Lyme Disease Test

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Lyme Disease is spread by ticks and can be difficult to diagnose because symptoms mimic other illnesses. The group Focus on Lyme is funding research at the Translational Genomics Research Institute in Phoenix to increase the speed and accuracy of Lyme Disease diagnosis with a test called LymeSeq. Tammy Crawford, the executive director of Focus on Lyme, will tell us about the new test.

TED SIMONS: LYME DISEASE IS NOTORIOUSLY DIFFICULT TO DIAGNOSE, BUT THE GROUP FOCUS ON-LINE IS FUNDING RESEARCH AT THE TRANSLATIONAL GENOMICS INSTITUTE IN PHOENIX ON A NEW TEST CALLLED LYME SEEK. THE EXECUTIVE DIRECTOR OF FOCUS JOINS US HERE. LET'S SET PARAMETERS. WHAT EXACTLY IS LYME DISEASE?

TAMMY CRAWFORD: LYME DISEASE IS A TICK BORNE ILLNESS TRANSFERRED FROM A TICK TO A HUMAN. AND IN MOST CASES, IF IT'S CAUGHT EARLY, KIT BE NO WORSE THAN HAVING FLU SYMPTOMS, FEVER, RASH, YOU KNOW, AND CAN BE TREATED WITH A ANTIBIOTIC IF CAUGHT EARLY. BUT CURRENTLY LYME DISEASE IS THE NUMBER ONE BORNE DISEASE, NUMBER TWO INFECTIOUS DISEASE IN THE UNITED STATES. 300,000 CASES DOCUMENTED BY THE CDC. AND 25% OF THOSE CASES END UP WITH LONG-TERM DEBILITATING SYMPTOMS.

TED SIMONS: NOW, IS LYME DISEASE PREVALENT IN ARIZONA?

WE HAVE -- THERE'S SUPPORT GROUPS FOR LYME DISEASE IN ALL 50 STATES. AND THE STUDIES HAVE NOT REALLY BEEN DONE TO DETERMINE WHICH AREAS OF ARIZONA HAVE TICKS THAT COULD BE CARRYING THE BACTERIA OF LYME. BUT WE KNOW THAT THERE ARE MANY PEOPLE WHO CLAIM THEY DID GET LYME DISEASE IN THE STATE AND MORE STUDIES NEED TO BE FUNDED TO PROVE WHETHER WHAT WE HAVE HERE.

TED SIMONS: YOU KNOW, YOU HEAR ABOUT THE NORTHEAST ALL THE TIME. YEAH, IT'S ENDEMIC. THE EPICENTER THERE. BUT I NEVER HEARD OF IT BEING A PROBLEM. BUT YOU HAVE WOODS IN ARIZONA. YOU GO TO THE NORTH COUNTRY, YOU HAVE ALL SORTS OF, I WOULD IMAGINE, TICKS THERE.

TAMMY CRAWFORD: A BIG OUTBREAK NEAR THE GRAND CANYON WHERE SEVEN PEOPLE WERE DIAGNOSED WITH A FORM OF IT WHICH IS A RELAPSING FEVER THAT CAN ACTUALLY BE FATAL. SO IT'S HERE.

TED SIMONS: WHY IS IT SO HARD TO DIAGNOSE? IT'S OFTEN UNDIAGNOSED. IT'S OFTEN MISDIAGNOSED? WHY?

TAMMY CRAWFORD: IN MY SITUATION, IT WAS MY DAUGHTER WHO CONTRACTED LYME DISEASE AND OUR PERSONAL SITUATION SORT OF MIRRORS WHAT MOST PEOPLE GO THROUGH WHICH IS YOU HAVE THIS ACTIVE HEALTHY PERSON WHO ALL OF A SUDDEN SHOWS UP WITH THESE DEBILITATING SYMPTOMS AND ONE OF THE PROBLEMS IS LYME DISEASE CAN ATTACK THE IMMUNE SYSTEM AND DEPRESS THE IMMUNE SYSTEM BUT OUR EXISTING TESTS ONLY REALLY MEASURE YOUR SYSTEM'S RESPONSE TO THE BACTERIA. SO FOR SOME REASON YOU'RE NOT RESPONDING THE WAY YOU SHOULD, IT'S DIFFICULT TO PICK UP THE BACTERIA AND THE EXISTING BLOOD TEST.

TED SIMONS: THE DIAGNOSIS OF EXCLUSION MOSTLY?

TAMMY CRAWFORD: IT IS NOW. IT CAN BE A CLINICAL DIAGNOSIS. THEY WILL RULE IT OUT INSTEAD OF TESTING FOR EVERYTHING UNDER THE SUN WHICH CAN BE PAINFUL. WHICH ALSO HAPPENED TO MY DAUGHTER. AT 19, SHE HAD AN MRI, MUSCLE BIOPSY, SPINAL TAP, AND TONS OF BLOODWORK TESTING FOR THINGS LIKE MS AND LUPUS AND RHEUMATOID ARTHRITIS AND OFTEN LYME DISEASE IS MISDIAGNOSED FOR MANY OF THESE DISEASES AND WE DON'T HAVE A GOOD WAY TO RULE IT OUT.

TED SIMONS: ENTER LYME SEEK. WHAT IS LYME SEEK AND HOW IS THAT GOING TO HELP THE SITUATION?

