Rhiannon’s story

Rhiannon Williams, 46

  • Outdoors enthusiast living in rural East Devon. Regularly pulling ticks off pets and spent time in woodland areas.
  • In 2010, bitten on the back of calf and developed  typical EM rash.
  • Started falling down stairs, developed tendonitis and a classic ACA rash.
  • Feet swelled, went purple and the skin started to peel off. Unable to walk and prescribed steroids. The skin on feet became thin, atrophic, wrinkled and translucent.
  • In 2013, experienced depressive episode, feelings of panic and fluttering sensations in chest. Developed hot flushes and acne which were put down to early menopause. Started having cognitive difficulties with typing.
  • Remained functional despite symptoms but bitten again by a mosquito in 2014. Another EM rash developed that lasted weeks.
  • Flu-like symptoms developed as well as joint swelling (rheumatoid tests negative), eye infections, sinus pressure, blurry eyesight and gritty, scratchy feeling in eyes that never passed. Neuropathy (tingling, prickling, burning, and numbness), tinnitus, dry cough, swollen glands, sound sensitivity, smell sensitivity and twitching. Weakness and foot drop then followed along with balance issues/dizziness, hair loss and memory decline. Then came swallowing problems, nausea, bladder problems, headaches and neck stiffness, constant fatigue and brain fog.
  • Realised Lyme disease could be a possibility. Responded positively to a week of doxycycline for an eye infection in 2015.
  • GP agreed to do a Lyme disease blood test based on the previous EM rashes, which was negative but GP agreed that Lyme is likely.
  • Waiting to see specialist and is currently on a month of clarithromycin.
  • Since 2014 Rhiannon has been unable to work and is in the process of claiming benefits. She can no longer care for her animals, has no social life and has had to quit her Open University courses.
  • She’s in debt due to being out of work for so long and cannot afford private testing.