Tom Fox welcomes back Scott Endicott and Ben Locwin on this episode of the Understanding Lyme Disease Podcast Series. Scott – who has had Lyme disease – is a clinical researcher, and Ben deals with Healthcare Policy at Maven. In this episode, they look at the changes that occur in the body when you contract Lyme disease.
 

 
Testing For Lyme Disease
There are blood tests that are carried out to determine whether a patient has Lyme disease, and it’s a two step process. The first half of the test is called the Eliza test which detects antibodies the human body may or may not be producing against the organism that causes Lyme disease. The second half of the blood tests is called the Western blot which looks at antibodies to specific proteins in the Borrelia Burgdorferi organism. These tests are the original diagnostic tests and have been used since the beginning. 
 
The Problems with Diagnosis
Scott explains that PCR testing has come about after these tests and is there to identify the infecting agent. The challenge with PCR testing, however, is the way that the Borrelia Burgdorferi organism actually behaves in real time. The challenge with the Eliza and Western blot as well is that both tests can give false negatives for weeks because the organism has a way of mutating and masking itself. Diagnosis has been dependent on the primary symptom of Lyme disease which is the bullseye rash, a symptom only 30% of patients have. This makes it challenging and confusing for these patients. Clinicians are being given a primary symptom that only one third of patients experience. “There is a real disparity there with as far as how clinicians view this and very often…they’ll basically look at it and say, ‘Well if it’s not a rash, then I’m not going to treat you at this point,’” Scott remarks. Infectious disease experts will advise patients to treat with Doxycycline, and essentially hope for the best.
 
Dilemma of Diagnosis
With a disease that mutates, there is an urgent need to identify and treat it quickly. Infectious experts look at it as a challenge to diagnostic criteria as opposed to treating prophylactically and leave details for later. This ends up putting patients in a bind between standard medical treatment and other unconventional methods. Many Lyme disease clinicians are Lyme disease sufferers themselves, and so are forced to act outside of accepted protocols in order to properly address symptoms.
 
Resources
Scott Endicott | LinkedIn
Ben Locwin | LinkedIn | Twitter