Tuesday, 17 July 2012

GLOBAL CHALLENGES IN DIAGNOSING AND MANAGING LYME DISEASE


Global Challenges in Diagnosing and Managing Lyme Disease—Closing Knowledge Gaps here  THIS LINK NO LONGER WORKS BUT SEE BELOW


Subcommittee on Africa, Global Health, and Human Rights
Chaired by Christopher H. Smith (R-NJ)

witnesses
  • Stephen W. Barthold, Ph.D.
    Distinguished Professor
    Department of Pathology, Microbiology and Immunology
    Center of Comparative Medicine, School of Veterinary Medicine University of California, Davis
  • Raphael Stricker, M.D.
    Vice President
    International Lyme and Associated Diseases Society
  • Mark Eshoo, Ph.D.
    Director, New Technology Development
    Abbott
  • Ms. Patricia Smith
    President
    Lyme Disease Association
  • Mr. Evan White
    Lyme Disease Patient
  • Ms. Stella Huyshe-Shires
    Chair
    Lyme Disease Action

    I have just been listening to this live.  It is available to watch again as are the written testaments, Dr Steven Barthold's is definitely one to look out for.
    Lyme Disease Action have some comprehensive links here  


    Meanwhile just a few notes I made plus many more posted by Lyme disease.org on Facebook here 

    Barthold: dormant, non-dividing bacteria are tolerant of antibiotics. During persistent infection there is a 10-fold reduction in number of bacteria but they are not dividing, so antibiotics can't hurt them.

     100% of animals remain infected after antibiotics--- described as debris but it is often metabolically viable organisms.

    12 months after treatment we see widescale prevalence of spirochetes but it remains to be determined the role of this persistence --not everyone is showing symptoms.

     Biofilms - universal mechanism for bacteria, virus and fungus throughout the world for microbial communities. Borrelia - persistent infection --- reduction in host/animal ( with antibiotics?)- go dormant (not necessarily in bio film) - antibiotics can't touch.

    If you just enlarge the pot of funding, and you award the money to the same old school club of people who feed off Lyme disease, we won't get anywhere. If NIH is willing, they should put out a call for applications [for research] that is more focussed on biology.

    Dr. Stricker: About 70% of my patients will get better with long-term antibiotics. This is very rewarding for a physician and helps me to ignore the politics and just go ahead and treat them.

    In his investigation, the CT Attorney General found that a group of about 14 individuals within the IDSA were responsible for making decisions about Lyme disease, and the rest of the 9,000 member organization follows their lead. This has been hugely problematic.

    I have a mentoring program for physicians but it's hard to find doctors who are want to do it. The controversy around Lyme disease has had a chilling effect on developing doctors who want to learn about how to deal with Lyme disease. 

    Ms. Stella Huyshe-Shires of Lyme Disease Action in the UK said IDSA guidelines are influencing UK doctors. 
    If patients have visible arthritis, they may be able to get more treatment, "but if you have invisible pain, you can't," she said.

     European guidelines are based on the IDSA guidelines, but are more clear on stating where the evidence is uncertain and note where studies have not been done.

    In the UK, even after the civil investigation, no one thought it necessary to question the IDSA guidelines, even though the IDSA's own panel had recommended changes.

    LDA President Pat Smith: Other diseases have advisory committees and nobody says anything bad about them. The government can do this. It's not even difficult or expensive.

     When my daughter was ill, people said she just wanted to avoid school. What 15 year old wants to stay home with her mother for 4 years? What mother wants her 15 year old to be home for 4 years?

    Pat Smith also spoke eloquently about the problems of having children treated, with doctors and Social Services accusing  parents of Munchhausen's by proxy (even when a physician had diagnosed the child) and children being taken into care of the authorities. As crazy as this sounds it also happens here in the UK.

    Evan White gave an account of his struggles for diagnosis and treatment and his successful recovery. His successes in life indicating what can be achieved if only people are treated appropriately.

    Excellent presentations by all those involved the marked absence of IDSA, NIH and CDC from this hearing despite invitations, clearly shows a lack of will to help so many sick patients.

    The Testimony statements can be accessed through Lyme Disease Action website First and Second recording here

     First video http://www.ustream.tv/recorded/24058724 
            Second Video http://www.ustream.tv/recorded/24060689  


9 comments:

  1. I listened to the hearing, too, and have some very rough notes I took and posted to Camp Other blog:

    http://campother.blogspot.com/2012/07/notes-house-subcommittee-hearing-on.html

    Check it out. They might be useful until the witnesses post their written testimony online. So far I don't see any link for an archived video of the hearing.

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  2. Thanks Camp i just read your summary what a brilliant job you have done.

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  3. The testimonies can now be viewed at the original link

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    Replies
    1. I was only able to watch the beginning, and hope they make this available. People need to see this! I'll keep watching for it.

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  4. Thanks, Joanne. I just updated the entry with the link to the page with the testimony pdfs.

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  5. Hey, I found links to video!

    http://www.lymediseaseaction.org.uk/latest-news/us-congressional-hearing-on-lyme-disease/

    http://www.ustream.tv/recorded/24058724

    http://www.ustream.tv/recorded/24060689

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  6. Thanks Bird I did update the post as further information was available. I am so pleased they archived this as there was some important information shared

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  7. Great LDA have the links to watch this excellent Congressional hearing in which Barthold and many others including Stella chair of LDA gave testimony - although the last link does not work the previous ones into First and second recordings still work http://www.lymediseaseaction.org.uk/latest-news/us-congressional-hearing-on-lyme-disease/

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  8. Barthold's written statement http://archives.republicans.foreignaffairs.house.gov/112/HHRG-112-FA16-WState-BartholdS-20120717.pdf

    ReplyDelete