Surprising 5 Facts I Never Knew About Lyme Disease—Until I Got It Myself

Image result for lyme disease

One morning in the beginning of August, I noticed a tightness in my upper left thigh as I got out of bed.

I had just powered through an intense leg workout the night before, so I wasn’t too concerned. It was probably just soreness, I assumed.

I reached down to try to massage it out, when my fingers stopped at something unexpected—two rubbery, pea-sized lumps an inch or so from the top of my inner thigh.

They were swollen inguinal lymph nodes, a fact I knew since a few other ones had popped up the previous summer.

Back then, my doctor assured me they were nothing to worry about—anything from a tiny cut on the leg to a nick shaving could cause them to swell up, thinking there’s an infection to fight. They eventually went away.

So when these new ones emerged, I figured I’d just give them some time to go back down, too.

But two days later, an oval-shaped, red rash appeared in the same area. It quickly spread to the size of my hand, fingers to palm.

I called my primary care doctor, who was able to squeeze me in for an exam later that day.

The eventual diagnosis: Lyme disease, a bacterial infection that can cause joint pain and other frustratingly non-specific, flu-like symptoms.

That was the beginning of my first-hand crash course on Lyme disease. Turns out, a lot of things most people think about Lyme are just plain wrong.


Each year, around 30,000 cases of Lyme disease—an illness transmitted by the bites of infected blacklegged ticks—are reported to the Centers for Disease Control and Prevention (CDC).

But in many cases, you’ll have no knowledge that a tick even bit you.

In fact, only 30 percent of people with Lyme disease remembered a tick bite, a 2010 study in Clinical Infectious Diseases found. And that was in Wisconsin, a Lyme-prevalent area where people would probably be on higher alert for the insects.

As for me? The possibility of a bug bite causing the rash—let alone a tick bite—never even crossed my mind.

That’s not to say it shouldn’t have: I live in Pennsylvania, a state where about 25 percent of all Lyme cases occurred in 2014, CDC data found.

What’s more, two of my regular running courses included short sections of wooded areas, where ticks like to hang out.

But I never even saw a tick on me—scary, considering that the tick was probably attached to my skin for 36 to 48 hours, the amount of time it generally needs to transmit the Lyme bacteria, according to the CDC.

Turns out, ticks are pretty skillful evaders: Because they like warm, moist areas, they often move to your armpits or groin—spots where they easily escape detection, especially since immature ticks can be as small as a poppy seed, says my primary care doctor, Cynthia Martin, D.O., of the Lehigh Valley Health Network.

bullseye rash lyme


Not only did I miss the tick bite, but I also didn’t think my rash looked like Lyme: It was just oval and red—nothing like the stereotypical “bull’s eye” often associated with the condition.

But while about 70 to 80 percent of people with Lyme disease develop some kind of rash, the bull’s eye rash, which resembles an archery target with red and white circles, is not nearly as common as you may think.

In fact, after analyzing 53 studies, researchers from Beth Israel Deaconess Medical Center concluded that only 19 percent of people with the disease in the U.S. develop a rash with the bull’s eye appearance. (Some people don’t even get any rash at all.)

To the professional eye, though, my rash did look like Lyme: Its large, well-defined area of redness had my doctor considering Lyme from the beginning.

But it wasn’t quite that simple: Other skin conditions, especially cellulitis—an infection characterized by red swelling, where bacteria enter through breaks in the skin—can mimic the rash of Lyme.

And my other symptoms—a low-grade fever, fatigue, and swollen lymph nodes—can be indicative of either cellulitis or Lyme disease, too.

Plus, complicating my situation were two unrelated, small, healing wounds on the periphery of the rash from an injury a few weeks prior.

“Open wounds can often be a portal where bacteria can enter the skin,” says Dr. Martin.

As a result, cellulitis can develop—and my rash appeared to be a pretty strong candidate for it.

So I left the office with a diagnosis for cellulitis, but also with orders for blood work to make sure nothing else was going on, either.

Real fact #3: Diagnosing Lyme disease can be tricky.
diagnosing lyme disease

One of the tests on the order was for Lyme disease.

Diagnosing Lyme isn’t exactly clear cut, so doctors use a two-tiered approach to nail it down: The first is called the enzyme-linked immunosorbent assay test, or the ELISA test.

This test shows how many total antibodies you have for the pathogen in question, which in Lyme’s case, is a kind of bacterium called Borrelia burgdorferi, says John Aucott, M.D., the director of the Johns Hopkins Lyme Disease Clinical Research Center.

