to a total physical and mental shutdown, too weak to even blink.
COVID-19 reactivates symptoms
Living back in London, lockdown’s remote working and the slower pace of life enabled me to get another full-time local government job. It was a relief to pay off some debts. I was mostly healthy but constantly struggled with fatigue, digestive issues, food intolerances, and hair loss.
All hospital tests came back ‘within normal range’ but I knew something was deeply wrong with my body. Other issues kept popping up which I explained away. I told myself the arthritis-type pains and musculoskeletal problems was RSI from using a laptop from the kitchen table. Burning hot feet was understandable during the hottest summer on record. I kept a bucket of iced water in the living room to cool them down.
Two bouts of COVID-19 made all the old symptoms return with vengeance. Something had been reactivated within me. I was referred to a long COVID clinic but there was nothing they could do. I went from having a well paid job to using food banks and bouncing around the gig economy. For the next few years I spent the majority of my time lying motionless in my cold, dark bedroom.
Diagnosing Lyme disease
In 2024, jobless and desperate, I retrained as an alternative health practitioner.
My training prompted me to consider whether bacteria could be causing my symptoms. Blood tests from an overseas lab specialising in tick-borne diseases gave a positive result. Borrelia burgdorferi, which causes Lyme disease, and co-infections were apparently in my blood.
A private functional medicine doctor, experienced in Lyme disease, asked me to complete a symptom survey to help confirm the diagnosis. It included questions on burning hot feet and arthritis-like joint pain.
“A score over 50 means you are likely to have a tick-borne disease,” the functional medical doctor said. “You scored 161.” I was gobsmacked! It turns out those mysterious symptoms I had in lockdown were telltale signs. I had Lyme disease. I didn’t know I’d been bitten by a tick. After nearly 10 years I finally had the answers. All my symptoms now made sense.
Treating Lyme disease
I naively thought I could be treated with antibiotics however I quickly learnt there was no easy, quick, or cheap option for a ten year infection. My GP was supportive, but his hands were tied by a system not designed for treating a multi-systemic and multi-pathogenic illness. I was flabbergasted at the price of private doctors. One was charging £800 for an hour’s consultation with medication on top. Having hardly worked in ten years it wasn’t an option.
After months weighing up options I decided, at least for the time being, to focus on a holistic approach.
Recovering from Lyme disease
A year into treating Lyme disease and there have been so many improvements. I’ve even started working part-time as an alternative health practitioner but I can only manage a very small caseload. Sharing everything I’ve learnt about healing and helping others regain their health is incredibly rewarding.
I still have a long way to go. I had a lot of co-infections from the tick bite. Living in India with a compromised immune system, a by-product of undiagnosed Lyme, complicated matters as I had many tropical pathogens (mosquito bites, parasites from food etc). The trauma from the last ten years has also exacerbated symptoms. Considering how unwell I’ve been, I am very happy with the progress I’ve made so far.
Understanding the risk of tick-borne disease
In 2018 I looked into Lyme disease but the websites I read focused on acute Lyme which didn’t match my symptoms or experiences. I didn’t see anything about Lyme causing hearing loss or cripplingly loud tinnitus. I hadn’t been exposed to ticks immediately before becoming unwell; I am a true urbanite, rarely going to the countryside. I’ve never noticed having a bull’s-eye rash. I’ve since learnt none of this matters.
- Lyme disease can be dormant in your body for decades. It can activate when the immune system is weakened, e.g. from an illness like COVID-19 or stress, as happened to me in January 2016 when I was in a difficult situation at work.
- You can get a tick bite anywhere, from gardens and urban parks to country-walks and holidays. I suspect I got a tick bite on holiday a few years before becoming unwell.
- Ticks can be the size of a grain of rice or poppy seed. They are easily missed.
- Not everyone gets the bull’s-eye rash associated with Lyme disease.
- There are also other rashes depending on the bacteria that the tick carries
- Stretch mark-style rash (caused by Bartonella bacteria)
- Speckled, pinpoint red marks often on the body’s trunk and extremities (caused by Ehrlichia and Rocky Mountain Spotted Fever (RMSF) bacteria). This is identical to the one I had in 2016. RMSF also causes hearing loss but fortunately is not considered endemic in the UK.
- Blood tests are unreliable – false negatives are common.
- Symptoms can be used for diagnosis. There are specially designed online symptom surveys such as Dr Horowitz’s questionnaire (https://projectlyme.org/msids-questionnaire/).
- There are over a hundred possible symptoms with varying severity between patients. This is because ticks carry lots of different pathogens (known as co-infections). Each person’s symptoms will differ depending on the co-infections they receive via their tick bite.
(C) Lyme Borreliosis Foundation
