If You Find A Tick: Why I Resorted To Mooching Pills To Fight Lyme Disease

A March 2002 file photo of a deer tick under a microscope in the entomology lab at the University of Rhode Island in South Kingstown, R.I. (Victoria Arocho/AP)

A March 2002 file photo of a deer tick under a microscope in the entomology lab at the University of Rhode Island in South Kingstown, R.I. (Victoria Arocho/AP)

I’ve never done anything like this before. I’m a good little medical doobie. I’m wary of pills, take them only with prescriptions, and follow the instructions to the letter. But last month, I “borrowed” a friend’s extra 200 milligrams of doxycycline — the onetime antibiotic dose shown to help prevent Lyme disease soon after a prolonged tick bite.

What brought me to that desperate point? A doctor declined to prescribe the pills, even though this is prime Lyme disease season and the patient, my family member, fulfilled every one of mainstream medicine’s requirements for the single dose aimed at preventing Lyme. To wit:

• The tick was a fully engorged deer tick that had been attached for more than 36 hours.

• We sought treatment within three days of removing it.

• The tick came from a Lyme-endemic area.

• And the patient had no medical reason to avoid antibiotics.

The antibiotics I “borrowed” from a generous friend (Carey Goldberg/WBUR)

The antibiotics I “borrowed” from a generous friend (Carey Goldberg/WBUR)

But still. The doctor argued that the chances of contracting Lyme from the tick were very small, perhaps 1 in 50, and that overuse of antibiotics contributes to the growing problem of drug-resistant bacteria. This is what he would do for his own family member, he said: skip the doxycycline, wait to see if Lyme develops, and treat it with a full 10-day course of antibiotics if it does.

I was frustrated and frankly a bit appalled. WBUR ran a series on Lyme disease in 2012, and I knew that controversy raged around many aspects of the disease, particularly the use of long-term antibiotics to treat long-term symptoms. But I was just trying to follow the widely accepted guidelines written by the Infectious Disease Society of America, to be found in reputable medical venues like UpToDate. And I knew from that same series that Lyme is rife in New England, and so are personal stories of health and lives ruined or seriously harmed.

Still, maybe I was overreacting? I’ve since sought a reality check from three experts, including the lead author of the guidelines. And here’s what I come away with: No, I was not unreasonable in seeking the preventive doxycycline. Arguably, though I hate to admit it, the doctor was not being totally unreasonable in declining it. The guidelines say a doctor “may” prescribe the antibiotic; it’s not a “must.”

In the end, I think, the crux of the question may lie in how you see the doctor’s role: Is it to lay out the risks and benefits and then let the patient choose? Or to impose his or her own best medical judgment on the patient? (You can guess where I come down on that one.) Also, “better safe than sorry” tends to rule when it comes to my loved ones. But what if the risk is small and the benefit uncertain?

A 2102 map of Lyme disease risk, released by the Yale School of Public Health. Massachusetts is high-risk territory. (AP)

A 2102 map of Lyme disease risk, released by the Yale School of Public Health. Massachusetts is high-risk territory. (AP)

I spoke first with Dr. George Abraham, governor of the American College of Physicians for the state of Massachusetts, a practicing primary care physician and infectious disease specialist, and a professor of medicine at UMass Medical School:

He described the preventive use of doxycycline if all the guideline requirements are met as “Good medicine — scientifically based, it is absolutely sound.”

So why might a physician refuse, and is such resistance widespread?

“There might be a minority of physicians who still feel it might be inappropriate for one of two reasons,” he said. “Either concerns of antimicrobial resistance — although a single dose of antimicrobials is very unlikely to breed resistance, so that might be a bit unfounded — or just lack of awareness.”

I confessed my pill-cadging peccadillo and he responded that it is simply not good medicine to use somebody else’s prescription. “But I think the moral of the story is, if the person in question knows that they’re appropriately asking for an agent and don’t get it, I would seek a second opinion, see a different physician, use a local emergency room,” he said. “Most emergency rooms are pretty savvy on this, just because they deal with this on a more frequent basis. Or even ask for a referral to an infectious disease specialist. It should be relatively easy. But the short answer is, there are ample other ways to get the medication.”

