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.
Do you know of a good live blood analysis or test for Lyme disease?
No. The only way to test directly for Lyme disease in humans is through synovial fluid in the joints or cerebrospinal fluid via a spinal tap. These tests are invasive and expensive, and therefore rarely used. All other FDA-approved Lyme disease tests are indirect blood tests that look for antibodies against the Lyme disease bacteria, Borrelia burgdorferi, not for the bacteria itself. There are people out there who may claim they have a “fool-proof” direct Lyme test—likely an expensive one—but any such test is not FDA-approved, and you should not waste your money on it.
Lyme disease is a clinical diagnosis that should be made by a Lyme Literate Medical Doctor (LLMD) based on symptoms and risk factors. Blood tests can corroborate a clinical suspicion of Lyme, but because the tests are so faulty, they should not be used solely to determine if a person does or not does have Lyme disease. For more on Lyme disease testing, see “Lyme Disease Diagnosis: Key Steps in Diagnosing Lyme Disease”.
Will I continue to have Lyme disease symptoms, or do people eventually recover? It feels like I get sick often and my immunity is low.
Lyme disease is a multisystem bacterial infection that can do significant damage to the body and nervous system. That said, the answer to this question depends largely on how quickly and effectively a patient is diagnosed and treated. If you find a tick bite or see an Erythema Migrans (EM) rash and are treated immediately with a full course of antibiotics, the Lyme infection can be cleared. However, 10-20% of people who are treated for acute Lyme disease still go on to experience persistent symptoms.
If Lyme disease is not diagnosed immediately, it can spread to areas of the body such as the joints and heart and even cross the blood-brain barrier into the central nervous system. In these later stages of Lyme disease, the bacteria are much harder to kill off, and some people remain ill. Each person’s response to Lyme disease and its treatment are different, and can be affected by their own immune system, other tick-borne diseases (some of which require different treatment), and co-morbidities.
It took me eight years to get accurately diagnosed, and several years of treatment (including one complete relapse) to work my way into remission from Lyme disease, babesiosis, ehrlichiosis, and chronic active Epstein-Barr virus. I have been in remission now for over a decade. Lyme and some of my co-infections and co-morbidities are relapsing illnesses, so I have experienced small flares throughout the years, but those flares have become fewer and farther between.
Like you, I am more susceptible to other illnesses, and they affect me more than they do the average person because tick-borne illness has compromised my immune system. What you’re experiencing is normal—many patients suffer from weakened immune systems, altered neural pathways, or chronic inflammation following acute tick-borne illness—but the good news is things can get better. Some people do fully recover, and others like me live well in the context of chronic illness. A good Lyme Literate Medical Doctor (LLMD) can help you determine which treatments, supplements, and lifestyle changes can help you live your best life with Lyme.
To learn more about how I’m doing now and what’s worked well (and not so well) in my recovery, see “Status Check: Lyme Warrior Jennifer Crystal Reflects on Where She is Now”. Don’t give up hope!
I’ve read your book and would love to talk to you about it. How can I do that?
Thank you for reading One Tick Stopped the Clock! The best part about having my memoir out in the world is getting to connect with fellow patients who feel represented in my story. I am doing in-person and remote author talks and book signings. Some talks focus on tick-borne illness awareness, some focus on living well with chronic illness, and some focus on the healing power of writing. You can check out upcoming events on my website. Please contact me if you’d like to schedule an event in your area, or if you’d like to do a remote author visit with your Lyme support group!
If you haven’t yet read One Tick Stopped the Clock and would like to, it’s available here. Ten percent of book proceeds go to Global Lyme Alliance.
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