But it’s not perfect—it can produce a good chunk of false positives, meaning people show antibodies even if they are not infected with Lyme, he says. (This can be due to other infections like mono, bacterial stomach ulcers, or even autoimmune disorders like lupus.)
So when my ELISA test came back positive, doctors had to take one more step before confirming a Lyme diagnosis: the Western Blot test.

This test looks at the antibodies your body makes to several different specific proteins of the Lyme bacteria. It weeds out most of the false positives seen with the ELISA test.

The Western Blot detects two classes of antibodies: the IgM, which appear soon after infection, and the IgG, which can take up to 4 to 6 weeks to show up.

My Western Blot came back positive for antibodies in the IgM class—showing that my infection probably occurred within a four-week period before the test, says Dr. Aucott.

Real fact #4: The treatment for Lyme can make you feel worse than the disease.
treatment lyme disease

My doctor prescribed the standard treatment for Lyme disease caught early—100 milligrams (mg) of an antibiotic called doxycycline twice a day for 21 days.

I took my first dosage the night I was diagnosed. The next morning, I felt way worse than before.

My head throbbed, my stomach cramped, and my fatigue increased.

I remember consciously trying to avoid turning my head: It seemed to take way too much effort, and I also knew it would end up creating a pounding so sharp it’d leave me sick to my stomach.

It wasn’t that my Lyme was getting worse: I learned that my symptoms might have been caused by something called the Jarisch-Herxheimer reaction, a condition which occurs in roughly 15 percent of people after taking their first antibiotic dosage for Lyme treatment, says Dr. Aucott.

It actually can be considered a good thing, since it shows your meds are working.

When the antibiotics begin to kill off the Lyme bacteria, the dead bacteria release proteins that trigger inflammation, says Dr. Aucott.

As a result, you can experience new or worsening symptoms, like fever, chills, or achiness. The reaction only lasts a few days, he says.

In my case, the first two days after I started the doxycycline were definitely the worst: Afterwards, my symptoms—minus the rash, which disappeared within a couple days of treatment— returned to pre-antibiotic levels.

Real fact #5: The fatigue with Lyme disease is no joke.
fatigue lyme disease

This past spring and early summer, I’d been on a fitness upswing: I was lifting 5 or 6 days a week—continually adding heavier weight to my workouts—and running at least 3 to 4 miles almost every day.

Then, by mid-July—right around the time I suspect I was bitten—I hit a wall.

Running one mile felt like 5. Weights I could easily press by myself the week before were suddenly at risk of smashing me in the face.

I even remember consciously choosing to do one exercise over another because it used a bench—and I could lie down on it after I was done for my “rest.”

I figured I might just have been pushing my body too hard, so I dialed it back a little to give it time to recover.

But when my Lyme test came back positive, it was actually a relief to know my body was stalling for a reason.

I wasn’t alone: The exhaustion you can feel with Lyme is often much more severe than with other fatigue-causing illnesses, says Dr. Aucott. And it could come on well before the Lyme rash shows up.

That fatigue—along with the related weakness and lack of endurance— was probably my most-pressing Lyme symptom, and it stuck with me throughout most of my treatment.

The gym wasn’t the only place I felt it: My transitional stand-up desk at work remained in the sitting position. I cleared my weekends so I could fit in long naps.

Unfortunately, though, the sleep didn’t help much. I went to bed with the fatigue and achiness, and woke up with them the next morning



If You Think You Have Chronic Lyme Disease, Most Doctors Say You’re Wrong


Mavis Kelly was diagnosed with multiple sclerosis a few years ago, but after seeking out a “Lyme literate” doctor, she says she actually has chronic Lyme disease, which the doctor says is an indefinite bacterial infection that hides in the body and must be controlled with antibiotics and other therapies.

Gideon Baugher says he also has chronic Lyme, and he spent more than $35,000 on treatments last year alone.

But according to the majority of doctors and medical groups, there’s no proof chronic Lyme disease is real, and they charge that the so-called “Lyme literate” doctors who diagnose and treat it with years of antibiotics and other unproven therapies are quacks, and that they’re taking patients — and their wallets — for a ride.

“Many people who like to use the term ‘chronic Lyme’ feel that there’s a hidden persistent infection that is long-term,” said Dr. Paul Auwaerter, the clinical director of the division of infectious diseases at Johns Hopkins. “There’s really a scarcity of data to back up that part of the proposition.”

