Lyme Disease Diagnosis Dilemma

An investigation finds many Lyme disease tests are ineffective.
7:46 | 06/23/14

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Transcript for Lyme Disease Diagnosis Dilemma
Yes it's easy to get outdoors in new England and unfortunately that also means it's -- Lyme Disease season. A recent federal study found there are roughly 3.4 million -- lyme tests conducted in the US each year. But how accurate are they. Our partners -- new England center for investigative reporting found some labs may be incorrectly diagnosing patients with unproven tests. WJ aviation news reporter repression noise has the story. On a beautiful fall day in 2010 Brandi dean -- watching her husband plays soccer on a field near some woods. That's when she thinks she was bitten by a -- I got really sick I am had severe panic attacks and swollen -- -- muscle spasms. Dizziness I was losing my hearing. Dean thought she might have lines and her doctors gave her one of the federally recommended tests for the disease. I had three positive. -- attacks and several doctors -- totally disregarded my positive tests. That's because doctors consider their federally recommended line tests -- reliable. Since dean didn't have the telltale sign of -- a rash that looks like a -- she was told she probably didn't have the disease. It was -- I just felt ignored completely ignored by the medical community. Dean ultimately found a doctor willing to treat her for -- Other patients with uncertain test results aren't so lucky leaving them frustrated and miserable. I understand why people would who may have gone to their primary care physician been tested by the traditional methods were negative. Are desperate to try to be diagnosed. Andrew underdog speaks from experience. The Harvard pathology professor was diagnosed with Lyme Disease in 2012 using one of the federally recommended tests. In my case it was easy because that I was that was -- it has such a positive test result that wasn't ever an issue. I probably would have sought an additional test for Lyme Disease have a thought that's what I -- Some frustrated patients seek out doctors willing T used test. That having gone through a full federal review those -- validated tests can be even less reliable than the recommended tests. Many of these because they have not been invalidated properly. -- either misdiagnosed. Someone is having disease that they don't. Or alternatively not diagnose somebody who in fact it has an infection. Certain labs sell -- -- tests without federal review because of a loophole created in the 1970s. And they're making money on and they don't really want to go through expense. Going through a true validation. New York is the only state that reviews diagnostic tests to make sure they work. And officials there have blocked seven US -- from selling line test in the last decade. They include one companies cited for quote unquote -- standard scientific practices and another owned by a man convicted in a medical research fraud case. Both legs tell any CIA are they stand by their tests. But underdog says doctors who use -- validated tests are in danger of -- diagnosing their patients. And it's hard I think for any professional to say listen I don't know. What's causing your symptoms but. Being treated for Lyme Disease may be harmful Brandi dean is finishing the antibiotic treatment that alleviated her symptoms. And she now runs a support group remind patients. I don't think any of us have any confidence and that tests that are available to us now. Which is very -- because I think once you are able to diagnosing illness. -- -- -- you can help treat these people who are very -- Until then dean says there will be more stories like curse. Repression knowing WGBH. News. I'm joined now by the -- reporter on this story of Beth -- started this investigation a year ago thanks for joining us -- -- -- got curious occasion had. A family situation what happened there I did in my husband's first cousins life. With who were very close to. Got sick in 2010 and over the course several months in over a year she candidly -- with chronic Lyme Disease. She unfortunately -- her own life and 2012. And the question that it is -- -- very sad tragic cases can imagine but. -- noise is question issue really have -- -- herself would question it sometimes because the testing some test said she did not. But most attests -- she did say she did test at one point positive for. She did but it was by using a test says it was not treasury recommended OK so if saudis doctors are saying that he's. Federally regulated tests are unreliable. Why are they recommended. Defender recommended tests are not perfect no test is perfect Joyce can have -- innocent people who have disease and until the they have these you don't have the disease. But the limitations are known so this could essentially. Recommended -- pit bull we'll say look we know what we're not good at really diagnosing patients early on with the disease if you'd just get to tick bite. And yet your body's building -- antibodies it which is what they test for. To lyme bacteria reading this that you -- get Lyme Disease but that the accuracy that tested -- greatly over. A short period of time so by the time several weeks passes it's gonna -- catch you if you have Lyme Disease. And fortunately I'm validated test never have gone -- that's an independent scientific review being vetted by the scientific community so it's basically people for the public good doctors have to trust celebs were. -- the test is correct why is -- such hot potato we couldn't even get a single doctor we tried 102030 people to come on donated talked about this. Why is it because I mean. Is in this whole gray area where doctors are skeptical about Lyme Disease period. He had no it's it's really interesting it is when I first set I was -- -- -- to Lyme Disease I was actually at. And -- funeral and the other hundreds of people there. And it it -- clear to me how controversial it is and I -- delved into and out of -- part of the Boston Globe looking at Lyme Disease. And it is so controversial. I mean doctors actually have traveled -- some kind I it's actually Tampa. -- and it's because of this it's because many many people are sick knowing denies that they're very very sick they don't know what they have because ticks are becoming such a big problem. -- -- -- -- -- -- -- -- No bigger than appeared at the end of a sentence so we could -- -- you never know it. Then they say I'm sick of this infants are very -- and they they go to the doctor. The doctor says you know we'll test you with these federally recommended tests that not perfect but the best we have. They get a negative result they say will have the doctor says I don't know but he actually kind of depressed and anxious -- who is it when -- really sick. When he does he's psychiatrist one this year it's an and people feel and I talked literally. Scores of them -- -- -- alienated by that response it's not like let's try to. Find out what's wrong with you doctor says I don't know it's cheaply do half of and the patients get very upset they feel isolated they then go looking elsewhere for an answer who -- -- right. And -- -- parliament local world that exists today. Filled us with a group of doctors who call -- -- lyme literate doctors who are willing to listen to patients really try to understand them. Problem is not all of them agree and some of -- -- tests that are not validated. So it's it's sort of murky world -- not a yes or no answer. With them. It is very confusing all right let's hope nobody gets at this summer. Hit Thailand and their pets to and that -- -- -- able to be able to treat you more easily get -- there's a vaccine there but -- best don't think so much for coming thanks --

This transcript has been automatically generated and may not be 100% accurate.

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