My Lyme Story: Tara Fielding

My first childhood memory is my mother pulling ticks off me in the bathroom. I can’t remember having a rash.

Brain inflammation. A thick fog descended on my brain. I could not focus on anything being barely able to string a sentence together ….. searching for simple words. Feeling so embarrassed and stupid I simply withdrew from others.

I never switched off just kept pushing combating 72 hours of insomnia for several years sleeping only on the 4th night. This cycle combined with neuropathy in my hands, arms and feet. My knees being so weak I could only crawl upstairs sliding down on my bottom. Suffering migratory muscle and joint pain with my neck stiff and cruel spasms twisting my legs in opposite directions.  Going to an Accident and Emergency Department in desperation only to be seen when the twisting had stopped. Heart palpitations my heart beating out of my chest thinking I was having a heart attack.

I saw three doctors abroad all saying the exact same thing…my problems were psychosomatic. The first ten years were the worst. Not being understood and with no one believing in me. Twenty years of all levels of doctors telling me it was a mental issue.

Being told by the NHS even as recently as 2020 that Lyme was a fake disease only existing in my mind. And with an NHS hospital not even being prepared to look at my privately paid blood test results then losing my NHS blood test and telling me they could offer no treatment for Lyme disease!

After years and years of protocols and clinics I was nearly bankrupt and in danger of losing my mind. But I persevered and found relief and help with complementary and alternative treatments.

Lyme is a horrible disease which affects everyone differently, mimicking other illnesses. My heart goes out to those patients who are unable to afford private treatment and have to rely on the NHS.

While I do appreciate the NHS is so good in so many different ways still to this day there is not one Lyme literate doctor in the NHS qualified to deal with the rapidly increasing number suffering from Lyme disease, instead still all too often stonewalling us as having mental illness. So thank you Lyme Disease UK for enabling us all to share our stories.

If you change the way you look at things the things you look at can change.