ILADS Submits
Pop the cork off the Champagne and let the fireworks rip! ILADS made its document submission for the IDSA Lyme disease review panel. And the weight of evidence was staggering–
Who: I headed the working group, which consisted of Drs. Cameron, Stricker, Liegner, Maloney, Green, Phillips, Zackrison, Tao Liu, Ph.D., Allison DeLong, M.S., and Barbara Blossom, B.A.
When: Submission received by IDSA on April 23rd.
What: Over 1600 pages of analysis and research studies. Close to 300 pages of original analysis contesting IDSA recommendations.
Why: Because the recommendations are—well, are not just, and because, well, because the “recommendations” are treated as “mandatory” by insurers, medical boards, hospitals—you get the picture.
How many? 10. The working group contested the following recommendations and assertions:
The Lab Diagnostic Test Requirement–Page 1090
The Restriction on the Use of Clinical Judgment—Pages 1089-90
The Prophylaxis of Lyme disease–Page 1100
The Denial of Persistence–Page 1118
The Restrictions on Specific Therapeutic Options–Recommendation 5, Page 1105
The Early Lyme disease Treatment Duration–Recommendation 1, Page 1104
The Late Neurologic Lyme Disease–Recommendation 3, Page 1113
The Recommendations for the Treatment of Arthritis –Recommendations 1 and 2, Page 1113
Post Lyme Disease Syndrome Definition—Recommendation 1, Page 1120
Post Lyme Disease Syndrome Treatment Limitation—Recommendation 2, Pages 1120-1121
Like people in many other areas of the country, Southern California Lyme Disease (LD) victims find it IMPOSSIBLE to receive appropriate diagnosis and treatment locally. This exacts a huge price on our health and on the expenses we incur with respect to uninsured medical care . Physicians affiliated with all our major health programs/clinics follow current IDSA/CDC guidelines and routinely dismiss our rashes and symptoms. The new guidelines MUST be developed by physicians who REGULARLY treat LD patients and who can effectively interpret sensitive serology, treatment effects, and then decide next steps. And, yes, all these facets can be backed by an enormous body of research. Lyme-literate physicians have been persecuted unmercifully and have been forced to leave their practices when we most need them. This has been a shameful situation for far too long. The new panel MUST also have no conflicting interests in any other aspect of LD. PLEASE HELP US!