In January 2009, I began feeling fatigue and aches that seemed to be beyond the common flu. A few months later, I blacked out at work and was in so much pain I could barely get out of bed. For the next nine months, I saw over 10 specialists in Boston, including the hospital's top doctors. After 90 pages of blood tests, CT scans, endoscopies, colonoscopies, biopsies, MRIs and any other test you can think of, the doctors remained clueless. The symptoms continued to progress and I started noticing new ones, including cognitive difficulties (trouble reading and remembering, losing short-term memory, mixing up phone numbers and addresses, and a few times forgetting which apartment I lived in); crippling bone, muscle and joint pain; constant headaches, including migraines; weight loss of 25 pounds; extreme fatigue; insomnia; hallucinations; and many others. There were days when I was not sure that I would survive through the night.
Initially thinking of Celiac disease, with the increased symptoms I began to suspect Lyme (which I had when I was six years old living on Long Island). At this time I did not know the political chaos surrounding this disease. When I mentioned Lyme to a doctor, it looked as if I had suggesting drinking Satan's potion to cure myself. Doctors would stammer, "It's definitely not Lyme, trust me," and "Maybe it's HIV. Let's check again [for the fourth time].” My primary care told me that it was all in my head; that I should get more sleep and “stop complaining about the pain.” He said I would never find a cure to an imaginary illness so I should learn to deal with it and stop making it worse than it already was. I left each doctor's office in tears of frustration, pain and anger. How could it be that these world-class doctors would refuse to test for, or even consider, Lyme disease? Then I learned the true politics of Lyme disease. (See Information Box)
Lyme disease is an epidemic in this country, surpassing HIV to become the number two infectious disease our country currently faces. This is not limited to the northeast as cases have sprung up all over the east and west coasts and are spreading inland. Yet, due to the corrupt IDSA guidelines, doctors are too scared to diagnose Lyme disease and insurance companies are all too quick to deny any payments related to this "nonexistent" illness. Lyme patients have bankrupted themselves in desperate searches for treatments, usually becoming increasingly sick and sometimes ending in death. Meanwhile, Lyme-literate physicians such as Dr. Joseph Jemsek, previously of North Carolina, struggle to treat patients. Dr. Jemsek was sued by BlueCross BlueShield of North Carolina for $100 million since he refused to follow the IDSA guidelines. He initially lost the case and his license to practice medicine in North Carolina was suspended, forcing him to relocate to South Carolina and then Washington, DC.
This is an unfortunate, but quite true (trust me, I'm living it along with around 300,000 other people since the CDC estimates of 30,000 patients of this "non-existent illness are assumed to be at around 10%) story of corruption, deceit and death. This is a story which needs to be exposed and I need your help in doing so. I have lost nearly everything to this disease: my apartment, my job, my friends, my money, my independence, and after two years, nearly my life. But it's time for the suffering of Chronic Lyme patients around the United States to end.
