Preparing for your first visit with a Lyme Literate Medical Doctor? Should you rest or get out each day when you have Lyme disease? All this and more in Jennifer Crystal's latest edition of "Dear Lyme Warrior... Help!"
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.
QUESTION: How should I prepare for my first visit with a Lyme Literate Medical Doctor?
A Lyme Literate Medical Doctor (LLMD) is a practitioner who is well-versed in the diagnosis and treatment of tick-borne illness. If you’re going to see one, you’ve likely been dealing with symptoms of possible tick-borne illness for a long time. If that’s the case, you probably have quite a story to share, so it might feel overwhelming to think about getting all the important details out in the span of one appointment.
Before your visit, I recommend writing out your illness narrative for yourself. When did your symptoms start? How long have you been unwell? What diagnoses or treatments have you been given thus far, and what brings you to today’s appointment? Once you have your story down on paper, go through and highlight the most salient information, condensing your story into one page. You might consider drawing a bulleted timeline. Also list your risk factors for tick-borne illness—whether you had a known or suspected tick bite, and whether you live in or traveled to areas where ticks live—as well as your symptoms, your previous medical history, and your current medications. You can bring this one-page synopsis to the appointment and have the LLMD read it to help guide your conversation.
In addition to this information, bring any relevant lab work. I also recommend writing out a list of questions you’d like to ask the doctor. Bring a notepad with you to write down what the doctor says—or better yet, bring someone you trust, so they can take notes and later help you digest the information presented to you.
To find a Lyme Literate Medical Doctor in your area, visit https://www.globallymealliance.org/lymedoc.
QUESTION: When you have Lyme disease, is it important to get out each day, or is it best to stay home and rest?
The person who can best answer this question is you. Lyme patients tend to hear so much advice (often unsolicited) from the people around them, telling them what they “should” do to get better. “You should get outside.” “You should exercise.” “You should try this supplement.” I’m always wary of statements that involve “should” unless they’re coming directly from my doctor, and even then, often it’s a determination we come to together based on my symptoms and needs. You know your body best. If you feel up to getting outside, that is great. But if you’re feeling desperately in need of rest, then listen to what your body is asking for.
To quiet the voices of “should,” think instead of what you can do. Are you feeling like you should get outside because someone else said so, or are you feeling capable of going out? The answers are often not the same. (For more on this distinction, see my blog post “Can’t Versus Shouldn’t”.)
That all said, being sick can be isolating and depressing. Socializing and making attempts to interact with the healthy world can lift your spirits. What are some ways you can do this that feel possible with your current symptoms? For example, if you don’t feel capable of attending a party, could a couple guests stop by and visit with you for twenty minutes beforehand? If you don’t feel capable of a walk around the block, would it be possible to sit in a chaise lounge on a patio, just to get some sun? There are often workarounds that can allow you to get out without pushing yourself beyond your limits.
QUESTION: Were you tested again for Lyme when your infection relapsed?
One of the many problems with current Lyme disease testing is that it cannot distinguish an old infection from a new one. Lyme tests only look for antibodies against the Lyme bacteria, not for the bacteria itself, and those antibodies will stay in your system—and likely continue to show up on a test—whether you have an active infection or not. Therefore, it isn’t helpful to do another test when symptoms of this relapsing illness come back.
Lyme disease is a clinical diagnosis that can be corroborated by blood tests, but those tests alone cannot determine if someone does or does not have Lyme. Whether you have a new or a recurring infection, that diagnosis should be made by your physician. They can do other tests that can help with their assessment, such as brain imaging, or tests for certain inflammatory or immune markers. My own relapse was diagnosed based on my symptoms, my external stress factors, a brain scan, and blood work for several different biomarkers. Similarly, my remission has been declared by my physician based on changes in biomarkers and, most importantly, my own report of symptom load.
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