For every year that we do not address the problem and find a cure for those who remain ill, the number of people living with Lyme disease increases. Very little research has been conducted regarding how best to treat patients who do not respond to short-term treatment approaches or who are not diagnosed early.

Lyme disease is getting a lot more press and government attention than it did in the past. There’s a good reason for this. The Centers for Disease Control and Prevention revised its estimate of the number of people who contract Lyme annually from 30,000 to 300,000 in 2013.  This change elevated Lyme disease from being seen as a “rare” disease to a common disease.

That’s 6 times more than the annual incidence of HIV/AIDS and about 1 1/2 times the incidence of breast cancer. But the CDC is only talking about INCIDENCE of Lyme disease — the number of new cases each year. What about prevalence of Lyme disease — the number of people who remain ill over time? The number of people living with the disease increases over time based on the percentage of those who contract the disease and remain ill.

The chart below shows Lyme disease prevalence based on the annual incidence of the disease using different assumptions about treatment failure rates. Patients diagnosed and treated early generally respond well to treatment. However, treatment failures ranging from 10-35% have been reported in early disease and higher rates are reported for late disease.

Chronic Lyme Disease is a big problem

Lyme disease prevalence increases each year

Nobody knows the number of patients who continue to remain ill. The National Institute of Health estimates this may be between 10% and 20% of patients diagnosed. Other studies (Aucott and Trieb) suggest the number may be even higher.

Lyme disease prevalence is cumulative and increases each year until patients are either cured or die.

As you can see, add those numbers up over a 20-year period, and you may have over 1 MILLION people living with chronic Lyme disease. This is a huge number of patients, even when compared to the number of people living with HIV/AIDS, which the CDC estimates at 1.2 million. So it’s a big problem.

I addressed the issue of the growing number of Lyme disease cases in a presentation that I did before the American Association for the Advancement of Science.  You can view that video here:

[arve url=”https://youtu.be/fEF8Nu8Bfic” title=”Patient Powered Research by Lorraine Johnson at the AAAS conference”]

Lyme disease prevalence growing over time

Unfortunately, for every year that we do not address the problem and find a cure for those who remain ill, the number of people living with chronic Lyme disease increases. Very little research has been conducted regarding how best to treat patients who do not respond to short-term treatment approaches or who are not diagnosed early.

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Most of the patients in MyLymeData have either late or chronic Lyme disease

MyLymeData was developed to accelerate research in Lyme disease by providing observational data and serving as a research platform for more traditional studies. Most of the patients in MyLymeData (79%) have either late or chronic Lyme disease and report being diagnosed late (70%), when treatment success is much more difficult to achieve. Less than 13% of patients in the registry were diagnosed within the critical first month.

[tweet_box]Most of the patients in MyLymeData (79%) have either late or chronic Lyme disease[/tweet_box]

To reduce the number of patients with late/chronic Lyme disease, we need to diagnose patients early to prevent their disease from progressing. We also need to develop more effective treatments for patients with late/chronic Lyme disease. These are both winnable battles, but to succeed we need to acknowledge and address these issues aggressively.

If you are a patient who is not enrolled in MyLymeData,  please enroll today. If you are a researcher who wants to collaborate with us, please contact me directly.

The MyLymeData Viz Blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymefaces.com. On Twitter, follow her @lymepolicywonk.