Thursday, May 7, 2015

More Should Be Done to Fight Lyme Disease

From the Sharon Advocate

    • Column: More should be done to fight Lyme disease

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      • By Laura Henze Russell/
        Guest Columnist
      Posted May. 7, 2015 at 8:17 AM 
      Lyme disease is one of the biggest health scourges of our time. The numbers of patients affected keeps rising skyward with official CDC estimates now at 300,000, or 10 cases for every one officially reported.
      Patients and observers believe many more cases exist than are ever diagnosed, as the walking wounded and mysteriously ill wander among us.
      May Day is being organized as a national day of action for Lyme awareness and proper treatment, with advocates in Washington, DC until May 1 to lobby Congress and meet with the CDC to call for better diagnostic and treatment guidelines.
      Our public health system lags badly on all the biggest scourges impacting health. As with other governmental institutions, change is lumpy, episodic and slow. While that is unfortunate in other fields, in health where new threats emerge but their seriousness is not recognized and acted upon, it is dangerous.
      Our public health system is quick to act on exotic, foreign, rare threats, but not on the garden variety, everyday things in our yards, homes and bodies that are making us ill.
      Growing up on Long Island and living in eastern Massachusetts, Lyme is among the three challenges that took down my health and vitality for more than 20 years.
      For others and me with persistent Lyme - a short course of generic doxycycline hyclate and even a longer course, didn't fully work (it did make me nauseous).
      Perhaps Lyme spirochetes have developed resistance, or it only works on some strains and times of the life cycle, or people with different gene glitches need different Rx - all of these questions urgently need research. A short course of doxycycline monohydrate did work.
      Different treatments are needed for different stages of the disease. Why is this knowledge not spreading in the medical community and to the CDC, leaving patients to fight to update their guidelines?
      Regarding tests, it is important to remember this: "In order to cycle between two very different hosts, B. burgdorferi varies its gene expression, leading to different protein components and enabling physiological adaptation to these environments [49–53]. A number of studies have begun to delineate those changes." ( Therefore, "gold standard" PCR tests with narrow interpretations regarding the bands may be correct in identifying a particular stage of a particular strain of Borrelia burgdorferi (Lyme spirochete), but miss related strains of the disease, miss other life cycle stages (e.g. spores), and also miss co-infections, for which too few doctors test.
      The CDC must keep up with new science, diagnostics and effective treatments in this era of precision medicine. The FDA has far to go in protecting people from all kinds of toxics which it lets slip through the regulatory approval process, especially for installed medical and dental devices for which people have varying genetic tolerance and toxicity levels.
      Informed observers - from physicians to researchers to patients - believe Lyme reached truly epidemic proportions. It is worth exploring whether prophylaxis is in order for those at greatest risk, just as one takes prophylactic Rx for malaria when traveling to parts of Africa, Asia, and Central and South America.  
      There is a renewed drive to crack down on anything that deviates from medical orthodoxy. True innovation and advancement comes from disruption, whether in medicine or other fields. These agencies need a reboot on materials safety, and to take a broader view of tests and treatments that are helping hard-to-diagnose but very ill patients recover and get back with their lives, back to their work and paying taxes, and fully back to their families. They need to put patients and health first.
      Laura Henze Russell is the principal of Precision Research, Writing and Communications in         Sharon.

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