“The Financial Burden of Lyme Disease” Presentation at Gibson Forum
Lorraine Johnson’s presentation at the Gibson Forum in Saratoga New York at Skidmore College on May 21st, 2012.
Do You Have Lyme Disease?
Lyme Policy Wonk
26
JUN
2012
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Are we supposed to be able to access the audio? Because I cannot seem to..
I saw 18 doctors in 4 months. Despite a clinical picture that was clearly consistent with Lyme, hospitalized for two weeks with severe encephalitis, myelitis, neuropathy, balance problems, confusion, significant memory problems, among other telling symptoms,not explained by any other cause, every doctor concluded that I did NOT have Lyme based on the garbage ELISA test. It was negative three times. “You don’t have Lyme.” They all relied on the ELISA as a reliable test. Not a single MD sent off a Western Blot, despite me asking repeatedly to do that. I finally found a doctor to send a Western blot which was CDC positive, as I expected. That was followed by another positive western blot (by non-CDC criteria), and then two positive borrelia cultures by Advanced labs. The ELISA needs to be eliminated entirely. It is criminal for the IDSA and CDC to continue to recommend their two tier testing strategy for diagnosis. They are destroying people’s lives and neurological function. How long is this going to go on? Additionally, insurance companies deny coverage for critically important IV antibiotics. It is very clear that little value is placed on patients’ neurological function. I have been out of work as a physician for nearly a year. If it wasn’t for 6 months of iv antibiotics, I would never be able to return to work. But the insurance company sees no reason for long term antibiotics! The CDC, IDSA, and insurance companies need to take their blinders off and open their minds to the reality of the situation. Did they do the same thing with HIV/AIDS in it’s early stages?
Sincerely,
Ill in San Diego
I’m frustrated that the government is putting all there money and focus on Zika, which I understand is scarey but where prevention is easy to accomplish. But look at the stats of People in US for Zika vs. Lyme disease and other tick borne illnesses. Why isn’t the focus on those hundreds of thousands of people ?