The High Cost of Being Sick

The Center for Disease Control (CDC) and the Infectious Disease Society of America (IDSA) govern the treatment protocols for Infectious Disease. Because neither one of these organizations recognizes Chronic Lyme Disease, they offer no treatment beyond a few months of antibiotics for Lyme Disease. To them it doesn't exist. That, coupled along with the fact that Lyme Disease is a mult-systemic disease causing patients to present symptoms in a myriad of ways, many many patients like myself, go mis or undiagnosed for sometimes years. If you factor in that the standard CDC Western Blot Lyme Test is only accurate about 50% of the time it becomes clearer why people are sick without a diagnosis.

There is a group of courageous clinicians who have independently taken on Chronic Lyme Disease. They belong to an organization called the International Lyme And Associated Disease Society (ILADS). Because again, neither the CDC or the IDSA are involved, these physicians use treatments which are completely experimental in nature and are based on past successes with medications and personal perferences. It leaves alot to interpretation. They use terms, like "Well, I guess we could try Amoxicillin for a while" or "I've had pretty good results with Biaxin".

When I personally heard words like that for the the first time, I knew I was in unfamiliar territory. I was raised in an arena where if you had a sickness you went to the doctor, they gave you the medication and viola....you were better. End of sickness...life goes on. In these appointments, it's clear that nothing is clear. Lyme Literate MD's move antibiotics around like chess pieces, trying this one and adding on that one, and seeing if there is any result. If you have an herx, and feel worse, they are pleased, but if you don't feel worse, that doesn't mean the drug isn't working for you either. It's a maze, and if you happen to find your way out of it after walking around and around in circles for a while, you are one of the few and very lucky ones.

In many ways I am one of the lucky ones. My husband's insurance pays 60% of my medical visits and most of the medications are covered by a copay. Most LLMD's have patients on a multitude of vitamins and supplement to support their other organs during treatment, there is alot of out of pocket in that regard. The bulk of patients are not in my situation. Many do not have out of network coverage as part of their health care insurance. Some of the medications may be covered by a copay but not all, and because so many people have been to countless doctors in an effort to find out what was really wrong with them, they have already spent a fortune. The cost of IV therapy for Lyme Disease is staggering. If insurance companies added up what they have spent on patients trying to chase down a Lyme diagnosis, they would be blown away by the unnecessary money spent, which is probably literally in the millions.

We need a cure. But before we can get a cure, we need funded reserach and adequate testing. There is no way out of this maze without those components. There is a film out, which I recommend to anyone who has interest in this disease. It serves are a primer on the layers and controversy surrounding Chronic Lyme. It's called Under Our Skin, and can be found at any library or video store.

The controvery rages on.