LYME DISEASE TREATMENT NHS

Wednesday, 28 November 2012

LYME DISEASE TREATMENT NHS

Lyme Disease treatment on the NHS has been a very controversial area for those patients who fail the usual couple of weeks antibiotics usually given by NHS doctors following the HPA guidance. That is when they are treated in the early stages of the illness, because so many of us missed that window of opportunity despite seeking medical attention for tick bites, bulls eye rashes, summer flu' and migrating arthralgias.

Lyme Disease Action charity has been working with the James Lind Alliance reviewing the available research on diagnosis and treatment of Lyme disease looking for areas of uncertainties.

The James Lind Alliance is funded by the National Institute for Health.

Links to the Lyme disease Action website here

Links to more than 39 uncertainties here

Doctors and patients or their carers can vote on the top ten priorities for research before the 9th December 2012 here

Hopefully this research will be brought to the attention of doctors who frequently fail to even recognise the certainties of Lyme Disease such as the EM Rash -

'Does EM provide an ‘accurate’ clinical diagnosis of LD?

Yes it does. See Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme
borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical
Microbiology and Infection. 2011 Jan;17(1):69–79.

In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data.

By identifying uncertainties in the research hopefully in time research will be directed into these areas that need more detailed investigation.

1 comment:

Lindsay Pera11 January 2013 at 18:24
I’m reaching out to you because you are an active leader in the Lyme community and we want to let you know that we’re about to launch a new, web-based application tool designed specifically to help people with Lyme Complex manage their Lyme journey called: Chronic Tracker:Lyme (www.chronic-tracker.com/welcome-to-chronic-trackerlyme). You might have seen our ad in the latest Lyme Times or the posting last month on Lyme Disease.org’s facebook page.

I am excited to let you know about the tool before its official launch so that you can familiarize yourself with it and see if it is something you’d want to share with your community.

I hope it will help empower people to take control of their care. We would love your feedback, as our primary goal has been to create a tool that is truly easy to use and will work for those of us who deal with the impact of Lyme on our lives every day.

Please take a look and give Chronic Tracker:Lyme a try. Let us know what you think.

In Good Health,

Lindsay Pera (mom and parent to 3 with Lyme, and co-creator of Chronic Tracker:Lyme)

Faced with the daunting task of managing not only her care, but that of her three children, and unable to find an existing satisfactory solution, Lindsay has co-created a care management tool to help her stay on top of the challenges that Lyme and its co-infections were bringing to her family, allowing her to take charge of their healing journey. Now Lindsay is sharing the tool she created with the Lyme Community.

www.chronic-tracker.com/welcome-to-chronic-trackerlyme
www.facebook.com/MyLymeStory
www.facebook.com/Chronicwellnesstools
lyme.chronic-tracker.com
chronic-tracker.com
www.youtube.com/ChronicTracker
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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