TAMMY CRAWFORD: WE PARTNERED WITH TRANSLATIONAL GENOMICS. THEY HAVE AN INFECTIOUS DISEASE DIVISION AT NAU. WE ARE RAISING FUNDS AND THEY'RE CREATING -- HAVE CREATED AN SA, A TEST THAT'S GOING TO LOOK AT THE BACTERIA IN YOUR BLOOD, NOT IN YOUR IMMUNE SYSTEMS RESPONSE, BUT THE ACTUAL BACTERIA LEVELS IN YOUR BLOOD. NOT ONLY FROM LYME DISEASE BUT ALSO MANY CO-INFECTIONS WHICH COME WITH LYME DISEASE IN THE BLOOD.

TED SIMONS: IT SOUNDS LIKE IT MAYBE TARGETS AND AMPLIFIES THE DNA OF THIS STUFF. IS THAT RELATIVELY --

TAMMY CRAWFORD: AND WE'RE LOOKING AT RNA, WHICH IS 1 TO 10,000 TIMES MORE ACCURATE THAT DNA. SO, WE'RE LOOKING FOR A SPECIFIC, ACCURATE, DIAGNOSTIC TEST THAT WILL HELP PEOPLE NOT ONLY KNOW IF THEY HAVE LYME DISEASE, BUT ALSO IF THE TREATMENTS ARE HELPING THEM.

TED SIMONS: I WAS GOING TO SAY, WILL THIS TRANSFER OVER TO TREATMENTS?

TAMMY CRAWFORD: WE'RE HOPING. IT'S -- WE'RE IN THE EARLY STAGES. THE TEST IS BEING AS WE SPEAK, IT'S BEING FINE TUNED AND IN A VERY SHORT PERIOD OF TIME, WE'LL BEGIN RUNNING HUMAN BLOOD SAMPLES MOSTLY FROM BIOBANKS, BIODEPOSITORIES, AND WE'LL MOVE TO HUMAN STUDIES IN THE NEXT 12 TO 15 MONTHS.

TED SIMONS: HAVE THERE BEEN HUMAN STUDIES SO FAR?

TAMMY CRAWFORD: YES. AND WE HAVE HAD VERY GOOD RESULTS ON HUMAN BLOOD SO FAR.

TED SIMONS: GOOD RESULTS. THE TESTING SOUNDS LIKE IT'S MULTI-TIERED. AS YOU MENTIONED, AFTER YOU GET PAST THE EX-CLUES PART, YOU DO THE ACTUAL TESTING, THAT SOUNDS LIKE AN ORDEAL IN ITSELF.

TAMMY CRAWFORD: THE TEST IS LESS THAN 50% ACCURATE. NO BETTER THAN A COIN TOSS. SO YOU'RE LUCKY, AS MY DAUGHTER WAS FORTUNATE TO GET A VERY POSITIVE LYME TEST. BUT EVEN SO, MANY PHYSICIANS DON'T RECOGNIZE THAT LYME -- THAT CLINIC LYME EXISTS. THAT WAS OUR CASE. WE WENT TO AN INFECTIOUS DISEASE SPECIALIST THAT TOLD US IT DIDN'T EXIST AND HERE WE HAVE ALL OF THE SYMPTOMS AND SHE'S VERY ILL. WE'RE HOPING THIS TEST WILL HELP THE PHYSICIANS AS WELL. IF YOU'RE A DOCTOR AND SOMEONE COMES IN WITH ALL OF THE CRAZY SYMPTOMS AND YOU DON'T BELIEVE THE EXISTING TEST THAT'S OUT THERE, IT'S DIFFICULT TO JUSTIFY TREATING THEM WITH TONS OF ANTIBIOTICS OR ANYTHING REALLY.

TED SIMONS: ARE THERE SOME DOCTORS THAT DON'T BELIEVE LYME DISEASE EXISTS.

TAMMY CRAWFORD: I THINK EVERYONE BELIEVES ACUTE LYME EXISTS. THE CHRONIC SYMPTOMS, MANY THINK IT'S A POSTLYME SYNDROME, AN AUTOIMMUNE RESPONSE TO HAVING LYME IN THE FIRST PLACE? WE DON'T BELIEVE THAT. WE THINK YOU'RE GOING TO FIND REMNANTS OF THE BACTERIA IN PEOPLE'S BLOOD.

TED SIMONS: BEFORE YOU GO, WHAT IS FOCUS ON LYME?

TAMMY CRAWFORD: IT'S THE NONPROFIT THAT WE ORGANIZED TO RAISE MONEY, TO FUND NOT ONLY THIS DIAGNOSTIC TEST BUT ALSO TREATMENT OPTIONS. SO IT'S JUST A METHOD TO REALLY PUSH THE SCIENCE FORWARD FOR BOTH PHYSICIANS AND FAMILIES AND PEOPLE SUFFERING FROM LYME DISEASE.

TED SIMONS: WHERE DO WE GO FROM HERE? WHAT'S NEXT?

TAMMY CRAWFORD: IF YOU WOULD LIKE TO PARTICIPATE AND HELP US, YOU CAN GO TO FOCUSONLYME.ORG. ALL OF THE INFORMATION, THE STORY IS ON THERE. HOW TO DONATE. WE'RE TRYING TO RAISE $200,000 TO GET TO THE POINT WHERE WE'LL BE ABLE TO MOVE TO A BIGGER HUMAN CLINICAL STUDY. SO THAT'S WHERE WE ARE.

TED SIMONS: ALL RIGHT. GOOD LUCK WITH THAT. BEST OF LUCK TO YOUR DAUGHTER.

TAMMY CRAWFORD: THANK YOU SO MUCH.

TED SIMONS: THANK YOU FOR JOINING US.

TAMMY CRAWFORD: THANK YOU FOR HAVING ME, THANK YOU.

Tammy Crawford: Executive director of Focus on Lyme

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