by Dr. Bill Rawls
Discover why Lyme disease tests often deliver false negatives, plus learn the best time to get tested and when to trust your symptoms over test results.
Question: Why is it so hard to diagnose Lyme disease?
Why is it so hard to diagnose Lyme disease? That’s a common question that comes up, and it really depends on when you test for it. The testing is designed to test for acute Lyme disease.
When you get bitten by a tick and the microbes enter your bloodstream, they are very rapidly, as fast as they can, moving from the tick bite through your bloodstream to disseminate out into your tissues. Fairly quickly, they invade white blood cells, which helps them to be dispersed throughout the body. They’re clearing the bloodstream.
Borrelia is not a new microbe to humans. Humans have been being infected by this microbe for thousands, even millions, of years. It’s a very ancient microbe, so the immune system knows it.
That’s why people don’t really get acutely ill when they first get infected. As soon as the borrelia microbe enters the body, it has a little bit of time that the tick gives it. The tick saliva depresses the immune system so the microbes can get a headstart, but they’re running. The immune system is hot on their tail and trying to get rid of them. They’re really good at persisting, and the way they do that is to bury deep in tissues.
You’ve got a window of opportunity, when these microbes are moving through the bloodstream and when the immune system is reacting maximally, that you can actually find these things. That’s when the diagnosis is most accurate, and that’s what the tests are designed for, is during that acute phase of weeks to months.
The thing is, most people don’t get that symptomatic from an acute tick bite, unless the other microbes besides borrelia are in the mix, which often occurs. But many people don’t get sick. They don’t get sick until later, when their immune system has been disrupted and they end up with what we define as chronic Lyme disease.
Once you’re in the state of this thing called chronic Lyme disease, and the microbes are buried deeply in your tissues, the immune reaction is then attenuated. It’s not as strong, so the testing isn’t as accurate. When we look at testing, how do you define that a test is good? Well, you take that test and you take a group of people that you know have the microbe in their systems. You are aware from culture testing that 100% of those people are infected with the microbe, and you see how well your test stands up to that control population.
If it says it’s 95% — good. In that known population that are acutely ill, your test is good enough to pick up 95% of those people that are 100% infected. You take that out to a chronic-illness population and you’re just not going to see the same results.
Beyond that, there are many, many species of borrelia, and the testing may test for the current ones that we know about in that region, but what we’re finding with people moving around the world is that many of these species are now becoming disseminated more widely and there are probably borrelia species that we don’t know about. In addition, there are all of the co-infections.
Mycoplasma, borrelia, bartonella, and all of these other microbes can cause very similar symptoms. You could actually have other microbes besides borrelia, the one that classically defines Lyme disease, and still have all the symptoms without having a positive test for Lyme disease.
When you go about the testing, always take it with a grain of salt. If you have all the symptoms of Lyme disease, a possible history of tick bite, but a negative test, I can tell you you’re carrying tick-borne microbes. You’ve got microbes in your system.