Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at firstname.lastname@example.org.
How were you finally diagnosed with Lyme disease?
People ask me this question all the time, especially when their own lab work comes back negative or equivocal, but they have symptoms of Lyme disease or remember a tick bite. Here’s an important fact that not everyone—including some doctors—knows: per the CDC, Lyme disease is a clinical diagnosis. That means that it is up to your doctor to determine, based on your symptoms and on factors such as whether you had a tick bite or whether you spent time in an area where Lyme is common, whether you have Lyme disease or not. That clinical diagnosis can be supported by lab tests, but tests alone cannot definitively say whether you do or don’t have Lyme disease.
That last part bears repeating: tests alone cannot definitively say whether you do or don’t have Lyme disease. This is because Lyme tests only look for antibodies against the bacteria that causes Lyme disease, not for the bacteria itself. Testing for Lyme disease is faulty for a number of reasons, including the fact that standard CDC tests only looks for a very narrow set of bands of antibodies—so narrow, in fact, that those tests were not actually designed for diagnostic purposes, even though they are used as such. You can use other labs that look for a wider range of bands (for more information, see GLA’s Lyme Disease Testing page), which can give your doctor a better read than standard tests. At the end of the day, though, the diagnosis is still up to your doctor.
I was clinically diagnosed by a Lyme Literate Medical Doctor (LLMD), and I was lucky enough to also have a CDC-positive lab test. I also tested positive for the co-infections babesiosis and ehrlichiosis, and my doctor suspects that I also had Bartonella. If you had a standard Lyme test come back negative but have reason to believe you do in fact have Lyme disease, see a LLMD. They will make a clinical assessment, likely do the more specialized tests, and probably do tests of certain biomarkers that may help them figure out if you have Lyme disease.
Can tests show that your Lyme disease is gone or in remission?
Unfortunately, no. If you’ve had Lyme disease, your long-term antibodies (IgG) will likely continue to show up whether your infection is active or not. Antibodies of acute Lyme infection (IgM) could mean your old infection is still active, or they could mean you have a new infection. As a result, most doctors do not use tests to determine whether your Lyme infection is cleared or dormant; they go by clinical symptoms. Other biomarker tests, like inflammatory markers and immune markers, can help them determine how active your infection is, but currently there is no direct test to determine where your Lyme infection stands.
Is it important to get other blood work done while you’re being treated for tick-borne illness?
Absolutely. Even though tests can’t reliably tell you whether you have Lyme disease or how active the infection is, it’s really important that your doctor does regular blood work ups to determine how your tick-borne infections, and your treatment for them, are impacting your body. You may get depleted of certain nutrients, your inflammatory markers could be high, or you might show anemia. I get a complete blood count (CBC) and comprehensive metabolic panel (CMP) every two months; when I was acutely ill and on intravenous antibiotics, I had my blood drawn every week. My doctor also does specific tests for markers that have been off for me in the past (for example, my ferritin levels were recently low, so I needed to take an iron supplement for a little while).
It’s also important to check for other health issues that may be going on in addition to tick-borne illness. When we’re in the midst of battle with these illnesses, it can be easy to forget the bigger picture, but you need to keep up with other regular health exams, too. A few years ago, I had a mammogram that showed a lump that required surgery. Thankfully, everything was benign, but if I’d skipped the mammogram to focus only on tick-borne illness, I might not have caught the lump in time. Make sure to keep up not just with regular blood work but also with annual health appointments, like the eye doctor and the dentist, as well.
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
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, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.