1. NIH Should Admit They Were Wrong
    Phyllis Mervine Phyllis Mervine United States says:
    September 5, 2012 at 7:53 PM

    Congratulations to Allison DeLong and her colleagues for showing that the emperor has no clothes. Doctors have long used the IDSA interpretation of the NIH trials as an excuse for medical neglect. Now, hopefully, no more.

    When I was on the NIH Advisory Panel for Klempner’s clinical trial, about a decade ago, the other patient representative and I expressed concern that the results, if negative, would be used as an excuse to deny patients care. Phil Baker, NIH Lyme Program Officer at the time, assured us that the trial could do no more than determine that this particular treatment worked, or didn’t work, in this particular subset of patients. Perhaps naively, we believed him. The entire Advisory Panel knew the study design didn’t permit a broad interpretation.

    NIH conveniently forgot their promise after the Data Safety and Monitoring Board announced its findings. Within days, NIH published news releases and clinical alerts with this headline: “Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment.” I suggested they substitute "Chronic Lyme Disease Study Shows 3 Months of Antibiotic Treatment Inadequate."  No one responded to my letter.

    A few months later the NEJM published the paper in which the authors also leap to the conclusion, “It is unlikely that more prolonged antibiotic therapy or a different combination of antibiotics would result in greater improvement than was observed in this study.” As DeLong points out, there was no evidence for this wild conjecture.

    Interestingly, the news release also stated that the investigators found that “the impact of Lyme disease on physical health was at least equal to the disability of patients with congestive heart failure and osteoarthritis.” This contradicts the IDSA claim that chronic Lyme is no more serious than the aches and pains of daily living.

    The Klempner study was never designed to settle the question of the efficacy of long-term treatment, yet more than 10 years later it is still being used to deny care to seriously ill people. DeLong proves that the patient advocates were right all along. It’s time for NIH to admit it.

    Reply
    • Doctors refuse to consider Lyme
      Carol Lee Palumbo` Carol Lee Palumbo` United States says:
      September 12, 2012 at 1:08 AM

      I find it incredibly ironic that Cleveland Clinic has their ad at the top left of this page.  The doctors at the Mellon Center refused to test me for Lyme even though the MRI's said "Either M.S. or Lyme"  After being given IV steriods, I am now on antibiotics prob forever but am gaining ground every day; although because of the steriods, the bacteria is impossible to kill as it has mutated from time and improper treatment.  Doctors need to become proficient in the treatment of Lyme before they administer anything, and if they don't know about the disease, send the patient to someone that does.  When not treated properly, the disease becomes chronic and will never go away...Just aches and pains? Live the life of a Lyme patient one day and then tell me that

      Reply
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