I have heard people who have Lyme disease compare it to AIDS in the 1980s. Little was known or understood about AIDS then, even by the medical professionals. The comparisons are accurate. The ignorance has allowed this disease to spread, and many people are misdiagnosed, left untreated, or will die of this disease. People need to be more informed of the danger of Lyme disease, so that they can protect themselves. Most do not know the danger that this small tick carries or devastation that it can cause in your life. I certainly did not.
I remember the days when people were demonstrating in peaceful protests called ACT UP for AIDS in the 80s. Similar demonstrations are being planned this May for Lyme disease. Many people who are well enough to demonstrate are going, along with their families to demonstrate for Lyme in Arlington, Virginia in what is being called the May Day project. People have even been creating Lyme quilts, similar to the AIDS quilts that traveled around the United States to raise awareness and support for AIDS research.
Many Lyme disease patients lose their jobs, homes, marriages, life savings, and their ability to work and take care of themselves. I have often wondered how many people are suffering from Lyme disease who do not know that they have it. How many were told that they had arthritis or it was all in their head? What happens to those people?
Lyme patients and their families have started letter writing campaigns to doctors, health insurance companies, and politicians. Lyme treatment is being denied by health care providers and insurers because it is not recognized as a legitimate disease. Many doctors will not prescribe more than a 2 week supply of antibiotics because that is what the insurance will cover for Lyme disease, even when it has reached the tertiary stage.