Get answers to your pressing Lyme disease questions, including diagnosis, testing, treatment, and persistent symptoms, from Lyme warrior Jennifer Crystal.
Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.
I tested positive for Lyme disease and was diagnosed and treated. I now test negative but still have symptoms. Could it still be Lyme?
Yes. Blood tests alone cannot determine if a person does or does not have Lyme disease. They also cannot determine if someone’s Lyme infection has been cleared, nor they can determine if you have a new or an old infection if you do test positive. This is because tests only look for antibodies against the Lyme disease bacteria, Borrelia burgdorferi, not for the bacteria itself. A person needs to have enough antibodies in their system to show up on a test. When you’re initially infected, you won’t have time to build those antibodies, so you’ll likely test negative even when you’re acutely sick. Some people never build enough antibodies to show on a test. And some people’s antibodies, like perhaps your own, fluctuate, sometimes showing enough for a positive test and sometimes not.
It also depends what type of test is run and how it is evaluated. A first-tier ELISA test may not show reactivity to Borrelia burgdorferi, but a second-tier Western Blot test might; unfortunately, many doctors never run the second test if the first is negative. The CDC requires a certain number of “bands” to be reactive on a Western blot test in order for it to be considered positive. But even if you have less than the required number of positive bands, you do still have antibodies for Lyme disease. You might ask your doctor which test was run and, if it was a Western blot, how many “bands” were positive. (To learn more, see Lyme Disease Testing.)
More importantly, though, you and your doctor should be focusing on your clinical symptoms, which is the basis on which Lyme disease is diagnosed and treated. If symptoms persist, particularly if they’re the same symptoms you’ve had all along with Lyme, you probably still need more treatment. It’s also possible that your immune system has become dysregulated, or that you’re experiencing ongoing inflammation; there are multiple possible causes of persistent symptoms of Lyme disease.
My recommendation is to a see a Lyme Literate Medical Doctor (LLMD) who can clinically evaluate whether you are still battling Lyme disease and/or whether a co-infection might be complicating your recovery.
Can being on certain medications affect Lyme disease blood tests?
So many factors can affect Lyme disease blood tests, most notably your own immune system and how it reacts to Lyme disease (i.e., whether it builds enough antibodies against the Lyme disease bacteria to show up on a Lyme test at a given moment). And lots of factors can affect your own immune system, from what else it’s battling to outside stressors, as well as supplements or medications that could enhance or suppress your immune system. Talk to your doctor about whether your specific medications affect your immune system. More importantly, though, make sure your doctor is not relying solely on blood tests to determine if you do or do not have Lyme disease (see previous question).
Can I get Lyme disease while I’m on treatment for it?
If you’re being treated for active Lyme disease, it’s unlikely that you’ll be re-infected. If your Lyme is in a dormant stage and you’re on a maintenance mode of medication rather than a treatment dose, I’d suspect the risk would be higher, though this is something to ask your LLMD. I personally am on a maintenance dose of antibiotics, not the first line treatment for acute Lyme disease, so when I have found a possible tick bite, my doctor has put me on a course of doxycycline on top of my other antibiotic, just to be safe.
My biggest concern is that I could get infected with another tick-borne illness. Unless you’ve won the lottery of every single tick-borne illness, another bite could leave you vulnerable to a co-infection that you don’t yet have. Some, like babesiosis, require different treatment than Lyme disease. Babesiosis and other tick-borne illnesses like Powassan virus can be quite serious. This is why it’s important to remain Tick AWARE and take prevention measures even if you are already being treated for Lyme disease.
Jennifer Crystal
Writer
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, was published by Legacy Book Press in 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.
