Sinus facts and the shocking politics of Lyme Disease

I'm on a personal quest to learn what is wrong with my body. It hasn't been right since Fall of 2005, when I started experiencing severe muscle soreness in my back and neck, without any significant injury or trauma. Other ailments followed, including chronic sinus infections, depression and other neat things that led to lots of drugs and doctor's visits. A little more than a year after I started feeling off, I illustrated my frustrations with sickness and doctors in a sculpture entitled "Decrepit at 21" as part of an art show at Vanderbilt.


It has been five years since then and I've been thinking: why not make some more cathartic chronic pain art?

This morning I went to the Boston Library at Copley (it's amazing!) and spent some time looking at images of the human body. In an anatomy book called - no joke- Gray's Anotomy- I learned a about back muscles and the respiratory system. Did you know we all have 4 different kinds of sinuses? And they develop in the 6-8 years after puberty to change the shape of your face?


One kind (ethmoidal) includes multiple cavities, ranging from 7 to 18 on each side. Drainage in the maxillary sinuses, those under your eyeballs, is hindered by their structure and placement, making them the most often chronically infected. No one seems sure what sinuses are for but it is thought that they give some resonance to the voice and help shape our faces. Thanks evolution. You really helped us out this time. Gotta love having green snot trapped in your face.


With help from my Mom I've also been researching Lyme Disease. Essentially all my symptoms (especially fatigue, weakness, muscle and joint pain) could be attributed to the disease. Given all the time I spent on horse farms, it's not unlikely that I was exposed, perhaps multiple times. I've learned that it is very difficult to get diagnosed and treated. People often have Lyme for years before they get diagnosed and even then, it is very difficult to get proper treatment and/or insurance coverage.

Here's why, according to recent testimony by Lyme Disease Association before the Pennsylvania House Majority Policy Committee:

1.The Center for Disease Control (CDC) criteria, what doctors use to diagnose and treat lyme, was originally created for surveillance purposes only. Still, if patients don't meet the criteria or test positive, its very hard for them to find doctors that will make a clinical diagnosis without laboratory backup. I've seen this bullshit first hand. Doctors have told me that if I never saw a bull's eye rash on my body, I probably haven't been exposed. It turns out the rashes occur in less than 50% of intefected individuals. Thanks Doc.

2. The blood test for lyme is only 40-60% accurate.

3. The Infectious Disease Society of America (IDSA) treatment guidelines state that there is no chronic lyme disease, that doctors shouldn't use their own discretion, that certain antibiotics shouldn't be used, and that long term treatment for the illness is not advisable. This is totally dumb since there are documented cases of chronic lyme in 65 countries and all 50 states. And, studies have shown that patients with untreated lyme disease "suffer a degree of disability equal to that of patients with congestive heart failure."

4. Despite a disclaimer in the IDSA guidelines stating that they are not mandatory, doctors have been proscuted for not following them. Furthermore, insurance companies have threatened to drop doctors from their plans if they prescribe antibiotics for lyme. Like abuse of tort law, this scares the bejesus out of most doctors and they continue to follow the bogus guidelines. The ISDA even opposes Federal legislation allocating funds for much needed Lyme research. Smell a rat anyone?

The problem has become so widespread that California, Connecticut and Rhode Island have passed legislation to protect doctors who use their own discretion in identifying and treating Lyme. Minnesota, Pennsylvania and Massachusetts have introduced legislation.

A new documentary made in 2008 called "Under Our Skin" seeks to educate the general public on the disease, prevention and barriers to quelling what has become an epidemic. Lyme increased 250% nationwide between 1993 and 2008 and some say its bigger than HIV. Whoa.