Misdiagnosed for Years
Sickest Lyme patients can have negative test results
By Sarah Blanton
I am a chronic Lyme patient who lived in Oregon for about 20 years. I disagree with Sarah Hendrickson, M.D., in her Viewpoint, “Lyme Disease Rare” (1/28). I have researched Lyme for over five years since my diagnosis Many medical doctors perpetuate misinformation about Lyme disease, because they are frankly misinformed. This is a tragedy, because so many new Lyme patients may spend years of valuable time and money trying to get diagnosed
Dr. Hendrickson claims that doctors who follow the standard of care were being harassed. Most Lyme patients are too sick to harass doctors. I can tell you that many Lyme-literate M.D.s have been harassed, lost their licenses and spent millions to fight the court system for the right to treat their patients as they saw fit. Joseph Jemsek M.D, and Joseph Burascano. M.D., to name a few. A documentary on the subject called Under Our Skin gives the details .
I was plagued by chronic health problems for years and spent $10,000.00 out of pocket going from one practitioner to another with no answers. I finally moved to Alaska and found an M.D. who recognized my symptoms put me on a short treatment plan before doing a Western Blot test through Igenex labs, and was diagnosed positive through this test. I was one of the lucky few that had a positive diagnosis via testing.
As of yet, there is not an accurate test to diagnose Lyme, therefore some of the sickest patients may have a false negative test. The reason for this is that Lyme compromises the immune system, and since the tests are based on the presence of antibodies in the blood the sickest people quit making antibodies to fight the disease and therefore have a false negative test.
According to statistics, the actual incidence of Lyme disease in the U.S. is 107,961. These are only the reported cases; there could be as many as 250,000 new cases each year in the U.S. Statistics are based on those who have a positive test. Lyme is also known as the great imitator, so many people with neurological problems may get misdiagnosed with lupus, fibromyalgia, chronic fatigue, Parkinson’s, MS, Alzheimer’s, arthritis etc. Because of this fact many patients go from doctor to doctor and are misdiagnosed for years. Once Lyme disease goes into the chronic stage, it is difficult to treat and can take up to two years of antibiotic therapy at a cost of about $100,000 annually for treatment.
It is no wonder this disease is steeped in controversy. What insurance plan wants to pay this kind of money to treat patients?
The IDSA guidelines say that Lyme is cured with a six-week course of antibiotics, and that any unresolved symptoms is called post-Lyme syndrome. What actually happens is that the Lyme spirochete senses when it is under attack and will evade the immune system and treatment by going into a cyst or the L form of the disease. This is a smart disease that is good at evading treatment Chronic Lyme patients who have been given a short course of antibiotics find that they actually get worse because the Lyme goes into its L form and when the coast is clear the Spirochetes come out and may have multiplied up to four times while in this form.
Most doctors use the IDSA guidelines in the treatment of Lyme and these guidelines are seriously flawed. The IDSA is steeped in controversy over conflicts of interest and Connecticut Attorney General Blumenthal launched an investigation into the IDSA board. The following web link gives the whole story: http://wkly.ws/9l
Sarah Blanton currently lives in Anchorage, Alaska.