Saturday 28 June 2014

CDC WEBINAR ON LYME DISEASE PERSISTENCE

On May 22, 2014 the Department of Health and Human Services - including the National Institute of Allergy and Infectious Diseases, the Centers for Disease Control and the Food and Drug Administration - held a "Special Webinar on Lyme Disease and Borrelia Persistence" that proved to be very interesting. They invited folks to listen in and people could send in questions, too. There were some really great questions submitted.

Speaker lineup was:

Dr. Stephen Barthold, University of California, Davis
The Comparative Biology of Borrelia burgdorferi Persistence

Dr. Linda Bockenstedt, Yale School of Medicine
Design of Animal Studies to Assess Borrelia burgdorferi Persistence

Dr. Monica Embers, Tulane University
Studies of B. burgdorferi Persistence in the Nonhuman Primate

Dr. Adriana Marques, NIH, NIAID
Searching for Persistence of Infection in Lyme disease

Dr. Linden Hu, Tufts University
Borrelia burgdorferi Persistence: Consensus and Controversy – where do we go from here?

If you missed it, here are links to the transcript and the coordinating slides:

http://www.cdc.gov/lyme/pdfs/PersistenceWebinarSlides.pdf

http://www.cdc.gov/lyme/pdfs/PersistenceTranscript.pdf

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Lyme disease

April 10, 2014 by Angela Herring

Earlier this year, the Centers for Disease Control and Prevention projected
the number of undiagnosed cases of Lyme disease to be 10-fold higher than
previously believed. Of the newly identified 300,000 people infected each
year, between 30,000 and 60,000 fall into the category of having chronic
Lyme, where symptoms persist despite zero evidence that the pathogen
remains in their bodies. With the support of a Lyme Research Alliance grant,
University Distinguished Professor of Biology Kim Lewis in the
College of Science is exploring alternative approaches to curing chronic
Lyme disease. We asked him to explain his research goals and why now is
the perfect time to find a cure.

- See more at: http://www.northeastern.edu/news/2014/04/lewis-3qs/

Sunday 1 June 2014

LYME DISEASE - PATHWAY- PUBLIC HEALTH ENGLAND. TESTING PROBLEMS - PROF PERRONNE

PUBLIC HEALTH ENGLAND - intend reviewing their Guidance on Lyme disease as discussed at a meeting in October an earlier post here

PHE have made a start by publishing a -

Suggested referral pathway for patients with symptoms related to Lyme disease
http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317141297288

Some useful progress has been made provided doctors follow this guidance.

PHE have worked with charity Lyme Disease Action in producing this pathway and LDA discuss this here

This may be helpful for patients outside the UK too.

The Norvect Conference sounds to have been very successful a number of slides were posted on Twitter so for Twitter users #Norvect will find the tweets. My understanding is that videos of the conference will be available.

Prof. Christian Perronne who presented at Norvect just recently published a paper

Lyme and associated tick-borne diseases: global challenges in the context of a public health threat. Running title: Global challenges of Lyme disease

This is an excellent paper discussing various problems with testing here

May was Worldwide Lyme Disease Awareness month UK website here

Alongside these Worldwide protest was a Protest outside the IDSA headquarters in US -this was reported on by Jessica Bernstein Truth out here

Irate Lyme Disease Patients Storm "Dinner Party" at IDSA Headquarters

An excellent well written article but also some rather interesting and informative comments on that article.

We really need the media to do so much more to bring this disease into the forefront although it was good to see The Daily Mail picked up on this - here

The bacteria that has been around longer than humans: Lyme disease discovered in 15 million year old ticks

sometimes the devil is in the detail and often overlooked - Poinar said -

'They can carry bacteria that cause a wide range of diseases, affect many different animal species, and often are not even understood or recognized by doctors.

'It’s likely that many ailments in human history for which doctors had no explanation have been caused by tick-borne disease.'

Dr Horowitz was in an recent radio program with Andy Abrahams-Wilson Documentary film maker of Under our Skin this is the link to the program here during the interview the CDC figures for Lyme Disease were discussed - this year CDC upped their figures to 300000 a year but recently Yale released further information and Dr Horowitz says this could mean that between 2 and 3 million people could actually be infected with Lyme Disease a year. Not really a surprise as a couple of years ago Germany reported 1 million cases for Lyme Disease a year here .

Also this month -

LYME DISEASE A SILENT EPIDEMIC PRODUCED BY FRANCE 5 PUBLIC NETWORK AND GRAND ANGLE DIRECTED BY CHANTAL PERRIN

from Chantal Perrin

This is an excellent Film which needs to be seen on UK National Television ( English version) - link to the vimeo is here It was only released a week ago and had 6400 views.

I will let the reader draw their own conclusions from all the above, which are only a few of the many interesting things I read about related to Lyme Disease, to read more follow me on Facebook which is proving to be a useful place to hear about emerging developments.

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