Lyme disease expert Jennifer Crystal answers questions on tick transmission, Lyme rash, and getting proper medical care, offering essential advice for managing Lyme disease effectively.
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.
How long does a tick need to be on me to transmit disease?
This depends on several factors, including which disease we’re talking about. Transmission times for different tick-borne diseases vary. Powassan virus can be transmitted in as little as 15 minutes. The CDC says that a black-legged tick generally needs to be attached for 24-48 hours to transmit pathogens, but there are documented cases of Lyme disease bacteria, borrelia Burgdorferi, transmitted in less than 24 hours.
The tricky thing is, it’s hard to know exactly how long a tick has been attached, because you’re unlikely to see the moment it bites you (tick bites don’t hurt). The longer it’s potentially been on, and the more engorged (full of blood) it is, the more likely it’s had time to transmit pathogens, so it’s always better to err on the side of safety. If you discover a tick bite, call your healthcare provider right away and see if it makes sense for you to be evaluated and treated. I personally would much rather take prophylactic treatment than wait and see if I develop symptoms, which can give illnesses time to spread and make them much more difficult to treat. In other words, I’d rather do one course of antibiotics now rather than end up having to take months of antibiotics—that may or may not work—down the line.
I have chronic Lyme and sometimes still develop Erythema Migrans rashes. Does that mean I’ve been reinfected?
Probably not, unless your Lyme was fully treated (which it sounds like it wasn’t) and you got a new tick bite. The Erythema Migrans (EM) rash of Lyme disease can appear at different points during illness. Some people notice a rash right away, but those with later stage disease sometimes notice multiple EM rashes weeks, months, or even years after the initial tick bite. I had an early EM rash (though I didn’t know that’s what it was) when I was first bitten by a tick. Two years later, I had bullseye rashes on either elbow. It was those rashes that finally got me to see a Lyme Literate Medical Doctor (LLMD) and get accurately diagnosed. Remember, too, that Lyme is an inflammatory disease, so it can cause inflammatory reactions like hives.
How can I get doctors to listen to me so I can actually get help?
When you’ve gone from doctor to doctor, it can be exasperating and exhausting to continually repeat your story—especially if practitioners don’t seem to be listening, or if they interrupt you or invalidate what you’re saying. Patients who have experienced dismissal or gaslighting develop legitimate medical trauma, making it more difficult for them to open up to a new practitioner for fear of the same response. Here are some suggestions that have helped me along the way:
- Bring a friend or relative with you to take notes and to help you articulate your thoughts or ask questions. Having an ally in the room can help you feel confident to share your story. Having them take notes helps you remember everything the doctor says.
- Write out your medical history to either give to the practitioner at the beginning of the appointment or share with them in advance. Include diagnoses, current medications, and recent lab work. The Lyme Wellness Initiative at Harvard Health Publishing offers a downloadable template to fill out before an appointment.
- Write up a brief (one page maximum) summary of what your current symptoms are and what your concerns are. Include any questions you have. Give this to the practitioner at the beginning of the appointment or send it in advance.
- At the start of the appointment, briefly share what hasn’t worked for you in past appointments, and let the practitioner know that you’re hoping to collaborate to make decisions for your health.
- Remember that a new practitioner is not the same as an old one. Be open and give the new person a chance, rather than coming in defensive.
If covered by insurance, most doctors only have about 15 minutes for appointments, so taking these steps beforehand can help make best use of that time.
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