Tuesday, February 25, 2014

CDC's Survey Results Suggest 1.5 Million Suffer Chronic Lyme Disease

by Alix Mayer, Spirochicks Co-founder
Edited: August 31, 2014


[San Francisco, CA] In 2013, the CDC increased the Lyme disease incidence rate by a factor of ten. The CDC now estimates there are 300,000 new confirmed cases per year, whether or not the cases are actually reported to the CDC. The results of the CDC-funded studies that led to the re-estimate instantly make a myth of the common mantra that "Lyme disease is hard to catch and easy to treat." In fact, the results suggest a massive public health crisis, as the data indicate that treatment failure rates may be quite high, leading to 1.5 million chronic Lyme cases, and rendering 58% of chronic Lyme disease patients unemployed.

The new 300,000 incidence rate is based on the results of recent studies commissioned by the CDC. In one of the studies, the CDC licensed questions about Lyme disease in the 2009, 2011 and 2012 HealthStyles survey. (Hook et al, 2013) HealthStyles is a consumer health survey fielded among thousands of respondents, with the statistical power to extrapolate results nationwide.

The HealthStyles data actually suggest the annual incidence rate could be 600,000 or more, but when combined with two separate CDC studies -- a laboratory diagnostics study and an insurance database chart review which reflect more narrow diagnostic criteria -- the CDC likely selected the more conservative 300,000 rate. None of the studies took into account the high rate of false negatives on standard laboratory testing, which is thought to miss 44% of Lyme cases. (Johnson & Stricker, 2007) False negatives lead to misdiagnoses, long delays in treatment, and an increased chance of chronicity.

Regarding how many people have been diagnosed with Lyme since the start of the epidemic, in 2012, almost 1% of HealthStyles respondents (0.9%) agreed they'd "ever been diagnosed with Lyme disease," suggesting almost 3 million U.S. residents have ever received the diagnosis.

In the 2011 version of the survey, half a percent said "I suffer from chronic Lyme disease," suggesting 1.5 million people may be suffering with a chronic form of Lyme disease, outnumbering the roughly 1.2 million Americans living with HIV infection. The most common symptoms reported by those with chronic Lyme were: fatigue, muscle aches, joint swelling, and numbness/tingling.

It's tempting to combine the 2012 "ever diagnosed" number with the 2011 "chronic Lyme" number to yield a treatment failure rate, however, since the CDC didn't report on the same questions year-over-year, we cannot reliably combine the 2011 and 2012 data. These figures do suggest treatment failure is very common, so let's look at the rate of chronicity illustrated by a different set of HealthStyles questions, then compare that to research from Johns Hopkins University.

Thursday, February 6, 2014

KPFA Drive: Horowitz on KPFA Today at 5PST/8EST

I just received the following from my LLMD about KPFA interviewing Dr. Horowitz today at 5pm PST/8pm EST. Richard Horowitz MD is the author of Why Can't I Get Better?  Donate if you can. Either way, it sounds like a great show to listen to.


KPFA is airing another Lyme disease show tonight interviewing Dr. Richard Horowitz. Dennis wasn't going to air it until next week but was so excited about the pre-recorded interview that he decided to air it early. 

KPFA is in the middle of their fund drive and on the last Lyme show they came out short of their goal of raising $3000 (they only raised $2800). Dennis is really going all out for us dedicating this much time for the series and we need to justify the air time to the general managers and show that we appreciate the coverage and want more.

I know many of us are struggling just to pay for treatment and basic survival but even if people can give $20, $25, $50 or more it will add up. You can also do a monthly payment plan to pay off a larger donation of $100 or more. Or one or more people can band together and offer a matching fund of $800 or $1000 to help encourage others to donate. The donation is tax deductible.

If possible, donate during 5 to 6pm PST (8 to 9pm EST) so that the station knows that you're donating in support of the Lyme series. But you can also donate online or call later and let them know you are donating because of Dennis's coverage of the Lyme series.

You can listen online at: kpfa.org.