Lyme Disease is endemic in this area. The CDC says, “Lyme disease is hard to catch, and easy to treat.” From my perspective, that’s not true.
Everyone knows somebody who has had Lyme disease or continues to have symptoms years later. Why do some people never get better? The truth lies in the diagnosis.
The test at the local lab itself is insensitive and inadequate. It doesn’t test for multiple strains of Borrelia burgdorferi (cause of Lyme disease). Because most ticks carry more than one pathogen, it’s possible you also have Babesia, Bartonella, Ehrlicia, Rickettsia (Rocky Mountain spotted Fever). 21 days of doxycycline only covers you if you catch it early, before any symptoms. But it doesn’t treat the co-infections.
Having lived through this myself, I understand the complexity of the disease. I find that Chronic Active Lyme Disease is not a diagnosis recognized by the CDC or the IDSA (Infectious Disease Society of America). There are no insurance codes for that diagnosis.
Dr. Richard Horowitz, a forerunner of the disease, called it Multiple Systemic Infectious Disease Syndrome. There is controversy over the diagnosis, the testing and the treatment. In other words, there are two Standards of Care: one that insists that you know if you got a tick bite, AND get a red ring around the bite, AND a positive test; and the other is based more on your symptoms, more accurate testing, and prolonged treatment to cover all the co-infections.
Besides the CDC and the IDSA, there is a group of practitioners who actually are aware of how prevalent and how serious this disease can be. This group is called ILADS (International Lyme and Associated Diseases Society). They know from experience and science that these patients need a thorough workup for co-infections and opportunistic Infections from multiple laboratories that are more sensitive and reliable than the local labs.
After the diagnoses, which are usually more than one pathogen, a treatment protocol is developed that will eventually treat each one. The goal of treatment is to get 100% of function back. Depending on how long the patient has had this, and how they respond to treatment, most patients see a lot of improvement.