Me and Lyme disease: the short story.

Back in February, I was exhausted, ill and all out of patience. The last GP I had presented my troubles to suggested I seek counselling. She wasn’t even willing to discuss the possibility that something physical was responsible for so many seemingly unrelated issues (from migraines to muscle spasms, and some things you won’t want to read about).

So I took to Google with one of my more embarrassing issues and up popped Lyme disease. My mother had mentioned it earlier in the week so I started reading about it. It was all there. Every single problem I’ve had over the last nine years could be put down to Lyme.

“You’ve not been right since you returned from America that second time.” Mum kept saying, and she was right. One morning, soon after returning from New Hampshire in 2007, I’d woken up feeling like I’d been hit with flu, my face covered in white pustules and a thick oily slime. I was retaining water everywhere and had rashes on my elbows and knees. I felt hideous!

To the GP we went, he’d “never seen anything like it” and had another GP join us, they agreed it was post viral and prescribed me steroids along with some antibiotics. “Are you sure it’s not Lyme disease?” Mum asked. But no, they were ‘sure’.

I wish I had been as Internet savvy as I am now – I could have saved myself. FYI steroids are the worst thing you could take when infected with Lyme because they suppress your immune system.

So what causes Lyme and how do I know I have it for sure?

The bacteria responsible for causing Lyme is called Borrelia. It’s a teeny-tiny and ever so clever spirochete, able to work quickly and camouflage itself to avoid detection.

It is most often passed on to humans through the bite of a tick. You may not see the tick, or even develop the telltale bull’s-eye rash, but you will get sick. And I did. Whilst in New Hampshire, which happens to be home to a high population of deer ticks (infamous Lyme carriers) I had a sudden onset of flu like symptoms with a fever of 103. I slept it off in the nurse’s station and was none the wiser. Insects loved me – I was covered in bites, I had no idea one of them was harbouring a potentially life-threatening bacteria.

Fast forward to February of this year when, knowing full well my GP wouldn’t take me seriously, I ordered a private ELISA test– it came back with a high count of Borrelia antibodies. You don’t get those without being exposed to the bacteria.

I contacted my surgery and had an immediate telephone consultation with a GP who was surprisingly helpful and genuinely interested. He sent me off for an NHS ELISA test and a Western Blot. Three weeks later they returned with the same result.

I was mad that the original GP misdiagnosed me all those years ago, angry at myself for not figuring it out sooner and relieved that I hadn’t been imagining all these problems – I’m not crazy, I’m genuinely sick.

So many things suddenly made sense, the night sweats and terrors I experienced in my mid-twenties, the fatigue I still struggle with on bad days, the IBS, the back problems, the acne!! Even the gluten sensitivity and eyesight problems can be traced back to Lyme. I also have a heap of neurological symptoms which means my nervous system has sustained damage.

So what now?

I eagerly await my appointment with a neurologist, I’m armed to the teeth with Lyme knowledge and determined to rid my body of what I now know is late-stage Lyme disease with possible co-infections (Lyme rarely travels alone). It’s a long road to recovery but one I am more than ready to take.

Amongst all this, I’m actually quite proud of myself for pulling through the best part of a decade against the odds. I’ve had lots of bad days – the kind where showering is an achievement but I’ve also had the best of times, travelling America included.

_________________________________________

Thanks for reading! If you want to know more about Lyme, how you can protect yourself  (yes it does exist in the UK), and what to do if you think you may have it, follow this link to lymediseaseuk.com. I’m also open to conversation!

 

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Author: Rachel

Communications Exec by day, TV show addict by night. Fighting #LymeDisease 24/7. Postgraduate student at Brunel University, writing my way to a Master's degree in Creative Writing.

5 thoughts on “Me and Lyme disease: the short story.”

  1. Thank you for sharing your story! Lyme definitely exists outside of the U.S. (although so far Antarctica is safe, so perhaps we should all move there ). Keep fighting, fellow Lymie!

    Liked by 1 person

  2. I really related when you talked about piecing it all together. In terms of the symptoms you have experienced over the past nine years. Mine was eight after no help at all from the NHS. I like you, would have got to grips with my illness sooner if Lyme was even suggested. I’m just grateful that there is so much information available online. Thanks for sharing your story xx

    Like

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