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.

The 2012 HealthStyles survey asked those ever diagnosed with Lyme disease (n= 43) how long it took to recover. Results indicate 67% recovered in less than six months, suggestive of a 33% treatment failure rate. Since this is a tiny sample size, we report these figures with caution. It is notable, however, that this figure loosely matches findings from gold-standard prospective cohort research from Johns Hopkins University researcher John Aucott, MD. Aucott found that among promptly and fully treated patients, 36 to 39% will suffer symptoms post-treatment. (Aucott et al, 2013a; Aucott et al, 2013b) Examining a subset of those who suffer ongoing symptoms post-treatment, 12% of respondents in the HealthStyles survey said they have never recovered, while Aucott found that 11% of his study patients had "functional impact," that is, they are disabled by post-treatment symptoms.

Regarding the chances someone will become chronic, the state of residence matters greatly. Around 70% of people who were ever diagnosed with Lyme disease live in the classic endemic states of the Northeast, Wisconsin and Minnesota. However, only 10% of those people are chronic. Put another way, 90% of the people who become chronic live outside the endemic states. So, where is the chronic form of Lyme a bigger problem, Connecticut or California? The answer depends on the absolute number of cases in each state, but the CDC did not report state-by-state data. Due to greater awareness in the endemic states, it's possible patients in those areas receive more prompt treatment than those in non-endemic areas, leading to lower levels of treatment failure.

Demographically, those who are non-white, male, or younger have a higher chance of becoming chronic. The average chronic Lyme patient is only 30 years old. Fifty-eight percent of those with chronic Lyme reported being unemployed, compared to 40% of all survey respondents (average age: 51). The disproportionately large number of young, unemployed people with chronic Lyme should set off national economic alarms regarding lost productivity and the societal cost of Lyme disease disability.

Finally, few issues are more contentious in Lyme disease than whether or not a patient should be treated with antibiotics for longer than four weeks. Among the HealthStyles respondents, more than half were treated longer than four weeks, contrary to the dominant treatment guidelines published by the Infectious Diseases Society of America. Most notable is that patients in the highly endemic states (the Northeast, Wisconsin, and Minnesota) were more likely to receive longer-term treatment than patients in less endemic states, another factor that may account for the lower rate of chronicity in the endemic states.

With 300,000 new cases per year, and more than a third of patients failing treatment, these data clearly show we are creating a huge public health burden. Based on Aucott's research showing 11% will be disabled after standard treatment, Lyme disease is likely generating at least 30,000 new disabilities each year, which would average $14,400 per person in Social Security Disability payments. If every newly disabled chronic Lyme patient started receiving disability, this would amount to an additional $432 million per year, a significant chunk of the almost $10 billion in total annual Social Security Disability payments.

In 2014, the NIH expects to fund $21 million in Lyme disease research, which amounts to only $70 per new case, and represents less than half a percent of the NIH's 2014 infectious diseases budget. For comparison, AIDS incidence is 50,000 new cases per year and accounts for three-fifths of the $5 billion NIH infectious diseases budget, or $60,000 per new case. If NIH won't increase the Lyme disease research budget, the Social Security Administration should be very interested in putting some pressure on them to do so. We can't afford not to put more money into research for a disabling disease that should be entirely preventable.

Related article: Lyme Disease May Cost $90 Billion Per Year


Alix Mayer, MBA worked in corporate research for Fortune 100 companies until becoming disabled by late Lyme disease. She is happy to report she is substantially recovered. She is featured along with Mariel Hemingway and Gabby Reese in an upcoming documentary, Blood Berries or Butter about health mavericks who didn't settle for the top-down approach to healing. Her story is featured in Gifted and Sick, by A.M. Runyan, now available on Kindle. She is co-authoring an academic book on Lyme disease and works as a health coach and consultant to non-profits. Contact Alix: spirochicks@gmail.com


Anonymous said...

Taking the figure of 300,000 diagnosed, this represents about 0.1% of the US
population. In comparison, 0.1% of the Australian population (22m) is approximately 22,000. Of course this is an annual diagnosis figure, so over 10 years it equates to about 220,000 new Lyme disease diagnoses.

There are a number of overseas studies showing that the frequency of serum samples positive for Lyme disease using commercial antibody tests is about 3%. This equates to 660,000 Australians possibly having had contact with Lyme disease organisms.

Anonymous said...

With the positive tests results of around 3% published in some tests then this would be in the US around 300,000,000 x3/100 which would be 9 million cases
Which is no small beer

Alix said...

Thanks for sharing the Australia numbers. I know there is even more denial of Lyme in Australia than there is here in the US. We do need even bigger studies - with different methodology - to corroborate the HealthStyles study from the CDC.

Unknown said...

The nine million is probably more accurate. I live I. The northeast of Pa. and had th rash in 1972. Have NEVER tested positive and may never u til my body is used for research after I am dead. The doctors here I the Poconos won't even acknowledge lyme after you try explaining your history.

Anonymous said...

Call Ruth Kriz in Virginia, Poconos Paula. She can help. I'm in Ohio (visited the Poconos last week and was doing treetop adventure at CBK...I was nearly dead & immobile before I saw Ruth two years ago)

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Unknown said...

You can buy a microscope in e-bay and prick your finger. You might be surprised to see spirochetes. A French man was tested negative each time so he decided to buy a microscope and saw the spirochetes swimming around!