LOOKING AT LYME DISEASE - MSIDS: OUT WITH THE OLD - LYME TESTING IN ENGLAND AND WALES

Wednesday 4 April 2012

OUT WITH THE OLD - LYME TESTING IN ENGLAND AND WALES

News today posted on Lyme Disease Action Website here

Dr Sue O'Connell previous head of the LBU at Southampton retired on Friday March 30th

I wish her a very long retirement long enough to watch the science changing regarding Lyme Disease and other tick borne illnesses and long enough for her to reflect how many patients could have been helped had science been allowed to speak above people's opinions.

My GP said Dr O'Connell told her to stop giving me antibiotics, other patients have told me the same. Thankfully in my case my GP could see my improvements and continued to treat me as I continued to recover - many other patients tell me that their doctors refused further treatment because of her advice, if that is the case I am sure a cry of delight will be sounding from many in the UK Lyme community at the news of her Retirement.

LDA go on to say the Head of Emerging Infections and Zoonoses in the Department of Health who has been responsible for Minister' responses on Lyme disease over the last two governments also retires.

Another piece of delightful news lets hope the successor can pen a more intelligent reply than those I have received since 2007. As a Retired Civil Servant with experience of similar such correspondence from within the DWP I would not have accepted such poor correspondence.

This is also good news to Lyme patients elsewhere in the World as this is one less member of what is commonly referred to as the Lyme Cabal.

There is a little tune keeps popping into my head something from the Wizard of Oz - I am sure those familiar with the problems Lyme patients have had over the years will guess the tune I refer to.

Good to hear the testing is being moved from Southampton to Porton and with new testing being introduced lets hope this will help to improve testing and benefit the patients.

Another tune that comes to mind is 'Times they are a changing' - it seems there are stirrings from many of the major countries recently Germany, France, can't wait to hear the outcome from a recent meeting in Canada and of course it started this year with the US - Persistence study in non human primates here
and now recently Australia

Do go to Lyme Disease Action to read their report here on all change.

3 comments:

Camp Other5 April 2012 at 07:02
Re Wizard of OZ refs:

Well if you want to be snide about it, naturally one would assume to use this clip on youtube:

http://www.youtube.com/watch?v=9Jn8K8EA7-Q

And there's the lesser known Klaus Nomi version:

http://www.youtube.com/watch?v=8vXR5gjRMPk

But if you're just hopeful about new blood coming in with new ideas, then this clip may be better:

http://www.youtube.com/watch?v=9nq34mISKUo

Lyrics from this bit:

You're out of the dark
You're out of the night
Step into the sun,
step into the light

Keep straight ahead
For the most glorious place
On the Face of the Earth
Or the sky

Hold onto your breath
Hold onto your heart
Hold onto your hope

March up to the gate
And bid it open
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Camp Other5 April 2012 at 07:06
And wow, this German study?

http://www.ncbi.nlm.nih.gov/pubmed/22470370

Thanks for pointing it out. I didn't know about it.

This may very well tie into persistent spirochetes that do not respond to antibiotics, you think?
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Joanne5 April 2012 at 21:18
Hi Camp Thanks for the U tube links - I am still humming the tune.
It will be certainly interesting to see how things pan out. Last year LDA charity invieted a speaker from Porton to present on their work. At the last minute they were told by their 'masters' that they were not allowed to present. That was taking things to extremes and must be a first for a medical conference for the heavy brigade to step in.
Here's hoping there will be a very big shake up and perhaps another year Porton might be allowed to oblige with presenting especially as there are new testing methods.
Now as to the German study this is the full paper http://www.frontiersin.org/Microbial_Immunology/10.3389/fmicb.2012.00104/full I just noticed you posted about it and as there has been some discussion about it on Facebook I will pop along to see what your take is.
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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