THE CHALLENGES OF LYME DISEASE: EMERGING RESEARCH-PEDIATRIC CARE

Sunday 9 May 2010

THE CHALLENGES OF LYME DISEASE: EMERGING RESEARCH-PEDIATRIC CARE

If you click on the above you will be able to read the details.

What an impressive line up of Doctors, Researchers and Advocates.

The meeting was organised for yesterday by Eva Sapi at New Haven University

This is the New Haven Lyme research page here

Dr. Eva Sapi, a professor of cellular and molecular biology has Lyme Disease, and is researching it too.

Because of the dedication of all these people and so many more, patients like myself have been helped to get their health back.

Sadly main stream medicine is way behind on the developments of this emerging disease and so if you have symptoms that could be attributed to Lyme Disease you need to do your own investigations before discussing with your doctors.

The symptoms of Lyme Disease are many, mine were mainly Arthritis, Muscle weakness, Fatigue, inflammation, Bursitis diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica and finally Lyme disease and on long term antibiotics, not recognised by main stream medicine for Lyme Disease I have my health and my life back.

Many of the patients I am in touch with on Eurolyme a chat line have neurological symptoms and some have been diagnosed with MS. The worst of my symptoms was Dysphagia, swallowing difficulties and I did have some Peripheral Neuropathies all resolved on antibiotics.

So a big thank you to all these dedicated Lyme Warriors, hopefully the presentations will be available on DVD so that many more Doctors can be educated into helping the thousands more patients who are given symptomatic medication rather than medication fighting the cause of their illness.

2 comments:

Anonymous11 May 2010 at 12:00
Apparently there is a CD of the conference.
Here are the contact details, costs would probably be more then $10 to the UK though.

For info on how to get the CD:
Send $10.00 (which includes shipping)payable to the University of New Haven to:

Eva Sapi Ph.D.
Associate Professor and Research Scholar
Director of Lyme Disease Research
Department of Biology and Environmental Sciences
University of New Haven, Dodds Hall #314
300 Boston Post Road West Haven, CT 06516
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Joanne11 May 2010 at 16:49
Very many thanks I think that is a definite must and may even get my doctor to have a look at it, nothing ventured nothing gained. Especially as there are more patients now being treated at my surgery so one has to wonder how many more there could be.
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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