OK heres the letter about Lyme's
Okay, awhile ago we talked about putting together a letter to send to our local and national government officials. I put together this letter so it would be easier for everyone. Please feel free to personalize the letter to correspond with your own story.
In light of recent events with President Bush receiving treatment for Lyme’s Disease, I would like to take the opportunity to plead mine and countless others cases.
I, along with innumerable others, suffer from Lyme Disease. It's a debilitating illness that steals our health and sometimes even our lives. Many of those untreated will suffer chronic debilitating illness. Some unknowingly will pass the disease on to their unborn children.
The average time from infection to diagnosis is 4.7 years. Most are misdiagnosed for years with incurable conditions such as chronic fatigue, fibromyalgia, lupus, multiple sclerosis, Alzheimers or ALS. I can't tell you how many Lyme sufferers I have talked to who have lost their jobs, marriages, financial security, independence and their daily joy of living because of severe degradation of health.
As of yet, there are no reliable tests for Lyme disease. Fewer than 50% of patients diagnosed with Lyme Disease ever remember a tick bite or have the bull's eye rash. Available blood tests yield a high percentage of false negatives due to the cunning nature of the spirochete, which is able to change into a dormant, undetectable cyst form, or hide within white blood cells.
Cases of Lyme Disease have been reported in every state. This is not a disease that is localized in the north-eastern states. The Center of Disease Control (CDC) by its own admittance, methodically underreports Lyme disease and contradicts aggressive treatment. According to the CDC, Lyme borreliosis is the number one vector-borne disease in the country. Statistics from the CDC indicate that there were over 23,000 cases reported in 2005. However, they acknowledge major underreporting, perhaps 10 times higher than their official estimate. In other words, there are almost 250,000 new cases a year and 2 million people in the United States suffering from chronic Lyme disease. Based on the inconsistency between their own clinical findings and that of the CDC, many researchers theorize that Lyme disease rates may be up to 100 times higher than the official CDC numbers. To further complicate matters, the ticks that transmit Lyme also carry other bacteria, and these co-infections appear to be as complex as Lyme and as difficult to diagnose and treat.
Unfortunately, the majority of doctors are not well educated about Lyme Disease and many patients are given substandard treatment and/or treated as hypochondriacs. Each year, thousands are misdiagnosed; many of them told that their symptoms are "all in their heads." I know personally of people who have a positive Western Blot but their doctors will refuse to treat them out of fear of losing their license or being harassed through the legal system. These patients, among many others, are forced to search the country for Lyme Literate Doctors. Because the majority of Lyme Literate Doctor’s do not accept insurance, the patients end up spending thousands of dollars out of pocket for treatment thus creating financial hardships.
Because Lyme Disease costs billions of dollars in medical costs, long-term disability expenses, and lost wages, it is in the best interest of our country to enact legislation that will allow doctors to properly diagnose and administer treatment to Lyme Disease suffers without fear of persecution.