8 Things I Wish I'd Known About Chronic Lyme Disease
About a year ago, a sense of unwellness began to creep through my body. I constantly had to pee, couldn't sleep through the night, and could not stop cracking my neck. I figured it was just stress, but as the overactive bladder escalated to burning pain, I suspected something more physical. After several doctors told me it was anxiety or nothing was wrong, I finally found a urogynecologist to treat me for interstitial cystitis. I was not improving as much as I hoped, so I went to a new urologist, who suspected a chronic UTI and put me on antibiotics — to which I had an unbelievably strange reaction. Not only did my bladder symptoms worsen, but new ones popped up — and did not leave.
Over the course of the following weeks, I developed severe insomnia, involuntary jerks of my limbs whenever I tried to sleep, muscle twitches all over my body, tingling in my extremities, pain on the bottoms of my feet, heart palpitations upon standing or climbing stairs, tremors in my hands, and a physical, jittery anxiety I'd never felt before. I stayed with my parents to try to figure out my mysterious illness, but nobody could give me a satisfying answer. Doctors attributed many of my symptoms to anxiety, and when they did take them seriously, they prescribed medication to cover them up without getting to the root.
My parents grew frustrated that I wouldn't accept the "anxiety" theory (in their defense, anxiety was among my symptoms) and go on psychiatric medication, leading to frequent fights. After a big blow-out with my mom, I realized I was the only one who could help myself. I left home and moved into an Airbnb. During this whole saga, a friend of mine who happens to be a psychic called. "It's something like Lyme Disease," she said before I even described my symptoms. I had no memory of a tick bite, so I chuckled and shrugged it off — until, two weeks later, the 17th doctor I'd seen in a year had me fill out the Horowitz Lyme-MSIDS Questionnaire.
On that sheet of paper, I saw not only the symptoms I'd recently been dealing with but also some that I'd mysteriously had for years. My brain fog, missing periods, forgetfulness, rage attacks, bladder problems, and neurological issues suddenly all fit together. I scored very high on the questionnaire, prompting the doctor to order several tests. Soon, I found out I was carrying DNA and antibodies for not only Borrelia Burgdorferi, the bacteria known as Lyme, but also several Lyme co-infections including Bartonella, Babesia, and Mycoplasma. What had happened when I took antibiotics, the doctor explained, was a Herxheimer reaction, where Lyme bacteria get released into the bloodstream, making you temporarily worse. I'd likely been harboring latent Lyme for a while, and it found the perfect opportunity to come out.
Some people debate whether chronic Lyme Disease even exists. But Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, sees it every day. "The evidence I see most frequently are the anecdotes of the people who have been treated for Lyme and remain ill and after long treatment become well again," she tells Bustle. "There is plenty of published research in the literature that shows Lyme persisting after treatment."
Mary-Beth Charno, APRN-C, a nurse practitioner who specializes in treating Lyme, sees chronic cases frequently as well. "Even if there remains no active infection at the time of testing — and this too is in dispute due to the insensitivity of our testing — this illness can cause pervasive multi-system breakdown, which can affect people for years," she tells Bustle.
When it comes to our understanding of chronic Lyme, we're still in the dark ages. Here is what I now know about it that I wish I'd known before — and that you might benefit from knowing, too.
1It Rarely Travels Alone
Lyme often coexists with what Lyme expert Richard Horowitz, MD calls "Multiple Systemic Infectious Disease Syndrome." On top of the Lyme bacteria Borrelia Burgdorferi, most people with Lyme also have a number of tick-borne infections known as Lyme co-infections. The most well-known are Bartonella and Babesia, but Lyme also frequently comes along with Ehrlichia, Mycoplasma, and Rocky Mountain Spotted Fever.
Therefore, killing the Borrelia alone often does not solve the problem. Treating Lyme requires a more global approach that not only kills co-infections but also strengthens the gut and immune system so that all the infections can be kept at bay. "Most people who remain ill with tick-borne illness are multiply infected," says Charno. "Detox and fine-tuning the immune system are keys to improving health."
2It Looks Different For Everyone
I didn't recognize Lyme in myself for so long because I didn't have the typical rash, joint pain, or fever. But there's no one way Lyme looks, especially in the chronic stages. Two people with Lyme can have wildly different symptoms. Aside from the better-known ones, just a few of its diverse array of symptoms include pelvic pain, irritable bowels, poor concentration and memory, sleep disturbance, and respiratory issues, but there are also many others. You can fill out the Horowitz Lyme-MSIDS Questionnaire and/or Lymedisease.org's symptom checklist to evaluate whether you might have Lyme.
One reason Lyme presents in so many ways is that some of the symptoms are not from the Lyme itself but from other infections that emerge when the immune system malfunctions, says Reihman. For example, latent viruses may activate, causing chronic fatigue. Or, Lyme may spread biofilms to the bladder, causing chronic UTIs. Plus, co-infections each carry their own set of symptoms. Another reason is that Lyme has a whopping 132 lipoproteins — particles that create inflammation and help Lyme evade the immune system, says Charno. These allow Lyme to wreak havoc on every organ in the body.
3It's Poorly Understood
You can't count on most doctors to identify chronic Lyme. Knowledge of this condition is just starting to come out, and many doctors miss it (I went to 17 before getting the correct diagnosis!).
