What To Do If You Think You’ve Been Exposed To Lyme Disease

If you find a tick attached to your skin and you suspect it’s been there for a while, what do you do?

With all the headlines about Lyme disease, it’s natural to immediately wonder if you’ve been exposed to the Lyme bacteria. But even if you have, doctors say you can probably fend off the illness if you act quickly.

As part of WBUR’s week-long series, All Things Considered host Sacha Pfeiffer spoke with Dr. Jonathan Edlow, an emergency physician at Beth Israel Deaconess Medical Center, about treatment for possible exposure to Lyme.

Sacha Pfeiffer: We know from having chatted with you to prepare for this interview that you say that some people tend to, in your words, “freak out” when they have a tick on their skin, and you say that you actually see a lot of those people in the emergency room for this. How alarmed should people be or not be when they spot a tick on their skin?

Dr. Jonathan Edlow: Well, it’s certainly something that one needs to take some action, the first action being to remove the tick. This is sort of a perfect time to prevent a disease when you catch it at the stage of a tick bite because the disease hasn’t really established itself yet. Certainly if the tick is still crawling around on your skin it’s definitely zero risk to you. If the tick has bitten you, it’s doing that to get a blood meal so it can go to the next stage of its existence. And essentially a tick goes from flat like a sesame seed to something spherical like a raisin. As it engorges with blood, it literally changes its shape.

And is there some midpoint where a tick might not be totally engorged but may still have transmitted enough bacteria to infect you?

There is, and you can look up pictures. One web site is emedicine.com, which has some good close-up photographs of partially engorged ticks. But the bottom line is that if you’re not sure, it’s worth speaking to your doctor.

So if there’s a concern that a patient may have been exposed to Lyme disease, but it’s too early for that patient to have symptoms, what is the treatment?

The treatment for a tick bite — assuming that the tick has been on you for at least 24 hours [but] it hasn’t been on you for more than 72 hours, and it’s a deer tick — would be 200 milligrams of Doxycycline for an older child or an adult. Treatment at that stage is really to prevent Lyme disease.

But if a person is showing Lyme symptoms, such as a rash or a fever and muscle aches, is that patient beyond the window of time in which a small dose of antibiotics can possibly help?

That’s correct. The 200-milligram dose of Doxycycline is to prevent Lyme disease. What you’re describing — having symptoms of a rash or a fever — that’s established Lyme disease and requires a longer course of antibiotics.

What about the message that the medical community has been sending for years — that overuse of antibiotics can contribute to the problem of antibiotic-resistant bacteria? Could we be contributing to that problem by having people take small doses of antibiotics as soon as they think they’ve been bitten?

I think taking a 200-milligram dose of Doxycycline one time is very unlikely to contribute to all of the badness that we are creating on our planet based on resistance patterns of antibiotics. To the extent that we’re preventing a disease that we would then be treating for 10 days or two weeks or three weeks of antibiotics, we’re eliminating the need for a longer course of antibiotics.

Another thing to consider in all this is that Lyme disease tests can’t provide a positive or negative result right away, and they’re also not considered highly reliable. Would you tell us about some of those testing limitations?

Blood testing for Lyme disease is a lousy test early on. What people need to realize is that Lyme disease testing is not a test to see if the Lyme disease bacteria is present or absent. Lyme disease testing is testing for antibodies, and it takes time for those antibodies to develop. Even at the stage of early Lyme disease — when, let’s say you have the bull’s-eye rash, which is not always a bull’s-eye, I should point out, but let’s say you have a fever and chills, or you have a rash or headache — even at that stage, if you were bitten three weeks ago, your blood test may be negative. And, in fact, 50 percent of patients with early Lyme disease will be negative by their blood test. In fact, when you have the rash it’s like a diagnostic gift. If you’ve got the rash and you can see the rash, I jump for joy because I can make a specific diagnosis with confidence and I don’t need blood tests or X-rays or consultants or scans or anything.

Once you have been positively diagnosed with Lyme disease, you still take antibiotics as a treatment, but sometimes I hear people taking it for 10 days, sometimes three weeks. How are doctors deciding how long to leave that person on antibiotics?

The guidelines, first of all, go anywhere from 10 days to 21 days. I think that part of it is how the doctors read the literature and how anxious a patient is. My bias is to treat for three weeks. There have been studies in the last six, seven, eight years that suggest that a shorter course — i.e. 10 days — is adequate.

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  • Steph

    Omg, this is the worst advice ever. Basically everything that this doctor says, do the opposite. Only speak to an LLMD, they actually know what they’re doing.

  • Richard

    The single dose of Doxy for a tick bite was proposed by Dr. Gary Wormser, head of the IDSA’s Lyme committee. I have not been able to find a single study or justification for this so called preventative treatment for a partially engorged tick bite. For all his criticism of ILADS docs who are willing to prescribe treatments that have not been “proven” in double-blind, placebo controlled trials, I have a hard time understanding why this “treatment” is recommended. The failure rate of even 21 days of doxy is well known to doctors who treat a lot of Lyme Disease and coinfections. Who could reasonably believe that a single small dose would be consistently effective?

