Exactly What You Should Do If You Think You Have Lyme Disease—From Someone Who Has Had It

Consider this your post-tick bite checklist.

June 2, 2017
tick bite with bullseye rash
Smileus/ Getty

Lyme disease is a b*tch. I can say this because I’ve had it and it’s awful and I wouldn’t wish it on my worst enemy. And this year, you’re more likely to get it than ever before—thanks to the booming population of mice, which carry Lyme disease and pass it along to 95% of deer ticks (aka black legged ticks). 

Which means, of course, that you should be doing everything you can to prevent it, like employing these smart tactics to keep ticks out of your yard, and using repellents that contain at least 20% DEET on your skin and 0.5% permethrin on your clothing and shoes, as recommended by the CDC. (Consumer Reports gave top marks to Sawyer Picaridin and Ben's 30% Deet Tick & Insect Wilderness sprays for their tick- and mosquito-repelling oomph.)

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That said, some of you will be (or already have been) bitten by a deer tick and get Lyme disease—in which case you need a game plan. 

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One very important thing to understand, though, is that your symptoms and course of action will be different depending on how long you’ve had Lyme disease—e.g. if you’ve contracted it very recently ("acute Lyme") versus having it for months or even years without realizing it (late-stage or "chronic Lyme"). 

Here, we break down exactly what you should do in each instance—whether you think you have acute or chronic Lyme—to increase your odds of successful diagnosis and treatment.

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bullseye rash
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If  You Think You’ve Just Contracted Lyme Disease…

Symptoms for acute (recently contracted) Lyme may include fever, chills, sweats, muscle aches, fatigue, nausea, joint pain, facial drooping, and a bull’s-eye rash—but not everyone experiences these. Some research shows that as many as 50% of people with Lyme never experience the rash. But if you do know you’ve been bitten by a tick recently and/or if you've experienced these symptoms, here’s your best course of action: 

1) Save the tick and get yourself to a doctor ASAP

Get to your family doctor or an urgent care clinic as soon as you can. If you actually find a tick attached to your body, remove it properly—experts recommend using tweezers or a tick-removing card to pull the tick away by its mouth using a quick upward motion—and save it or take a picture. (And don’t even think about using any wacky home remedies to remove ticks like peppermint oil.) Not all ticks carry Lyme disease, but all carry some form of disease or infection. So if you keep the tick, your doctor can help identify your risks.

Related: Why 2017 Is Going To Be A Really Bad Year For Lyme Disease (And How To Protect Yourself)

2) Request a Lyme disease test and (in some cases) antibiotics

If the tick that bit you turns out to be a deer tick and/or you have a bull’s-eye rash, your doctor will likely recommend a course of antibiotics such as doxycycline—if they don’t, then ask. When given immediately, this is often all you need to prevent Lyme from progressing. 

If you don’t have the tick or a bull’s-eye rash, doctors are more reluctant to dole out antibiotics automatically. In this case, if other symptoms indicate that you may have Lyme disease, request a Lyme test. If positive, you will likely be given the standard 2-4 week treatment of antibiotics. 

If your test is negative, ask your doctor to test again—the available blood tests for Lyme aren’t always accurate. If it comes back negative a second time, that still doesn’t necessarily mean your Lyme-free.

3) Continue to monitor your symptoms carefully

Regardless of whether your test came back positive or negative, or whether you were treated with antibiotics or not, you still need to be diligent about monitoring your symptoms, alerting your doctor if they persist, worsen, or if you develop new ones. 

That’s because, for one, your test may have been a false-negative; and two, even after the recommended course of antibiotics, up to 20 percent of unlucky Lyme patients continue to have symptoms, which the CDC now refers to as Post-Treatment Lyme Disease Syndrome, or PTLDS. Experts say it’s unclear why this happens in some people and not others. 

If symptoms persist or worsen and your current doctor is unwilling or unable to help you, see the section below. 

Related: Lyme Disease Isn't The Only Tick-Borne Disease You Need To Worry About This Spring

joint pain from chronic lyme
Wavebreakmedia/ Getty

If  You Think You've Had Lyme For A While...

Symptoms of late-stage, chronic Lyme may include fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, anxiety, nerve pain, and neurological problems, among many others. In my case, I had Lyme for about two years without knowing it, and my main symptoms were joint, tendon, foot, and nerve pain, and anxiety. If you suspect chronic Lyme, diagnosis and treatment can be a bit tricker and take longer, but taking these actions can help:

1) Consider seeking out a “Lyme literate doctor”

You should always start with your regular doctor, but you need to understand the limitations of this. As mentioned above, Lyme tests can be inaccurate and, in my experience, many doctors (at least the ones who haven’t made Lyme their specialty) are quick to accept a negative test result and send you on your merry way. And if you do happen to get a positive result, chances are the 2-4 week standard antibiotic treatment that most doctors employ won’t effectively treat the Lyme disease that’s been attacking your body for months or even years. 

That’s why, after three negative Lyme tests from conventional doctors and two years of mystery symptoms, I decided to seek out what’s known as a Lyme literate doctor (LLMD) affiliated with the International Lyme And Associated Diseases Society. These doctors are Lyme specialists, often having gotten into the specialty after a personal brush with Lyme disease.

My own LLMD was once an emergency room physician until his Lyme symptoms confined him to a wheelchair. His doctor at the time misdiagnosed him with amyotrophic lateral sclerosis (ALS), a nervous system disorder for which there is no cure (Lyme is often called "the great imitator" because it looks like so many other diseases). Thankfully, he refused to accept this and sought out a number of other opinions until he found a doctor who eventually diagnosed and treated him for Lyme disease.  

LLMDs typically send blood work to labs like IGeneX in Palo Alto, CA, where they do a more comprehensive version of the Western Blot test. They also take your entire medical history into account, understanding that symptoms manifest in a variety of different ways for different people, and that the CDC's standard 2 to 4 week antibiotic treatment protocol often isn't enough for patients to make a full recovery.

Some LLMDs take a more natural, holistic approach (treating Lyme with herbal supplements, or a combination of herbs and antibiotics), while others stick to antibiotics only. Personally, I’ve known people who have had success with both, so look for a doctor who most aligns with your values. (Click here to find an LLMD in your area.)  

Related: The Terrifying Truth About Lyme Disease

2) Create a detailed timeline of your symptoms 

Because, at this point, you don’t have a tick or a rash to help confirm that you have Lyme disease, your doctor will need as much information as possible to diagnose you and start treating you. So do yourself a favor and prep before any appointment you have, making a list of any odd symptoms you’ve had and when they started, how often they flare up, or if anything in particular seems to aggravate them. Until I did some research, I never knew that pain in my heels or shooting nerve pain up my legs could be symptoms of Lyme. For a refresher on symptoms can be associated with late-stage, chronic Lyme, check out this list

3) Connect with other Lyme patients

The road to recovery from chronic Lyme disease can be a long one and feel extremely isolating, so don’t try to go it alone. Consider reaching out to a local Lyme support group—they’re more common than you think, and you can find one in your state here. Throughout my treatment, I attended a weekly mediation group. I also found a very active Lyme message board full of awesome people with whom I could discuss my symptoms, ask questions, and generally commiserate until I was well again. 

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