I spoke next with Dr. Alfred DeMaria, medical director for the Bureau of Infectious Disease of the Massachusetts Department of Public Health. He listened to my tale and began with the evidence base:

“There’s one published study on which the recommendations are based and that was a study — I think there were 200 to 250 people in each group, where they treated some people with 200 milligrams of doxycycline after tick attachment and others with placebo. And they found for the people who had an engorged tick — not for people who just had the flat tick attached, for people who had the engorged tick, where the estimation was that the tick could have been attached up to 24-to-72 hours — there was a reduced likelihood of Lyme disease developing if they got the 200 milligrams of doxycycline. Of course, there was also a 30 percent adverse reaction in those who got the doxycycline. I think that needs to be incorporated into the decision. But ultimately it’s the only study that has shown that.

It’s generally felt that if it’s an engorged tick, there are two options: One is to treat with 200 milligrams of doxycycline and watch for Lyme disease. Or just watch for evidence of Lyme disease in terms of a rash. That’s sort of what the recommendation is on our website.

“Five percent of ticks on one side of the road might be infected, and 50 percent on the other side of the road.”

I think what happens is, there are competing concerns about drug reactions and about antibiotic resistance which counterweigh the decision to use the  doxycycline, although 200 milligrams of doxycycline is not a lot of antibiotic therapy. But I think sometimes what happens in the community is that people have a tick attachment and no matter how long it’s attached, they wind up on two weeks of doxycycline, which is really not recommended.

The other thing you have to consider is the risk of an individual tick being infected. What’s good there is that we have Dr. Steve Rich at UMass, who’s been testing ticks, and people on Cape Cod who’ve been testing ticks, and infection rates can vary from year to year, from place to place, anywhere from 5 percent to 50 percent of the ticks. What we’ve learned from some people on the Cape is: They collect ticks from the same place every year, and from year to year it can vary from 5 percent to 50 percent. And it can be 5 percent on one side of the road and 50 percent on the other side of the road. It is highly variable.

The worst probable chance is a roughly 50 percent chance the tick is infected, but that also doesn’t mean every tick that’s infected is going to transmit the disease. So it’s a complicated situation, and I can understand a clinician going one way or another.

I think in an ideal situation a clinician would discuss it with a patient and they would make a judgment about how much risk they wanted to take and come to a conclusion that way. Unfortunately, the health care delivery system does not allow a lot of time to do that. But I would understand why a clinician would be resistant to doing it and I can understand why a clinician would want to do it under the circumstances that we recommend considering it.

It truly is a judgment call. I think some people would argue if the chances are only 1 in 10 or 1 in 20 that you’ll get Lyme disease from that tick, you could watch for signs, because early treatment is highly effective, and you could avoid unnecessary antibiotic use. That’s why we sort of say you should consider either option.”

One thing is clear, Dr. DeMaria said: Lyme disease is a huge problem and “this is prime time,” when the young “nymph” ticks are out looking for their “blood meals.” So “the best course of action is to avoid ticks, or do those tick checks.”

For a final word, I spoke with Dr. Gary Wormser, lead author of the IDSA guidelines and chief of infectious disease at New York Medical College. He, too, listened to my tale, and then began with how the team at the Lyme Disease Diagnostic Center at New York Medical College would have reacted:

“If you came to us and said you had the tick bite but didn’t have the tick with you, [then we'd advise] no prophylactic antibiotics. If you had come to us with the tick and we could confirm it was actually a deer tick and it was on you for at least 36 hours, the prophylaxis could be started within 72 hours of tick removal and there were no contraindications to taking doxycycline, we would have offered you the 200 milligrams prophylactically, informing you that it would not necessarily be 100 percent effective and you should still be wary of the possibility of getting Lyme disease and/or other tickborne infections. I don’t know the infection rate of deer ticks where you were, but in our area now 25 percent of the nymphal stage deer ticks are infected.

“We’ve had all kinds of things brought in to us, from scabs to thorns to beetles to pubic lice.”

We have a lot of people who come in here and say they have engorged ticks and then we actually look at the tick, and it isn’t even a tick, or if it’s a tick it’s not a deer tick. We’ve had all kinds of things brought in to us, from scabs to thorns to beetles to pubic lice — you name it, we’ve seen it. And also, the patient’s concept of whether it’s been on for at least 36 hours isn’t very accurate, in our experience.

So it is a little bit tricky. That’s why the IDSA guidelines actually say that routine use of antimicrobial prophylaxis is not recommended, and only under very special circumstances would it be recommended. And so if a person met all those circumstances, we would do it. I think it’s a very interesting question about the long-term implications in terms of antibiotic resistance, which we’re all having to deal with on a day-to-day basis as infectious disease doctors, but in terms of the individual patient with a tick bite, we’re still offering prophylaxis under those very specific circumstances.