  • Solomonsb

    Only follow this advice if you’re ok with being sick for a very very long time. Otherwise, find a Lyme Literate doctor (llmd).

    • Sharisol

      Yes find a lyme literate doctor

  • Anne Berg1

    OMG, 24 to 72 hours? Where do they come up with this stuff? My LLMD puts us on doxy for 28 days if we have a tick bite. Period. Plus a strong probiotic. 

  • ID

    It is important for readers/listeners  to understand the distinction between the measures advocated by self-described “Lyme Literate MDs (LLMDs)” and physicians who practice standard of care medicine.  

    LLMDs may or may not be practicing standard of care medicine as defined by the normative bodies that set standards for general medical practice in the United States. For example, LLMDs may or may not practice medicine as guided by the Infectious Diseases Society of America, the group of physicians who are widely considered to be the experts on the safest, most evidence-based way to approach the management of infectious diseases, including Lyme disease. By visiting an LLMD, people need to know that they risk receiving care that is not standard of care.  The standard of care is not perfect, as physicians are not omniscient or flawless in their practice, but it is the best-faith effort of highly trained experts at improving the health and well-being of people in this country, and it is grounded solidly in the body of evidence that is applicable to Lyme disease management. For those who seek care that is neither standard nor based on the best available evidence, please be aware of the potential harms that may accompany that decision.

    The advice given by Dr. Edlow above is standard of care.

    • Steph

      I completely disagree. LLMD’s are experts in their fields. People go to see a specialist. I wouldn’t go to a standard care doctor for cancer treatment, I would go to a specialist.  YOU’RE STATEMENTS ARE POTENTIALLY HARMFUL!

      • citizen

        FYI: “standard of care” is defined as care provided by any physician that is based on evidence and formally reviewed expert guidelines.  Specialists, such as oncologists (as you suggest), practice standard of care. It has nothing to do with degree of specialty.
         “ID” is right on the money.  Thank you for providing some balance to this controversial issue.  

    • anne.berg1

      The ISDA doc my 11 year-old daughter saw at Mass General was not helpful. We wasted 6 months and a year out of school. He first diagnosed her with post viral syndrome, then chronic fatigue, then fibromyalgia. I mentioned Lyme repeatedly and he discounted it. I told him we live in southern NH and spent summers on the Maine coast (Hello? Tick infested areas?). Wouldn’t test her again (her first test was negative, of course).  

      The ISDA docs are NOT highly trained in Lyme or the 20 co-infections that are tick-related illnesses. I realize that science is grounded in evidence, but it’s obvious to me that they are looking at the wrong evidence.  We ended up seeing a LLMD outside Hanover, NH (not related to Dartmouth Hitchcock). He did a comprehensive exam and asked about her history. She’d had recurring sinusitus, mono and migraine headaches over the past 4-5 years. All these are Lyme indicators. He was quite sure she was suffering from a few co-infections.  She took amox for a few months and she was back to normal, thank goodness. I realize we’re lucky.  Later on I sent the MGH doc a respectful e-mail explaining where we’d been and how she had been treated for a Lyme co-infection. I told him she was cured. He never responded. 

  • http://www.GeorgiaLymeDisease.org/ GeorgiaLymeDiseaseAssociation

    The single dose prophylactic treatment of a tick bite did not prevent Lyme disease in mice.  It prevented a rash from forming and left most of the mice infected but with negative blood tests.   This is a dangerous practice because, as seen in syphilis (another spirochetal disease), too little antibiotic therapy at early onset of the disease may block antibodies from forming (or abrogate the immune response)  causing  a patient to test negative for Lyme disease, but still be infected.  We don’t want a lot of very sick patients walking around with undetectable, untreated Lyme disease.  This disease can cause serious symptoms and permanent damage.    

  • Lymeticktest

    I own and operate MassDeerService, Inc. We are now distributing the first at-home test kits for determing if the tick that just bit you is carrying the bacteria that cause Lyme. Please visit http://www.lymeticktest for more info.

  • Trish

    LLMD’s are saving lives everyday and they are REAL physicians who choose to take on this disease.  The IDSA continues to try to discount their abilities knowing they have the full support of the entire Lyme community and organizations who are on the front lines of TBD’s.  These are the organizations working to research and find better testing and a cure for Lyme even though our own CDC and IDSA should be actively doing the same!

  • paula

    Hi its been a year since i have been bitten, i didnt know at first what it was, as i woke up screaming in pain from the varicose vein at the back of my leg. Four days later a little circle appeared not a bulls eye, near the area where i got the bite. That same day i had severe stabbing throbbing heart palpitations stomach arms and leg with neck gland swelling. My doctor gave me cream and sent me home. I used it and ended up in hospital all blood tests normal but borderline clotting. I was sent home the next day, ive had scans, xrays, blood test after blood test, my thyroid borderline then normal. I am so ill i dont want to face the day when i wake up. I have found a big tick which had latched it self to the frame of the door last year, but i didnt know what it was until i checked it out on the internet. No one wants to know the doctors think im mad, but yet they know something is wrong due to gland swelling and heart palpitations. I dont want to go on like this anymore, i know my own body and something is wrong, what should i do?

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