"I often see people who have been to multiple doctors," says Reihman. "Most of the time, these people have been told they don't have Lyme because they have negative tests or have already been treated. Many have been made to feel like they're crazy or delusional or it's all in their head. Doctors aren't bad people and they're not trying to create more suffering, but we were trained wrong."
Charno sees similar cases. "Tick illness, mold illness, environmental medicine are specialty fields requiring a lot of training," she says. "What upsets me are the naysayer clinicians who will discount the possibility that their patients’ symptoms could be caused by a condition foreign to them. Or to suggest that their symptoms may be caused by anxiety. Or offer them a basket label such as chronic fatigue and say 'there’s nothing we can do for that.' Rather, we have to keep asking, 'Have I done all I can for this patient?' This will allow for the inquiring mind to begin to consider options previously discounted. And isn’t that the foundation of science and intellectual humility?"
Fortunately, there are databases of Lyme-literate doctors who can properly diagnose and treat Lyme patients. If you have symptoms of Lyme, don't let doctors tell you it's nothing or it's in your head. Of course, it's possible that you're suffering from something other than Lyme, but you obviously have something, and a Lyme-literate doctor can help you figure out if it's Lyme.
4It's Difficult To Test For
The standard tests for Lyme, the Western Blot and ELISA blood tests, are very prone to false negatives, says Reihman. One reason for this is that Lyme hides from the immune system, so your body doesn't always produce the antibodies tested for. In addition, it doesn't check for every species of bacteria that causes Lyme. There are other tests for Lyme that are more sensitive, like those by iGeneX, DNA Connexions, and Armin Labs, but no test is always accurate.
That's why Reihman makes a "clinical diagnosis" — that is, she will diagnose someone with Lyme if their symptoms match it and cannot be explained by anything else. This is what the CDC recommends and what Charno does as well. "With a good history, exposure history, symptom cluster picture, and physical exam, a diagnosis can be made," she says. "The lab testing can support that diagnosis, but a negative test should not overshadow the original suspicion." In other words, positive tests are helpful, but you can have Lyme without them.
One of the reasons so many people with Lyme get told their symptoms are in their heads is that their tests appear negative. But just because you test negative for Lyme doesn't mean you don't have it, so make sure your doctor is looking at the whole picture and taking your symptoms into account.
5It Mimics LOTS Of Other Conditions
My experience of being diagnosed with Interstitial Cystitis before Lyme is very common. Lyme is known as the "great imitator" because it resembles so many other conditions. People with chronic Lyme often first get diagnosed with other illnesses such as Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, Graves' Disease, and Hashimoto's Thyroiditis.
Lyme can also mimic mental health conditions like anxiety, with symptoms like restlessness and heart palpitations, which can unfortunately fuel perceptions that a patient's condition is psychological when it's not. If you've been diagnosed with a condition that Lyme tends to mimic, it may be worth exploring Lyme as a possibility, says Reihman.
6You May Not Remember Getting It
Lyme is typically (though not always) transmitted by tick bites, but not everyone with Lyme even remembers getting bitten by a tick. Lymedisease.org states that only nine percent of patients get the bulls-eye rash associated with the disease (the CDC estimates that 70-80 percent get some sort of rash), only 20-35 percent remember a tick bite, since the bites are small and painless and the ticks themselves are tiny, and only half of chronic Lyme patients recall early symptoms.
Cases like mine, where people don't even notice contracting Lyme and then become symptomatic years down the road when something triggers it, are not uncommon either. "People who maybe have a rough year at work or in a relationship and their house flooded and got moldy and they didn't sleep and suddenly they have a Lyme diagnosis — it's not because they also got bitten by a tick that year," says Reihman. "It's because they went camping as a child and already had tick bites, and it chose to come out because their immune system was down." So, just because you don't remember a tick bite doesn't mean you don't have Lyme.
7It Gets Worse Before It Gets Better
People undergoing treatment for Lyme should know that if they experience a flareup, that's not necessarily a bad sign. Many experience Herxheimer reactions aka Herxing, where they temporarily get worse because parts of the bacteria are released into the bloodstream, causing inflammation, says Reihman. In fact, one sign Reihman looks out for in diagnosing Lyme is that the patient got worse after taking antibiotics for another reason, like I did.
A Herx "doesn't mean you should stop treatment," says Reihman. "It does mean you should have a better detoxification strategy." In fact, Herxing is largely avoidable if you "do less killing more detox work," she says. "Lyme is not a race, and slow and steady wins this race."
8It Requires You To Treat More Than Just The Lyme
"In many cases, these pathogens themselves are not the root cause, but rather the opportunists who take advantage of a weakened host," Reihman writes in Life After Lyme. After all, many people carrying the bacteria are healthy. Those with Lyme usually also have compromised immune systems that either aren't responding or are hyper-responsive. Therefore, treating Lyme isn't just about getting rid of bacteria. It's about strengthening your body and mind to become more resilient.
Some key components to recovery include an anti-inflammatory, allergen-free diet, adequate rest, and removal from environmental toxins like mold, Reihman tells Bustle. But it also requires breaking free from toxic relationships, situations, and thoughts that put stress on an already overburdened body.
The process of recovering from Lyme "flexes the muscles of persistence, creativity, detachment, and faith," Reihman writes. "It encourages personal growth and a playful spirit. Taken together, all of these traits will help you become even more resilient than before getting in the ring with Lyme. Moreover, it will allow you to become the ultimate steward of your Healing Project, and the master of your own recovery. Here is the good news: Lyme never calls on us to become a worse version of ourselves."