Peter Demitry, a physician, former Navy test pilot and father of ill children received a standing ovation from the audience when he spoke emotionally of the contrast between the early health-filled years of his family and the nine years following his teenage son’s tick bite.
He said
“Lyme moms” and his own patients “taught me more in two years than I’d learned practicing orthodox medicine in twenty.”
Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient’s annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.
Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville. for more information click here
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Of the 5 doctors and 3 Rheumatologists I saw the biggest problem was that they did not listen to me describing my symptoms.
One Professor of Rheumatology who works at our top London Hospital examined me. He established that I had bursitis in my right hip although two years earlier my local Rheumatologist established I had bursitis in my left hip, infact there was little to choose between the pain in both hips throughout that two year period.
The Prof. also established I had problems with hips which he said was osteo arthritis they were very painful when he manipulating my legs. (since long term antibiotic treatment they are now completely recovered no pain no signs of arthritis or stiffness)
He examined my shoulders, ankles and knees which were also painful and said there were signs of arthritis.
I had been referred to him by my GP because I had arthritis in virtually every joint and muscle weakness in many muscles. I had been on steroids 20 months for Polymyalgia Rheumatica diagnosis but when given antibiotics for a chest infection my arthritis and muscle weakness significantly improved and led GP to suspect Lyme Disease. ( her computer confirmed times I had visited the surgery with bites, rashes, summer flu' and migrating arthralgias)
This Prof. was recommended to GP by the 'expert' at HPA as being someone with an interest in Lyme Disease.
He examined my wrists last and his comment to me was 'what have you done to sprain your wrist?'
I think at that point I realised I was wasting my time with him he clearly was not listening, I had said that I had pain and stiffness in virtually every joint many of which he had already confirmed so why when he got to my wrists did he question if I had damaged them somehow?
He said that the blood tests for Lyme being negative he was assured by the 'expert' at HPA meant I did not have Lyme Disease. ( This was so clearly a false premise as I had been on steroids for 20 months which suppress the immune response and that is what is measured with a Lyme Disease test the immune systems ability to produce antibodies. Since having access to the Internet the abundance of research available shows that these tests so relied upon by our doctors are missing at least 50% of cases.)
The Prof.'s diagnosis was Lyme Neurosis from reading too much on the internet about Lyme Disease. (Little did he know at that time I did not have access to the Internet and it was in fact my GP who suspected Lyme Disease. ) He wrote this to GP and said I had ME/CFS and should try antidepressants and CBT.
Thank goodness my GP had listened to my symptoms had seen my incapacity and many signs of inflammation and improvements and she continued to treat me following ILADS guidelines and most importantly I continued to improve in health.
Until the science which is still emerging in the field of tick borne illness is more widely disseminated amongst our doctors it is important to do our own research so we can best advocate for what treatments help us.
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