Keep in mind that pregnant women and children under 8 aren’t eligible for the doxycycline. And we don’t think it’s 100 percent effective either. So in other words, it would be a little misleading to people at times to believe that it’s 100 percent effective. It isn’t.

Let me give you some statistics you may not be aware of: The fact that you found the deer tick means the odds overall of getting Lyme disease, having done nothing more than finding the tick, are 2.2 percent. If you take doxycycline, the risk of Lyme disease goes from 2.2 percent to 0.8 percent. But the confidence interval — the range of potential possibilities — varies from .02 percent to 2.1 percent. So in other words, it has been shown to be effective but unfortunately the study that was done, which was a pretty large study, wasn’t large enough in terms of numbers of cases of tick bites that were prevented to narrow down the exact efficacy rate. It was 87 percent effective but it could have been as low as 25 percent effective based on pure statistical variation.

So it’s very important to understand the limitations. We know it has some efficacy and we know it’s not like giving a full course of antibiotics. There are data that if you gave patients a 10-day course of antibiotics it would be essentially 100 percent effective. We knew that was being done, but we just didn’t recommend it because, why would you want to treat every tick bite as if the patient actually already had Lyme? The beauty of this [200-milligram dose] was that it’s only a single dose and it has, at least in the study that was done, over 85 percent efficacy. It’s just that we couldn’t be precise, we couldn’t give a precise efficacy rate in what we call the 95 percent confidence interval surrounding the actual efficacy, meaning it could be less effective than that.”

Dr. Wormser confirmed that the preventive doxycycline is a reasonable approach, if you fulfill the requirements. And some more reassurance: Just finding the tick means you’re ahead of the curve.

“There are two ways to look at this,” he said. “One way is to say that if the efficacy study we did was 100 percent accurate, that you have an 87 percent further reduction in the risk of getting Lyme disease. Or you can look at it this way: It’s 2.2 percent risk going down to 0.4 percent or in that range. So if you look at it in those absolute percentages, it doesn’t seem as dramatic.”

I must say, those numbers calmed me down quite a bit. But even a small chance of a frightening possible outcome seems worth trying to head off.

Dr. Wormser understood. “First of all, everything to do with Lyme disease is anxiety-provoking,” he said. “That’s the nature right now of the reputation that this disease seems to have. So that’s one of the reasons we offer this service, in part — not that we think it’s the end of the world if the patient should get a rash at the site of the tick bite, because then we just give them 10 to 14 days of an appropriate antibiotic and everyone gets better. It’s just that given the circumstances — the reputation and implications that people have drawn about this disease, whether they’re accurate or not — it has caused so much anxiety and concern for many people that we’re happy to offer the service of telling them yes, you might benefit from the 200 milligrams.”

Well, if we lived in New York, I’d have been happy to receive that service for my family member.

Readers, what would you do? Say you meet all the requirements, would you want the single dose of antibiotics? How far would you go to get it?

Further Reading:

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  • whisperingsage1

    Try tetracycline- you can get it over the counter for fish or livestock at the feed store; This research said tetraccycline came out better after 1 yr in a trial between doxy and tetra; http://www.ncbi.nlm.nih.gov/pubmed/7829706
    Other than that, golden seal is an OTC potent herbal, and lomatium also.

  • Allison

    As somebody who has studied antibiotics and their ceaseless prevalence in our bodies and food system, we simply cannot afford to worsen the problem of antibiotic resistance. I have experienced firsthand the results of developing an antibiotic resistant gut flora due to previous antibiotic use, and the results are sometimes deadly (if there’s no antibiotic strong enough yet). Long story short, I almost died. There are some bacteria that are resistant to everything we have right now, and who knows whether science will be able to match the growth of superbugs that we struggle to contain.

    • Lawrence

      When will we learn that the antibiotic problem is a real one and has been discussed since the 1960s.

      Hysterical, emotional, fearful reactions make people want pills even if they do not have any symptoms of disease.

      • TJtruthandjustice

        Did you people even read the article? Antibiotic resistance is largely the fault of the medical industry. Doctors regularly prescribe long courses of antibiotics for viral colds and flu, earaches, and all sorts of other maladies for which the science says antibiotics won’t do any good. Long courses of tetracycline lasting months or years for skin conditions are common. In this case, we are talking about taking a SINGLE 200 mg dose of doxycycline immediately after a tick bite that might have occurred more than 12 hours before discovery. The science shows that this may be an effective way to prevent lyme, thereby avoiding the need to a longer course of antibiotics lasting for weeks. Your have a problem with THAT? Seriously?

