Lyme Disease: Your Tests and Recovery as Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Most people with Lyme disease recover after a course of antibiotics. Some do not: fatigue, joint pain and trouble concentrating can last months or longer, and what causes that, and what helps, is still debated. The answers depend on detailed records of how the illness started, which tests were done when, what treatment was given, and how recovery went. People who lived through it hold that record.

How many people it affects

In the United States, the CDC notes that an estimate using insurance claims suggests 476,000 people are treated for Lyme disease each year. Worldwide, a meta-analysis found that 14.5% of people tested carry antibodies from a past infection, which shows exposure rather than illness.

The records worth keeping

NICE's guideline on Lyme disease describes the tests that leave records:

• An ELISA blood test, testing for both IgM and IgG antibodies, often while treatment starts.
• A repeat ELISA 4 to 6 weeks after the first test if it was done early and came back negative.
• An immunoblot test if the ELISA is positive or equivocal.
• Specialist tests where symptoms persist, such as synovial fluid or cerebrospinal fluid analysis.

A photo of the rash, if you took one, and your own diary of symptoms after treatment are among the most useful records there are. If you do not have your test results, ask your practice for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete Lyme disease story with the records the guideline lists comes to about $40 per licence on the benchmark today, and about $199 per licence with 60 days of symptom diary entries, because a day-by-day record of recovery is evidence research rarely gets. Every line and its source is on the Lyme disease page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add test results, letters and pages of a symptom diary as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.