It Took Doctors 20 Years to Diagnose My Lyme Disease—Here’s What I Wish I Knew During That Time
Even as a 5-year-old, I knew something wasn’t right. After spending the summer romping around in my favorite brambly woods, I experienced leg pain that left me unable to walk. My pediatrician tested me for a number of ailments, including Lyme, and all the results came back negative.The diagnosis was growing pains, and two weeks later, the aches disappeared as suddenly as they arrived.
Throughout the next two decades, I’d undergo this same song and dance a handful more times: blood test, negative results, rinse, repeat. When I was 9, something was wrong again, and I visited specialists for chronic headaches, vertigo, and motion sickness only to be told, again, that nothing’s wrong. By the time I was a teenager, regularly sick to my stomach, anxious, and weighed down by chronic fatigue, I lost the zeal to advocate for myself to a doctor who considered me a hypochondriac. Whatever was wrong with me could only be my fault, and it was my job to muscle through it. And since no one outside of my family knew I felt a sick all of the time, I’d say I was pretty successful.
By the time I was a teenager, regularly sick to my stomach, anxious, and weighed down by chronic fatigue, I was lost the zeal to advocate for myself to a doctor who considered me a hypochondriac.
It wasn’t until my mid-twenties that the still-unnamed illness overtook my life. The symptoms that I had coped with for so long bloomed into paralyzing nausea, panic attacks, numb hands and tongue, memory loss, sweats, chills, shakes, and an inexplicable inability to stand up in the morning. I found my way to a Lyme specialist who told me that my blood work was perfect, save for one test. You guessed it, I had Lyme disease. Why hadn’t I known earlier?
Lyme, an infection transmitted by ticks, is complicated and elusive, and even with the recent emergence of celebrities who are helping to garner attention to it, the mainstream health-care community is lagging. Considering there are an estimated 300,000 new cases every year in the U.S., it's likely that many of us will encounter Lyme either personally or through someone we know. But with the right information—which I unfortunately didn’t have—even stealthy cases of Lyme disease can be diagnosed, treated, and overcome.
Below find 7 realities of Lyme disease I wish knew in the 2 decades before my diagnosis
1. Not everyone gets a bull’s-eye rash
Red, round, and rarer than you might think, the bull’s-eye rash that grows around a tick bite is a telltale sign of Lyme disease. But I never had one, and neither do most who are infected. According to the International Lyme and Associated Diseases Society, less than 20 percent of erythema migrans (Lyme-associated rash) take on a bulls-eye shape, and only 30 percent of patients recall having ever having found a tick bite. In fact, some people infected with Lyme may have few, if any, symptoms at the outset.
“If the [Lyme] microbe enters the body and the immune system knows it well, it may not cause as much of a reaction,” says Bill Rawls, MD, author of Unlocking Lyme who treated his own case of the disease with herbal interventions and lifestyle shifts. “A lot of microbes just end up being part of us, and the immune system continues to suppress them.” Because a healthy immune system that’s familiar with Lyme microbes can suppress them, many don’t get a bull’s-eye rash or acute symptoms at first. This contributes to why many people don’t know that they have Lyme until it has been in their systems for a long time.
2. You can take a blood test but you can’t always trust it
Effective Lyme disease tests are still in the early stages of development. According to lymedisease.org, a leading Lyme research organization, 20 to 30 percent of patients have shown false negatives from the most commonly used blood test. To this point, looking at symptom history in conjunction with blood-test results (rather than taking them at face value) is key for assessment.
3. There are many kinds of treatment for Lyme
The most common treatments fall into two categories: pharmaceutical (like intravenous antibiotics) and herbal (like bee venom). But before getting into those, it can be helpful to determine whether your infection is acute (recent) or chronic (long-term).
“If someone is acutely ill after a tick bite, they should be treated with antibiotics, most commonly Doxycycline, no matter what tests may show,” Dr. Rawls says. “There are many more microbe possibilities than there are available tests, so a negative test should not exclude antibiotic treatment.”
But in my experience, having never found a tick bite and then developing severe symptoms later on, it was critical for me to find a Lyme-literate medical doctor (AKA, an LLMD). Of the pediatricians, GPs, eye doctors, and gastroenterologists I’ve seen, zero interpreted my cluster of chronic symptoms as a possible indication of Lyme disease. It was an LLMD who finally diagnosed and treated me. (If you're seeking treatment, two reputable places to find an LLMD are lymedisease.org and the International Lyme and Associated Disease Society.)
To give an idea of what a pharmaceutical approach to chronic Lyme can look like, here’s the treatment I received through my LLMD. For about 14 months, I took a combination of oral antibiotics, antimalarials, and antifungals. Every 3 to 6 months, I rotated or added different medications as a means to suppress and kill the offending pathogens. But after so many months, I could feel the meds killing a lot more than just Lyme microbes, so it was time to explore some herbal-treatment options.
