In 1971 whilst working in Wimbledon I visited a woman in order to interview her. I was shown into her living room and was surprised to find a bed in there, in which was her daughter aged about 11. The mother explained that she had Juvenile Arthritis and suffered from so much chronic pain, having arthritis in most of her joints, that she was bed ridden. I was shocked and it made a lasting impression on me. I learnt at that time that Juvenile Arthritis was very rare.
It was in the 1970's that Polly Murray was collecting data on children in her locality in Lyme, Connecticut that had been diagnosed with Juvenile Rheumatoid Arthritis. She knew that Juvenile Rheumatoid Arthritis was exceedingly rare and yet there were several cases in her neighbourhood, in her street in fact. Her investigations led to the recognition of what is now known as Lyme Disease. It was some years later in the early 1980's that Willy Burgdorfer recognised that Lyme Disease was a bacterial infection and he identified the spirochete, the infection was named after him Borrelia Burgdorferi.
During the 1970's Dr Charles Ray Jones Hamden USA found that children presenting with Juvenile Rheumatoid Arthritis also had other symptoms not like the classic cases he'd learnt at med school, he found they responded to antibiotic treatment, sometimes long courses. In time Dr Jones has become known as the Pope of the Lyme World treating many thousands of children the World over. He was the only Paediatric Lyme Doctor until recently.
In the UK some old statistics I came across state 1 in a 1,000 children have Juvenile Arthritis which adds up to 12,000 children under 16. I understand talking to a doctor recently that that figure is increasing so much that special clinics are now being introduced. Reading through Arthritis websites my heart sank reading that Juvenile Arthritis cases can start so similar to my experience with Lyme disease, illness, rashes, weakness, swollen glands and then migrating arthritis which can fluctuate and go into remission only to flare up again.
Lyme Disease is considered by some to be rare in the UK. The various Arthritis websites I have looked at rarely even mention it and yet it was documented as being around in Europe since the end of the Ice Age and doctors recorded it as far back as the 1880's.
If doctors don't look they won't find. One mother I heard of recently, her doctor had refused a test for Lyme Disease for her child, who had Juvenile Rheumatoid Arthritis. Where is the logic in that? Of course research shows that blood tests can miss up to 50% of cases of Lyme disease but surely our doctors still test or do they?
The pain I suffered with Arthritis was unimaginable, to think that children could suffer from that and not even be tested to see if they like me could have Lyme Disease is incomprehensible. I was so lucky to have two pioneering doctors treat me on long term antibiotics and now be without pain and disability.
For more information about antibiotic treatment and Arthritis see www.roadback.org
and for links into information about Lyme Disease see www.lymediseaseaction.org.uk
Below is a recent video which includes an interview with Dr Jones.