LYME DISEASE IN THE TIMES

Monday 8 February 2010

LYME DISEASE IN THE TIMES

At last we have an article in The Times Newspaper on Lyme Disease. It is quite a good article written by a journalist about his experience with Cervical Myelopathy and Lyme Disease.

I am pleased to see he talks about Under Our Skin Documentary film it is time our UK media paid attention to this very important documentary and of course the controversy over the diagnosis of Lyme disease which is leaving so many thousands of patients the World over without diagnosis and without treatment that can help them.

I spent years with Arthritis and muscle weakness and was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica only to find that it was Lyme Disease and on long term antibiotics have my health and my life back.

I wish Alex well with his treatment, he had an EM rash for 7 months! and still several doctors failed to diagnose and he found his own diagnosis through the internet, clearly his case has been complicated by his spinal surgery, but then whose Chronic Lyme Disease case is not complex.

I do hope all you Lyme patients leave a comment on this article as I understand from Alex that he may well do a follow up once he has time to do some research and the more reaction he gets on line to the article the greater his chances of a follow up article.

I started this blog because of my frustrations with the media in the UK failing to cover the controversy about Lyme Disease. I posted about this Lyme Disease in the UK

However I would like to say a thank you to Alex and despite what I say in my article above on Lyme Disease in the UK, I am truly sorry for what he is going through. Those of us who have experienced Chronic Lyme Disease would not wish this illness on another person. That is why we try so hard to spread awareness, when we could just move on and get on with our lives, leaving innocent people and children to suffer because of ignorance.

5 comments:

Anonymous8 February 2010 at 13:06
Joanne

It was great to see such a decent article in the national press. It is incredibly difficult to get this beastly illness recognised and I am sure that this will help.

Like you I too feel great sympathy for Alex finding himself in this predicament.

EM rashes are funny things. Alex has had one for months on end. My daughter never had one, but nine years after becoming ill and whilst she was being treated with IV antibiotics she produced a textbook EM rash on her leg.

I think your Lyme blog is fantastic. I can't get over the fact that you are getting such a lot of hits. If this was really such a minority subject there wouldn't be so many people wanting to read your fascinating blog.

Keep up your amazing work.
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Unknown8 February 2010 at 16:06
Great to see more coverage on Lyme Disease. An EM rash is such a classic sign of active Lyme infections, yet so many doctors don't seem to recognise this or understand how complex it is to treat Lyme once the window of the first few post-bite weeks has been missed. My Lyme Disease wasn't recognised at all by the health service and, like Alex, I began to research my wide range of peculiar and debilitating symptoms myself. It's devastating to lose your health and strength to an infection that could have been cured quite easily if it had been picked up straight away and treated vigorously enough. This is an excellent blog Joanne - many thanks for the effort you're putting in to spread the word.
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Jan9 February 2010 at 08:28
Thanks Joanne, lets hope someone finally sits up and takes notice. Lyme does seem to get occasional coverage in the press now but then no-one ever seems to pick it up and run with it. I hope this is the one that does it!
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Anonymous9 February 2010 at 12:46
Dear Joanne, I applaud your devotion to getting the truth out there concerning the misdiagnosis and therefore mistreatment of this devastating disease. As more awareness is raised, perhaps doctors and the medical establishment will take the blinders off and actually help people suffering from it. Keep up the effort, we are behind you 100%.
Frances
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Joanne9 February 2010 at 13:00
Thank you all for your comments especially Fairegarden it is nice to have support from my garden blogger friends and several have encouraged me.

For any Lyme patients who follow this blog and are in need of a bit of chearing up do pop over to Francis blog by clicking on her name. The photos she posts are such a visual treat and the posts she writes so interesting to read.

Visiting such lovely garden blogs help to counteract my frustration with the medical world for not taking Lyme Disease more seriously.
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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