As the tick population continues to explode in the Northeast, the number of cases of Lyme disease continues to grow. It’s a big issue in New Hampshire as we have thousands of cases of Lyme each year, but experts say the number is actually much higher than what is ever reported. There are also many other tick-borne diseases that are being misdiagnosed and treated incorrectly.
Related: Things You Should Know About Ticks
Right in the middle of this quagmire are the diagnostic tests being used to screen for Lyme.
Beth Daley is a reporter for the New England Center for Investigative Reporting and joins me to talk about her report looking into the business behind these tests, and the confusion around them.
In her article, she writes "An exemption in federal regulations allows many labs to offer Lyme tests without proof that they accurately identify the disease, leaving anxious patients and their doctors to decide which tests to believe."
Can you give us an explanation of why there is so much controversy surrounding Lyme disease and the diagnosis?
There is a big controversy with Lyme disease over the diagnosis, the treatment and how long this illness can last. The tests fit very neatly into this controversy. Many people who are very sick feel they have a chronic form of Lyme disease and may need months, or even years, of antibiotics to get better.
But the mainstream medical establishment does not believe in this definition of Lyme. They believe, for the most part, that you get better when you take antibiotics for a month or two. However, once people get a negative test result from the mainstream medical community and they’re still sick, they remember their tick bite and go elsewhere for a diagnosis. Often times they end up with a doctor who uses one of these controversial tests.
Is there a big financial incentive for companies to offer this testing?
There is, though it’s not like they’re all bad tests. The problem is that the way the system works right now, there is an FDA approved test, but it’s far from perfect. It doesn’t detect the disease for many people in the early stages of the illness, though it does capture people very well after the disease has progressed for a few weeks.
But we know their limitations and scientists have vetted the test over and over again in peer-reviewed literature. A lot of these private companies and labs have developed tests that are proprietary and they have not published the peer-reviewed, accepted scientific method. That’s how science works. The end result is that some patients and doctors just have to trust the labs word that their tests are good.
Explain the conflict of interest that your story details.
It’s unfortunate that some of these Lyme testing companies have testimonials from doctors that say “We really love this test.” One doctor that I talked to, a professor at NYU, said that he trusted a test in Philadelphia. What he did not tell me, or any other member of the media, is that he’s a paid consultant to the lab. I only know this because I got records from the state of New York. The state acts as a gatekeeper to these tests to protect New York residents.
Most states let any diagnostic test in, but New York looks to make sure the tests do what they say they do. In the last decade they have rejected seven labs from offering Lyme tests in New York.
Is the big fear that people will take these tests, get a positive result and start treatment when it’s not really necessary?
Exactly. A couple things can happen. For one, you may have something completely different from Lyme. You may have another tick born disease, there are four of five that a deer tick can carry, and Lyme treatment is not what you need.
The other option is that you may have something completely different and being treated with months or years of antibiotics will not actually help you. It may, in fact, hurt you. A long use of antibiotics hurts both society and the patient. It does a number on your body and also builds up the bug’s immunity.
However, there is a twist in this. I know a lot of patients that are really sick and take antibiotics and they feel better. So what’s going on? The answer to this is that no one really knows. They may have another bacterial illness that the antibiotics cure, or maybe the antibiotics which can be anti-inflammatory, are helping them feel better. It gets pretty confusing pretty quickly.
Is there more research being done to find better testing methods that can identify Lyme earlier?
Yes. There is a lot of research and effort being put in to find different methodologies to test Lyme bacteria. The issue is that these efforts have yet to hit prime time because they haven’t been written about or reproduced in peer-reviewed journals.
This puts patients in a really tough position because they are being told by the medical establishment that they don’t have Lyme, but no one knows what they have. Many of these people are then told to see a psychiatrist because they’re depressed or anxious. Some seek a second opinion from a doctor who says they have Lyme but cannot back it up with any science. You can see how easy it is to be diagnosed with Lyme disease.
Patients are so desperate for an answer about what ails them that they accept Lyme disease and request treatment. One thing I did find talking to doctors that recommend these tests is that they tend to not ask questions. In the end, that benefits no one.