The desperate need for an accurate Lyme disease test

1607078449009Stephen Bullough before and after Lyme disease

Rosie Milsom

Fundraising & Comms Manager | Helping charities to diversify and increase their income, engage with their supporters, and make a difference

Yesterday, as part of our Big Give Christmas Challenge, we got a very strong reaction and boost to the campaign when we shared the story of Stephen Bullough. I’d like to share that with you now, and the best way is within an article because it’s too long to fit into a LinkedIn post.

His story helps demonstrate the importance of having an accurate test available on the NHS – and a better understanding of the disease from the medical profession.

An 8th Dan in karate and World, European and British champion, Stephen fell ill 2016 after recalling rash in 2015. He had neurological symptoms including seizures, and later vision problems.

He saw several consultants, but no one joined up the dots between the symptoms, and he was diagnosed with Functional Neurological Disorder (FND).

Feeling failed by the NHS, Stephen’s wife Angela began doing her own research and sent his bloods to a lab in Europe, which showed positive for Lyme. Tests done on the NHS had returned as negative.

The positive test was dismissed by Stephen’s neurologist, who said not wanting to believe he had FND was another symptom of the illness.

In 2018, Stephen suffered a series of seizures that resulted in him losing his sight and use of his legs. Still, he got no treatment.

He was certified as blind by a top local ophthalmologist, but again his neurology consultants didn’t accept this as true.

On Father’s Day this year, Stephen was blue lighted to hospital with a Glasgow Coma Scale 3 after series of back to back seizures. He was referred to ICU, but once in ward a doctor refused to treat him, saying that his medical notes suggested the seizures were fake. Luckily, a nurse’s son had epilepsy. She recognised the seizures and subsequently reported the doctor.

Stephen now has severe issues with his heart and nervous system, and is unlikely to ever walk again. He needs round the clock care.

After a recent stay in hospital, a community response doctor was sent to visit Stephen at his home. He happened to be a member of Global Lyme Alliance and listened to Angela’s story in shock.

He consequently carried out a thorough examination, confirming that Stephen has late stage Lyme with secondary and extensive damage to the central nervous system.

He is now on extensive medication and vitamins to help manage his condition.

Angela says:

“To say we’ve been living through four years of hell is an understatement.  If there was a more accurate test on the NHS, we could have gotten Stephen diagnosed and treated more quickly. Now, our lives have been devastated by this illness, and the stress has impacted my health too.”

At the time of writing this, we’re just £138 away from our Big Give Christmas Challenge target. Funds raised are going towards our Innovation Fund for Lyme disease, which will see us give grants to research projects which aim to find a truly accurate test and effective treatments for Lyme disease.

The campaign is accepting donations until Tuesday 8th December at 12pm, but will only be doubled up to £6,000. If you’re moved to support us, please donate via the link below, or get in touch with me if you’d like to talk about other opportunities for support after this time.

Thank you



While COVID testing is purposely designed to show mostly ALL positives, Lyme/MSIDS testing is designed to show nearly ALL negatives:

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