Lyme Information from the MyLymeData Site Part 1 of 2
MyLymeData is a patient registry and research platform launched by www.LymeDisease.org in 2015 to allow patients to privately pool information about their Lyme disease experiences. Treatments are most successful when Lyme disease is diagnosed and treated early, when most patients can be restored to health. However, many still remain ill after treatment, or do not get diagnosed and treated in the early phase of the illness. Protocols developed for the acute illness do not appear to be effective for long-term Lyme disease.
Unfortunately, there has been little research into how to help people with persistent Lyme symptoms. Some small trials took place 20 years ago, with nothing since. More than 12,000 patients have enrolled in MyLymeData, providing millions of data points on Lyme disease demographics, diagnosis, symptoms, lab test, treatments, and more.
74% reported early symptoms of the disease, but only 34% had the distinctive rash commonly relied on by physicians for diagnosis. More common early symptoms were flu-like symptoms, and severe headache or stiff neck.
72% of patients with chronic Lyme disease were initially misdiagnosed with another condition. Patients without the distinctive rash are more likely to be misdiagnosed. In addition 60% reported being diagnosed with an additional tick-borne infection, which may increase the likelihood of developing chronic Lyme disease.
Fewer than 12% of patients were diagnosed within the critical first month, and 70% were not diagnosed until 6 or more months after the onset of their symptoms. Most patients who are diagnosed early respond well to short-term antibiotic and other treatment protocols.
Terry Pfau DO, HMD