        • Lawrence

          If you ask any medical doctor, they will tell you that the problem with antibiotic resistance is due to the PATIENTS, worried moms, and paranoid people who DEMAND antibiotics. When right-minded doctors decline, patients often “doctor shop.”

          And yes, you’re right some doctors themselves have over prescribed it for decades.

          It’s the typical patient attitude for decades just like this authors neurotic, emotional and fearful reaction that drives her to desperately seek drugs for a condition she is not even diagnosed with; “just in case.”

          • TJtruthandjustice

            Lawrence, either you are a troll or you aren’t reading this very carefully. Do you happen to know anyone who has had Lyme disease? Do you realize how serious a disease it is? Do you understand how notoriously inaccurate the diagnosis tests are? Do you know that the longer you wait to treat Lyme, the more serious it becomes? Do you believe in science and the scientific method? If established research shows that you can greatly reduce your chances of getting Lyme disease after a tick bite by taking 200 mg of doxycycline, the “neurotic, emotional and fearful reaction” would be to NOT take the pill.

          • TJtruthandjustice

            During the 2013 flu season, more people needed antiviral medications than got them, and antibiotics were inappropriately given to a large proportion of patients with influenza (a viral disease that is not helped by taking antibiotics), according to a new study.

            The researchers found that nearly 30 percent of the flu patients who were treated during the 2012-2013 influenza season may have been prescribed unnecessary antibiotics instead of antiviral therapy.

            http://www.livescience.com/46851-antibiotics-wrongly-prescribed-influenza-cdc.html

  • ljarnone

    Mooching pills exposes the moocher and moochee to potential risks associated with over use of antibiotics. The moochee doesn’t get a full dose of their treatment leaving them susceptible to ‘breeding’ resistant bacteria and the moocher is giving or taking an antibiotic with all the risks associated with self medication. It is best for all of us if we just simply trusted those people who have the authority, education and experience to prescribe medications for us to treat us. It is easy enough to get a second opinion. Self treatment based on emotions is a very dangerous plan of action for everyone not only those directly involved as the original doctor points out.

  • Anna

    I had Lyme disease in 1997. The symptoms started within 24 hours of removing the tick. The key piece of evidence that is missing in this story is the lack of symptoms. You don’t need to take anti-biotic’s if the tick that bit you doesn’t carry Lyme disease. Not every tick is a Lyme disease carrier.

  • Liz

    The prophylactic use of a single dose of doxycline is not going to be effective against Lyme Disease.
    http://www.mainelyme.org/i-have-a-tick-bite-what-to-do-now/
    http://campother.blogspot.com/2012/03/one-pill-of-doxycycline-is-not-enough.html

    Additionally, it will do nothing to prevent a co-infection, which are more and more common.
    They are happy to provide years of doxycycline for acne but won’t give you 30 days to prevent a disease that, given time, wreaks havoc on your entire body?

  • Leigh Poindexter

    I am currently on doxycycline 100 mg twice per day that i started 4 days after severe joint aches, molar teeth pain when chewing, chills, fever of 100 up to 103, and the mysterious presence of a large spreading red area on my upper inner thigh. All if this occurred a few days after i had removed engorged Lone Star and American Dog ticks from my large dog bare handed and got blood on my fingers. I promptly washed my hands. The severe aches moved to head and neck, but after 3 days i seemed to get better on my own with just rezt. My physician was not tick savvy, but i felt i had too much evidence of a tick-borne illness, pissibly STARI to be specific. He at least agreed to call in the doxycycline fir 2 weeks as i suggested. I am considering doing an additional week to two weeks based on what Lyme disease doctors would order. Hope I’m doing the right thing here. I didn’t want to risk a recurrence, or any potential coinfection.

  • NHDad

    There are two sides to a story. I do not have blind faith in doctors, but to be fair and objective, we don’t have the original doctor’s input on this; there may be more to the doctor’s decision than the patient is aware of in regard to not being prescribed the doxycycline . The patient was a “family member” of the writer. Was the writer actually present to hear all of what the doctor said, or is this a second hand account? Is this a case of an over zealous protective relative? Could the doctor possibly have access to more data and experience concerning tick treatment than the writer knows about?

