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Posted Jul 17 2012 5:19pm

Global Challenges in Diagnosing and Managing Lyme Disease—Closing Knowledge Gaps here  

Subcommittee on Africa, Global Health, and Human Rights
Chaired by Christopher H. Smith (R-NJ)
    Stephen W. Barthold, Ph.D.
    Distinguished Professor
    Department of Pathology, Microbiology and Immunology
    Center of Comparative Medicine, School of Veterinary Medicine University of California, DavisRaphael Stricker, M.D.
    Vice President
    International Lyme and Associated Diseases SocietyMark Eshoo, Ph.D.
    Director, New Technology Development
    AbbottMs. Patricia Smith
    Lyme Disease AssociationMr. Evan White
    Lyme Disease Patient
  • Ms. Stella Huyshe-Shires
    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 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 now be downloaded from the above link or here it is again here

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