What’s more, Auwaerter said he regularly sees patients who’ve spent $10,000 to $20,000 on antibiotics and herbal supplements prescribed by Lyme literate doctors who charge “concierge-style” prices. He often finds that they never had Lyme and had an entirely different health problem that wasn’t being treated.

Related: When Medicines Turn on You: Antibiotics Leave Patients With Psychosis, Stroke-like Symptoms

Lyme disease is caused by the bacterium Borrelia burgdorferi, and it’s spread via bites from infected black-legged ticks, according to the Centers for Disease Control and Prevention. There were 25,359 confirmed Lyme disease cases in 2014, according to the most recent data from the CDC.

The CDC also says the disease is curable. The National Institutes of Health, the American Academy of Neurology, the American College of Physicians, the American Academy of Pediatrics, and the Infectious Diseases Society of America all agree. Even if symptoms linger after treatment with antibiotics, the bacteria goes away, and studies have repeatedly shown that continued, long-term antibiotic therapy does nothing to alleviate symptoms. The most recent was published just last month in the New England Journal of Medicine.

A group of mostly primary care physicians, who call themselves “Lyme literate” doctors have bucked these medical institutions, and say that for people with what they call “chronic Lyme disease,” the bacterium never really goes away and can cause a range of different symptoms for different people — even if they never test positive for Lyme disease via the standard tests.

Kelly, 46, of Virginia, was diagnosed with MS nearly a decade ago after doctors found lesions in her brain and she experienced double-vision, tingling, numbness, headaches, confusion, and a drop-foot. She sought a Lyme literate doctor after hearing about chronic Lyme on the radio.

Baugher, 77, of Maryland, was diagnosed with Lyme but still felt “sick as a dog” after his antibiotic course ended. After experiencing continued “burning” pain and itchiness, he sought a Lyme literate doctor at the suggestion of people who went to his church.

According to the CDC, early Lyme disease symptoms can include fever, chills, a rash shaped like a bull’s eye, a swollen knee, fatigue, and achy muscles and joints. If the illness is left untreated for more than a month, however, its symptoms can include more severe joint pain, drooping on one or both sides of the face, confusion, irregular heartbeat, nerve pain, and severe headaches.

Kelly’s Lyme literate doctor was so solidly booked, it took Kelly four months to get an appointment, which cost $700.

“He doesn’t need to take insurance,” Kelly said, adding that her drug plan covered many of her antibiotics, but not the herbs and other treatments the doctor prescribed. “People are willing to pay whatever the cost… People meandering, trying to figure out what the hell is wrong, are just so happy to have someone who actually gets it.”

It took Baugher three months to get an appointment with his Lyme literate doctor, who also did not take insurance.

They’ve both been on either oral or intravenous antibiotics for years.

“You name it, I’ve been on it at one point in my life,” Kelly said. “All the different medicine just gets to be a little bit like it’s taking over your life. For me, it’s manageable.”

Related: Antibiotic Resistance Is a Public Health Nightmare — And It’s Not Going to Stop

Kelly’s Lyme literate doctor, Dr. Samuel Shor, president of the International Lyme and Associated Diseases Society, which has pushed for recognition of chronic Lyme, says the problem is that mainstream doctors don’t want to believe in chronic Lyme.

“You’ve got clinicians who don’t want to believe that this is within their rubric of specialty because they can’t see the data,” Shor said. “Unfortunately, a lot of folks, like myself who were forced to practice the art of medicine, believe what [patients] have to say for the most part, putting things together in a way that isn’t rock solid. It’s nuanced.”

But in addition to being ineffective against symptoms associated with chronic Lyme, long-term antibiotics have been shown to result in various negative health effects, including kidney stones and yeast infections resulting from altered bacterial populations, said infectious disease specialist Dr. William Schaffner, chief of preventive medicine at Vanderbilt University Medical Center.

In a 2000 case study, a 30-year-old woman died after treating her chronic Lyme with intravenous antibiotics for 27 months. A month after stopping the antibiotics, she suffered a seizure and went to Mayo Clinic in Rochester, Minnesota. There, doctors determined that she had no signs of Lyme. She had developed an infection and died within a day.

Case studies have shown that patients who are diagnosed with chronic Lyme are later found to have other health problems, such as fibromyalgia. A case series published in the Journal of the American Medical Association last year included three patients who were prescribed long term antibiotics by “Lyme literate” doctors and actually had cancer, instead. One of them had stage IV Hodgkin’s lymphoma, which killed him two years later.