Arlene’s story- Fighting against Lyme disease
"We call Lyme disease the great imitator, because it mimics a lot of other diseases. It’s hard to diagnose, and even harder to treat."
“My son went off to Aberdeen University aged 18. After 3 weeks he couldn’t get out of bed. He just couldn’t move; there was fatigue, exhaustion, muscle twitching, light sensitivity, noise sensitivity, headaches, sweats, even panic attacks.
We were baffled -then I remembered he removed an embedded tick during his Duke of Edinburgh award a couple of years before. This illness had all the signs of Lyme disease. Had it flared up after moving away and late night partying at university?
His health continued to get worse, and he was devastated to leave university at Christmas and come home.
His GP tested for Lyme disease, but it came back negative. We all believed the test. After that, we spent three years going down the psychiatry route whilst he continued to get worse. I felt in my gut that it wasn’t right, that it wasn’t something psychologically wrong with him. By then, he didn’t even have the energy to walk across the hallway to the bathroom. All his meals had to be brought to him on a tray. Three years later his psychologist said “I agree with you, I think this is a physiological problem”. I knew it was Lyme disease.
We call Lyme disease “The New Great Imitator” because it mimics a lot of other diseases. If not caught early, it’s hard to diagnose, and even harder to treat.
We couldn’t get the treatment he needed on the NHS, and so made the decision to go private. We were lucky to be in the position to do so. He was tested at a clinic in London and diagnosed then treated for Lyme disease plus other tick-borne infections. Since then, he’s had intensive treatment for infections, to support his immune system, and reduce the inflammation caused. His condition has improved, but the one symptom he can’t kick is the extreme fatigue.
We still care for him, he’s housebound, but not bedbound anymore. It’s like his batteries fade within the first ten minutes of the day, and then he has nothing left. He doesn’t see things getting better. I’m the eternal optimist, I believe we can still find ways to improve his life. I tell him that we will always fight for his recovery from Lyme disease, even if he doesn’t have the energy to do it himself.”
Find out more information about persistent Lyme disease on the Lyme Resource Centre website (this link will take you away from our website).
For more information and support for living with an antibiotic resistant infections look on the Antibiotic Research UK website (this link will take you away from our website).
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