Carol D Near Exeter, Devon

I noticed a red rash behind my knee in the first week of July 2014. I contacted my GP and made an appointment. The doctor called me back after my appointment was made, discussed my rash and made the decision to reschedule my appointment so that I was seen by the practice nurse.

I went to see the practice nurse who looked at the rash, which was presenting as the classic bulls eye shape that we all know to be a symptom of Lyme Disease. She suggested it might be an allergic reaction and asked me if I’d used a different washing powder. She told me to go away and keep an eye on it.

Two weeks later, I was experiencing agony around the knee, down the calf and up the thigh. I went to see my GP who diagnosed Baker’s Cyst and told me to take nurofen.

Ten days later the pain spread to the groin, back and across the lower abdomen. At night the pain was unbearable and I was unable to sleep.

I called 111 of several occasions because of the pain and was told by the duty doctors to take painkillers.

Another visit to my GP and she prescribed Codeine pain relief.

The Codeine didn’t work and the pain got worse and worse. One call to 111 resulted in an ambulance being called out, only to be sent back by the Ambulance Service, who spoke to me after the 111 advisor had called it out. The Ambulance Service man listened to my list of symptoms and disparagingly said, “Wow, that’s a lot of symptoms. Do you have someone else there that can verify what you’re saying is true?”

Early September and I was a wreck. No sleep. Unbearable pain. Not being taken seriously by my GP or the medical profession I’d been in contact with. I couldn’t work, which was serious as I’m self-employed. Family life suffering as my husband had to completely take over and care for me too.

In the meantime, my mother in law came to stay in August and she noticed a red bulls eye rash on her leg too. She starting experiencing very bad pain and felt exhausted, she described it “like having the worst flu in your life.”

In early September, unable to bear the pain any longer, I insisted on seeing my GP again. She was unavailable and I saw the practice’s duty doctor. He was the first person who really listened to me as I went through all my symptoms from the very beginning. I mentioned that I am a keen gardener, the red rash, the varying symptoms and he was the first person to suggest Lyme Disease. Blood test was taken.

The next day Lyme Disease was confirmed and I was put on Doxycycline immediately. Initially on a 14 day dose, which was extended to 28 days later on.

After one week, the worst of the pain had gone, which was a huge relief.

Gradually I felt better, although I had a huge reaction to the bacteria die off after one week. I’d read about this and it didn’t make me want to come off the antibiotics as I felt I was fighting back the bacteria.

My fear is a relapse, as my GP has stated that after a month of Doxycycline I will be cured. I believe her source of information is outdated, as in May 2014 Public Health England state that relapses have been documented.

My advice for patients and GPs wanting more info about Lyme Disease is to refer to Lyme Disease Action and the Public Health England Pathway to Treatment. I received good support from this recognised Information Source who deal with facts and not theories. They also offer a free e-learning RCGP Training module for GPs.

I have never heard of a disease that causes so much mistrust between both GPs and patients. It is vital that both the GPs and patients work together to tackle this disease that has so many unknowns and uncertain outcomes.

I wish you all the very best if you have caught Lyme Disease. My advice to you is to get informed, liaise with your doctor, take responsibility for your own body and try to alert as many people as you can to the risk of this spreading disease. I have alerted my daughter’s school, as they regularly have outdoor activities, such as orienteering in woods, residentials on Dartmoor, amongst others.

Good luck all.

Lyme Disease Action
Public Health England Suggested Pathway to Treatment

Current Location: Devon
Infected in: Devon