Different doctors have different takes on their preferred methods for treatment, but Dr. Rawls is staunchly in camp herbal. “Herbal therapy with antimicrobial herbs is proving to be the best solution, because herbs suppress a wide range of stealth microbes, along with restoring normal immune system functions,” he says. Herbs have been instrumental for building up my immune system and giving me back my life, but I also did find pharmaceuticals to be helpful.
No matter the treatment, internal pathogens being killed on a mass scale makes any body sick with inflammation and toxic material. Therapies like acupuncture, massage, psychotherapy, saunas, Epsom salt baths, as well as lifestyle changes for diet, sleep, and work have supported my ability to tolerate the treatments.
4. Chronic Lyme is an immune-system issue
A friend of mine who used to suffer from chronic Lyme got really sick with Lyme disease right at the moment when everything else in their life was falling apart. It happened to me the same way. While I had been consistently, even if functionally, ill for many years, it only took a couple of months one summer for my Lyme symptoms to get out of control. My grandmother passed away, my mom got sick, I was fired from a job, and I was financially supporting myself and my boyfriend in New York City. Why does Lyme love to show up right when all the shit is hitting the fan at once?
It’s not a coincidence. My immune system had been strong enough until that point to keep the infection mostly at bay, but when I was confronted with financial pressures, relationship strife, city chemicals, and grief, it was too much for my body to handle. “It is a state of chronic immune dysfunction, in which the immune system can no longer contain opportunistic pathogens in the body,” Dr. Rawls says of this process. “People who relate to chronic Lyme disease typically don't remember a tick bite or didn't get sick at the time of the bite. Instead, they become chronically ill after a perfect storm of stress factors come together to chronically disrupt immune system functions.”
In other words, when my immune system got overwhelmed, it didn’t just let the Lyme microbes run free; it could no longer suppress the other pathogens previously encountered and contained.
5. Lyme brings friends
“It’s not uncommon for people to get multiple infections from a tick bite,” says Dr. Rawls, referring to co-infections. In addition to pathogens picked up in day-to-day life that stay suppressed in our immune system, Lyme can bring along some other microscopic characters. Ticks can carry multiple infectious microbes in addition to Lyme, including babesia, bartonella, Ehrlichia, rickettsia, and more.
Each of these microbes has its own set of symptoms and complexities, but many respond to the same drugs and herbs used to treat Lyme—an often much more complicated and layered issue than a single-microbe illness.
6. Getting well is better than getting cured
Everyone with a severe illness hopes to be cured. As soon as I learned about the Lyme organisms inside of me that were making me sick, I devoted all my energy to eliminating them. I swallowed my medications meticulously, stopped eating all sugar and carbs (which feed the Lyme), and still, somewhere along the way, my resolve faltered and my goals shifted. I felt so ill from the Lyme and medication that I stopped caring whether the illness would be part of me forever and instead focused on feeling better.
I felt so ill from the Lyme and medication that I stopped caring whether the illness would be part of me forever and instead focused on feeling better.
Debate continues in the Lyme community about whether chronic Lyme is curable (meaning all Lyme microbes gone from the body forever). I don’t have the expertise or experience to say for sure, but certainly find it more helpful to focus on reducing my symptoms and increasing my energy than becoming free of Lyme microbes for the rest of my life.
Dr. Rawls also considers quality of life to be critical in his treatment. He asks, “How do we approach a level of life that we are symptom-free, and how long can we continue that? Is there such a thing as having a long life, but a long life that is symptom-free and drug-free, or minimal drug-use?” He addresses these goal-oriented questions by focusing on five factors that affect the body: food, environmental toxins, chronic emotional stress, physical factors, and then the microbes. “The restorative foundation is diet, stress modification, getting enough movement to generate endorphins, and restoring immune system function,” he says. Lifestyle changes coupled with treatment allows many chronic Lyme patients to suppress and reduce their Lyme microbes while strengthening their immune system.
I’m not there yet, but shifting my goal from “being cured” to “feeling well, able-bodied, and symptom-free” has given me perspective and a definable goal that I can follow every day.
7. Educating and advocating for yourself is the best thing you can do
It shouldn’t have taken 20 years to find a diagnosis and treatment for my Lyme disease. Testing failures and the wrong doctors didn’t help, but the worst thing I did was not trust or believe myself. I wish I had observed my symptoms instead of ignoring them. I wish my pediatrician had listened to me. And when he didn’t, I wish I had told another doctor. After speaking with patients all over the country and the world over social media, I know that unfortunately, “it’s too complicated to treat” or “it doesn’t last more than six weeks” are common refrains regarding Lyme disease. The best thing patients can do is inform themselves.
Here's the story of a Navy vet whose two brain injuries took 13 years to diagnose. And this study points to why female pain has been so grossly overlooked.
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