January 2012 - Research Overview

Classic Erythema Migrans (EM) rash. AKA "Bulls Eye" rash.

Over the past month I have poured myself into researching Lyme Disease. The more I researched, the more confused, angry and scared I became. I have learned that for whatever reasons (many can be speculated) our government, political community, insurance and pharma industries do not want to admit that Chronic Lyme Disease exists despite research, peer reviewed articles and clinical practice that prove otherwise. Instead, they refer to it as Post Lyme Disease Syndrome and state that only 10 - 20% of people treated with antibiotics for 2-4 weeks will have these lingering symptoms which is NOT believed to be a result of the continued presence of the Borrelia Burgdorferi organism.  Let's not forget that these comments are based on the theory that people who have been bitten by an infectious tick get immediate treatment. The CDCs states that 70 - 80% of people infected with the Lyme organism develop the Bulls Eye rash called Erythema Migrans (EM) whereas the Lyme Specialist and ILADS organization believe that this only occurs about 50% of the time (if that much) and that many are not even aware they have been bitten by a tick at all! The reason for this huge discrepancy is based on the the different beliefs in what the diagnostic criteria should be and the CDCs more stringent guidelines for diagnosis obviously results in fewer cases being reported. Click here to read ILADS position statement.

And hence, the battle of making medical therapy treatment available and a covered insurance benefit!

I have learned that, unfortunately, many physicians who believe that Chronic Lyme does exist and who have chosen to treat their patients (with great success) have been scrutinized and ostracized by their peers within the medical community and have actually gone on to have their medical license revoked leaving the physicians without a practice and hundreds and hundreds of people without access to the medical care and treatment necessary to overcome the disease!

I don't know if I should cry or scream. Actually, I've done both!

I have also learned that the standard laboratories such as Labcorp, Quest, etc have a very high incidence of false negatives for the Western Blot and ELISA tests. Here is a link that I feel does a good job of describing why the testing is so unreliable. (canlyme.com). There are just a few laboratories within the United States that specialize in tick-borne diseases. Igenex and Clongen are both reputable laboratories used by Lyme Specialists (LLMD- Lyme Literate MDs). Unfortunately, they do not accept insurance and these tests can be expensive. And, although they have a much higher percentage of overall accuracy, they too can fall short of detecting the antibody bands in this complex disease process. If you are going to be tested for Lyme Disease, don't waste your time on getting the test done through your local lab. You MUST use one of the labs which specialize in tick-borne diseases.

I am ready to ask my doctor to repeat my Western Blot test through Igenex!