A few months ago we put out a survey to the Lyme community. We wanted to gather some insights into the real-world effects of test failure, since we know that false-negative test results are rampant. As of this writing, we've had more than 300 responses. For anyone familiar with the issues surrounding Lyme disease, these survey results will be mostly unsurprising. Here are some of the highlights.
Question Two asked, "How long did it take to get a Lyme disease diagnosis?" What is striking here is that about 50% of respondents said it took five years or more. Nearly 40% suffered more than 10 years before getting a diagnosis. We can't think of any other disease where such an astonishing delay in diagnosis is accepted as the norm.
The next question asked, "How did you obtain a Lyme disease diagnosis?" Since most people test falsely negative on the standard CDC-endorsed test methodology, we wondered how they are ultimately being diagnosed. What stands out here is that roughly 70% were diagnosed by doctors and/or methods outside the mainstream, highlighting the profound failure of Western, for-profit medicine to deliver proper care.
According to the CDC, diagnosis should not depend on laboratory testing alone, and a clinical diagnosis should be made by a physician with testing used as supporting evidence only. However, our survey results seem to indicate a disconnect between the CDC's recommendation and the experience of patients within mainstream medicine. This observation warrants an analysis of how doctors are being educated about Lyme and other tick-borne diseases.
Question 6 went into more detail about the patient experience surrounding initial diagnosis. Every scenario we listed was experienced by more than half of our survey respondents, with "Dismissal of symptoms and/or concerns" coming in at a whopping 89%. Again, we must question how physicians have been so poorly educated about Lyme that nine times out of 10 they are comfortable outright dismissing the possibility of Lyme disease.
Also noteworthy is the response to the last scenario, "Refusal of physician(s) to accept the diagnosis or test results provided by another doctor." Nearly 70% of respondents reported experiencing such mistreatment. Where this has likely played out is in primary care settings when a patient has obtained a Lyme diagnosis from an alternative provider. The primary care provider then may carry out any combination of gaslighting, refusal to treat, blacklisting, dismissal from the practice, etc. Ultimately Lyme patients are commonly refused basic and preventive medical care because they've been forced to seek a diagnosis for their chronic condition from an alternative provider.
Question 7 asked, "What long-term effects have you experienced as a result of false-negative Lyme testing?" Every result here is heartbreaking. Well-known among the Lyme patient community is the alarmingly high suicide rate. A full 70% of our respondents reported experiencing depression and/or suicidality. This should not be surprising in light of the picture being painted of the average Lyme patient: Sick for more than 5 years; unable to get diagnosed; abused by multiple doctors; disbelieved by family, friends, employers; physically limited; financially and emotionally stretched to a breaking point.
The final item we'd like to share is Question 8: "Have you been diagnosed with any of the following conditions since contracting Lyme disease?" Two things stand out: the high rate of cardiac conditions, and the even-higher rate of immune deficiency. Long-term Lyme infection is destroying people's immune systems, and yet, public health agencies and most medical professionals characterize it as easily treated and self-limiting. In reality, Lyme disease is a crisis of immune deficiency whose sufferers have been gaslit since before HIV/AIDS entered public consciousness.
Thank you to all who have responded to this survey. It remains open at https://www.surveymonkey.com/r/JF5LWSJ and we welcome additional responses. If you have any questions please feel free to contact us at firstname.lastname@example.org.