    I also wonder how a friend just happened to have had an “extra” dose of what is supposed to be a ‘one time use’ prescription pill on hand. That indicates the strong possibility of too many of these pills circulating around and being overused unnecessarily, thereby weakening the effectiveness of the treatment and strengthening the strain of the disease. This could be a sound reason for the doctor being hesitant to prescribe it in the first place when the odds of having been infected were very low.

    My feelings are that a qualified second opinion would have been a better and safer choice than giving an un-prescribed prescription pill to a family member, especially if the family member is a minor.

    • careyg

      Dear v425 — Thanks so much for your comment. To clarify: The family member was not a minor. I did indeed hear the doctor’s explanation only second-hand, and yes, I did think he could have more knowledge on the issue than I did — that’s why I sought out leading experts who were sure to have the most knowledge for their opinions. The friend had the pills because they were prescribed for a condition that can flare up — it just hadn’t recently. And part of my trouble was the time-frame — the preventive doxy has to be given quickly, and going to an ER for such an issue means hundreds of dollars. Was I being over-zealous? Well, I think that’s a central point: I was understandably more scared of that small risk of my family member’s health being ruined than that doctor was. If my request was reasonable – which the leading experts say it was — maybe the doctor should have respected it….

  • MLaBonte

    Having had Lyme Disease, the next time I found a tick embedded I did see a doctor, thinking he would make an informed decision about whether to test and/or treat. Instead, he pulled the keychain out of his pocket, used the tick remover on it and sent me away.

    At this point though I think I would not press for prophylactic treatment, but only because I know of two doctors who eschew AMA Lyme guidelines and are serious about treating Lyme. It took me a while to find them. As long as doctors who understand Lyme and the tests are standing by, I’m willing to take a chance and see what happens. Otherwise I would fear that once I suspected Lyme, a cycle of misdiagnosis and non/mistreatment would begin, and possibly go on for some time. I know from experience how painful that is.

  • Alicair

    I think this is a case study in medical anxiety vs. medical trust, right? We can trust our doctors until they give us advice we don’t like. Some of us are more accomplished “citizen scientists” than others, and the editor of the CommonHealth blog on NPR is definitely in the accomplished category when it comes to resources. But as humans, we tend to be susceptible to fear. The Lyme Disease narrative is a horrifying one and it’s hard to put numbers in the proper context when you can picture a loved one suffering a similar fate as the horrible story you read on the Internet.

    I think doctors have a responsibility, not just to their individual patients, but to public health in general, not to over-prescribe antibiotics. Drug resistance is a serious and escalating problem in infectious diseases. However, a small dose to someone who meets the requirements comes with very little risk and the reward of lessening the patient’s anxiety.

    For the long run, if you can develop a long-term trust relationship with a general physician, I think it’s best to let them decide the best course of action. And sharing pills is almost always a bad idea. Unless they’re really good…anybody got some? :)

    Alicair Peltonen

    • rosariopwetzler

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      about 22 months and at present repayed the mortgage on their appartment and
      bought themselves a Chrysler . see here C­a­s­h­f­i­g­.­C­O­M­

    • TJtruthandjustice

      I’m sorry, but if I can cite peer-reviewed medical research telling me that it’s efficacious to take 200 mg. of doxycycline after being bit by a tick and my doctor disagrees with its findings, he better have a damn good reason why aside from “trust your doctor.” That just doesn’t cut it anymore.

  • Joe Murphy

    I think there is something to be said for the original doctor. We all think that antibiotic resistance is a growing problem, but many of us want the doctors to dial down the prescribing on OTHER people. I don’t think taking someone else’s prescription was the right course. If I were that unsatisfied, I’d have gone to another doctor, urgent care, or ER. Either way, I am glad the author is not sick.

  • TJtruthandjustice

    The doctor is an idiot. The tests are notoriously inaccurate. The longer you wait with Lyme, the worse. Your request was completely reasonable, and even if he disagreed with your decision, he should’ve yielded to it. Get another doctor!

    • Anna

      You don’t need a test; you needs symptoms. They happen quickly. There is no danger in waiting 24-48 hours for symptoms to appear. Then you have a reason to treat with anti-biotics. Not all ticks carry Lyme disease. The headaches, joint and spinal pain, low grade fever and light sensitivity are quite obvious will tell you within 48 hours whether your tick was a carrier.

      • TJtruthandjustice

        Your information is completely wrong. It can take up to a month for symptoms to appear. You aren’t doing anyone any favors by spreading false information.