How to get answers: Diagnosis 101
Blog by Hayley Scarano
From every interview I’ve conducted and Lyme & tick-borne disease (Lyme+) patient I’ve spoken with, one thing is abundantly clear – Lyme+ is incredibly difficult to diagnose. Tests are not widely administered, particularly in parts of the world that aren’t historically considered hot spots. Anecdotally, we’ve heard that a lot of doctors said “Lyme+ isn’t a problem here” when patients have had relevant symptoms, or even tick bites, or even explicitly asked for the test and been denied. Even when administered, said tests are only 35% accurate. To put it plainly, current methods used to detect Lyme+ aren’t good enough. We hope to help educate the public on how to identify symptoms, when and how to get tested, and how to advocate for yourself or your loved one when healthcare systems fall short. Disclaimer: We are not medical professionals – this is not medical advice, but a collection of resources.
Recognizing the signs & symptoms
Rashes: An identifying symptom of early Lyme+ is a rash, often red and shaped like a bullseye. It can often be a more standard rash, presenting as a pink or red area around the bite.
Flu-like symptoms: Often called “summertime flu”, with fatigue, fever, headache, & body aches.
“The Great Imitator”: Lyme is often referred to by this name because it produces a wide range of symptoms, mimicking rheumatological and neurological conditions like Fibromyalgia, MS, rheumatoid arthritis, and lupus. These symptoms, like fatigue, joint pain, brain fog, numbness, and or mood, mental, and sleep disorders, often present after an infection has gone untreated.
What to discuss with your doctor
Potential risks: Where you live, recent activities, and where you’ve traveled. Less than 30% of US patients with Lyme disease recall a tick bite, so understanding your risks are imperative.
Symptoms: Any changes in your health, even if they’re as mild as allergies or the common cold.
Your health profile: Any pre-existing conditions, allergies, medication intolerances, etc.
Antibiotics: Ask your doctor about preventative antibiotics, even if your case is unconfirmed.
Tick testing: If you have the tick you were bitten by, discuss testing it for pathogens.
Co-infections: Not all tick-borne diseases are bacterial; one of the biggest problems is Babesia. Like Borrelia & Bartonella, Babesia is a parasite, but it is a protozoan (like Malaria). These different co-infections may not only present different symptoms, but also require different forms of testing.
Two-tier testing
ELISA: The Enzyme-linked immunosorbent assay is the first step in indirect diagnostics, testing for antibodies.
Western blot: If antibodies are present in the ELISA, the western blot is a follow-up test to confirm that these antibodies are present.
Flaws: It can take 2-8 weeks after infection for antibodies to show. Once positive, antibodies may persist for months or even years, so it’s possible for a test to catch antibodies from a cured infection. Lastly, the tests are unable to detect some Borrelia species that lead to Lyme or other tick-borne co-infections. Due to these limitations, the two-tier tests miss ~60% of acute cases.
Other testing
Lyme ImmunoBlots Test: The IgM and IgG ImmunoBlot (IB) are typically used when the ELISA and western blot are inconclusive. They test for antibodies in a patient’s plasma or serum, and are generally more sensitive and precise than the two-tiered system.
PCR: Polymerase chain reaction tests are considered “direct testing” because they test for the presence of bacteria, not just the body’s reaction to it. PCR tests are highly accurate when Lyme bacteria are detected, but often Lyme bacteria in a patient’s body are scarce and thus the test does not detect them, presenting a false negative.
Antigen detection tests: Also considered a direct test, these tests look for a unique Lyme protein in a patient’s blood, urine, or joint fluid. Antigen tests often come back positive when a patient’s indirect test came back negative.
Culture: Considered the “gold standard” for identifying bacteria, the lab takes a sample of blood or urine and attempts to grow Lyme spirochetes in a special medium.
Options: IgeneX, and Quest have FDA-approved tests, well-respected in Lyme-literate medicine. However, Quest can not test for many co-infections. Galaxy Labs is another option, classified as laboratory-developed tests and offered as a clinical testing service.
What you can do
Identify & test your tick. If bitten, identify your tick and maybe get it tested for diseases to get ahead of potential symptoms. This site can help you identify your tick and associated risks. Info on testing your tick here.
CLIA-certified labs meet strict federal quality standards and test for some antibodies that the CDC excludes from its testing. Ensure you are testing through a CLIA-certified lab, particularly one that specializes in tick-borne illnesses. Find a lab here.
Advocate for yourself and your loved ones. Inaccurate, incomprehensive tests, coupled with unawareness in Western medicine, makes Lyme+ incredibly hard to diagnose accurately. An undiagnosed Lyme infection can lead to chronic Lyme, while an infection caught early can save your life. Trust your symptoms, seek Lyme-literate doctors if you think you may be positive, and speak up when you know something is wrong. If a doctor denies you a test, seek further care on LymeDisease.org or International Lyme & Associated Diseases Society.
Know the symptoms and understand your risk. Lyme symptoms are easy to miss, particularly if you don’t know you’ve been bitten. Understand the risks and study this symptom checklist.
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