AWARENESS THAT BLOOD TESTS ARE NOT DEFINITIVE

Wednesday 19 May 2010

AWARENESS THAT BLOOD TESTS ARE NOT DEFINITIVE

Blood tests for Lyme Disease are not definitive.

The makers of the test kits which are used in the UK are Trinity Biotech.
They say
'The Trinity Biotech EU Lyme + VlsE IgG Enzyme Immunoassay (EIA) Test System is a qualitative test intended for use in the presumptive detection of human IgG antibodies to Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi(B-31) including the VlsE Protein in human serum. This EIA system should be used to test serum from patients with a history and symptoms of infection with Borrelia. All positive and equivocal specimens should be re-tested with a highly specific, second-tier test such as Western blot. Positive second-tier results are supportive evidence of infection with Borrelia. The diagnosis of Lyme disease should be made based on history and symptoms (such as erythema migrans), and other laboratory data, in addition to the presence of antibodies to Borrelia afzelii, Borrelia garinii and B. burgdorferi(B-31) including the VlsE protein. Negative results (either first or second-tier) should not be used to exclude Lyme disease.'

Here are 103 studies on Seronegativity from Lyme Info a very useful resource.

At the IDSA review hearing Steven Phillips presented 25 studies on Seronegativity and Persistent infection after courses of antibiotic treatment. Other presenters questioned the over reliance on tests that some research shows can miss up to 50% of cases.
Details of presentations can be found on ILADS website here

Interestingly of the IDSA review panel 4 out of 8 of that panel had a problem over the blood tests yet what did the IDSA do, rubber stamp the guidelines and disregard the 4 Doctors who were concerned about the science supporting that blood tests could be nearly 100%. The Calda Blog sets out the problems well.here

My symptoms were Arthritis and muscle weakness mainly but also tingling and twitching in my hands feet, legs and face, a constant sore throat for several years and the worst symptom was swallowing problems dysphargia.

I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disorder, Polymyalgia Rheumatica and eventually Lyme Disease.

I never tested positive for Lyme Disease but then 20 months of steroids for the PMR diagnosis would probably have skewed the results as would the antibiotic treatment received. However I did have two bulls eye rashes, the hall mark of Lyme, but sadly missed by the Locum doctor I saw. My GP was advised by Sue O'Connell the Head of the Lyme reference unit to stop antibiotics. When I did my symptoms deteriorated and so GP put me back on them.

Thank goodness the GP followed her own instincts and continued to treat me and I continued to improve, otherwise I doubt I would be enjoying my current good health.

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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012

LOOKING AT LYME DISEASE - MSIDS

Wednesday 19 May 2010

AWARENESS THAT BLOOD TESTS ARE NOT DEFINITIVE

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