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lyme battle_unite blog_jennifer crystal

A Call to Unite, Not Divide

by Jennifer Crystal

We are all in the Lyme battle together. Let’s be united, not divided.


In today’s divided times, we see a lot of hate on the internet. Politics have become more polarized than ever, with the right blaming the left and the left blaming the right—for what, they sometimes don’t even know. People with different political opinions shout each other down on social media. They spew invective, often at people they’ve never met. Perhaps the anonymity makes such crude behavior easier, since the perpetrators pay no social price. Even those on the same side of an argument sometimes get so frustrated that they turn on each other, using online forums as a means to express their own anger rather than engage in productive conversation.

I’ve seen the same divisiveness in the Lyme world, and not just between the two camps of the Lyme Wars. Chronic Lyme patients who fall on the same side of the IDSA/ILADS divide argue amongst themselves about treatment, testing, and whose symptoms are worse and why. I’ve seen responses to my blog posts where the person makes the same argument I’ve already made and wonders why I didn’t make it. This tells me they haven’t really read my article, reminding me of recent political “debates” where someone buys a headline hook, line and sinker without checking the facts. You can probably think of a particularly bad example without my prompting. They’re legion.

Other readers say nothing relevant to article subjects; they are simply on a rant about another related topic. If the person had asked me about that topic or read some of my other articles, they would have found that I have argued the same point in another blog post. In other words, they’d discover we’re on the same team.

I understand the emotions that feed these types of comments. Pain and frustration make all of us angry. This is especially true for Lyme patients who aren’t feeling particularly well and experience what we might call Lyme rage. That is, having a short fuse because you’re exhausted and your body is overloaded with bacteria and medicine. I’ve struggled with it myself and still do when I am having a flare-up. Fear, stress, and fatigue brings out the worst in all of us, whether we are healthy or ill. Having Lyme, especially with neurological symptoms like confusion and brain fog, only exacerbates the problem.

And the internet is such an easy place to unload with a knee-jerk reaction. We can see a headline, an article, or a comment that triggers us, and immediately we respond without taking the time to think, read, or consider the human being on the receiving end of what we say. Modern technology connects us in so many ways, but it really divides us, too, because it allows a computer screen to act as an alternative to real human interaction.

Online, many comments lose nuance and often get misconstrued. I’ve made jokes that have fallen flat in a text. I’ve said something sarcastically that the recipient has taken literally. I’ve sent emails where my intent has been misunderstood, and vice-versa. We all do this. Fast-paced, online communication is tricky, and we all have our personal stories of typed communications gone awry.

We must slow down. To take time to read the complete article before responding to it. For Lyme patients, I know this isn’t always easy or possible, but we can still take a minute to think about how we respond to someone. Generally, I believe, we have the common goal to unite, not divide. To build each other up, not put each other down.

Even when we disagree, how can we do it in a way that’s productive and keeps the common solution we seek in mind? In the “Writing the Op-Ed” course, which I teach, my students and I  talk about concession and refutation. A good op-ed doesn’t preach or rant, but politely considers the other side and refutes it. Using “I” statements, an author might say,“I can see how some might feel that vaccines are harmful because of stories they’ve read online, but we also must consider the facts that are presented in medical journals. The idea is to say, “Yes, but” or “Yes, and” instead of completely refuting someone else’s stance.

Let’s remember that we are all in the Lyme battle together. We’re either sick or know someone who’s sick and we want better health for all. We want better diagnostics. We want  better treatments. We want to raise public awareness. To achieve those goals, we must work together and support each other!

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].


ILADS: Madrid

9th European Conference – Madrid, Spain

Join us in Madrid, Spain, for our 9th European Conference on Saturday, June 8, and Sunday, June 9, 2019. The conference will take place at the Hotel VP El Madrono, located in the city’s Salamanca district. Carmen Navarro, MD, is the Program Chair.

The conference theme is Lyme Disease: Environmental Disease of the 21 Century. The conference is for medical professionals who have a particular interest in learning more about the appropriate diagnosis and treatment of tick-borne diseases.




Join leading Lyme physicians and researchers as they discuss highlights from the recent International Lyme and Associated Diseases (ILADS) – Boston Conference. Includes Q&A.

Date: January 31, 2018
Time: 5pm ET
Registration: CLICK HERE


Lyme disease is an illness caused by the bacteria Borrelia burgdorferi, a complex microbe known as a spirochete. Lyme disease is a multi-systemic illness, if left untreated it can become a severely debilitating illness affecting the central nervous system, joints, and multiple organs, including the heart and brain. It presents in multiple-stages from: acute (early stage) to chronic (late stage or persisting) illness.

The CDC estimates over 300,000 people in the United States are diagnosed with Lyme disease each year. It is one of the fastest growing infectious diseases in the U.S. and Western Europe.This year, the International Lyme and Associated Diseases (ILADS) 18th Annual Scientific Conference presented a theme, Tick-Borne Diseases: A Global Perspective. Leading physicians, scientists, and others with expertise in tick-borne diseases shared important research updates, and other evidence-based clinical data with their peers. Join us to hear a summary of key data and information presented at the ILADS 18th Annual Scientific Conference.

politics lyme disease

Partisan Politics in Lyme Disease

by Jennifer Crystal

This past year we’ve seen our country’s politics become sharply divided, even though our politicians are supposed to be working together for the greater good of the American people. Watching the news, I’m reminded of the partisan politics of Lyme disease: the doctors occupy two divergent camps, the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS).


Why would there even be two camps of diagnosing and treating Lyme? We don’t hear about that in cancer, or lupus, or rheumatoid arthritis. Sure, doctors may have different opinions on how best to treat these ailments, but there isn’t an overarching political divide that makes it difficult for patients to get an accurate diagnosis or proper treatment in the first place. Why is that the case with Lyme? How can a disease be so controversial?

Friends ask me this all the time. Until they go through it themselves—until they find a tick bite and have to talk about testing and treatment options with their doctors—it’s hard for them to understand the rift, and it’s equally difficult for me to explain it without giving what feels like a lecture. But it’s important for everyone to understand the basics of Lyme politics, so that when they do get a bite or symptoms, they can make educated decisions. As an informed constituent, I will try to provide a layman’s primer on the two “political parties” of Lyme.

IDSA’s guidelines for treating Lyme disease state that most cases can be cleared up with three weeks of antibiotics, and they do not recommend treatment beyond that point or recognize the existence of chronic Lyme disease, which I have long suffered from.

The problem is that not all patients are diagnosed correctly and immediately. Because Lyme tests only look for antibodies against the infection rather than the actual bacteria, they miss 30-50% of positive cases. Adding to the difficulty of diagnosis are the disease’s nebulous symptoms and their staggered manifestation throughout the human body over months or even years.

Unfortunately, doctors following IDSA guidelines rely heavily on these faulty tests. They also look for the “tell-tale” bull’s-eye rash, called Erythema Migrans or EM. However, this rash appears in less than 50% of all Lyme cases, and can also present in different forms and at different periods of the infection. My initial rash was a blotchy series of red dots on my inner forearm. Only years later did bull’s-eye rashes appear on both of my elbows.

Had I been accurately diagnosed with Lyme when I first discovered that initial rash, three weeks of antibiotics would likely have cleared up the infection.

But I wasn’t diagnosed for another eight years. Left untreated, the Lyme bacteria in my body replicated and spread, crossing into my central nervous system. By the time I was diagnosed, three weeks of antibiotics wouldn’t have touched such a severe, multi-systemic infection. Think of it like cancer: a small, Stage I cyst would require simpler treatment than metastasized Stage IV cancer. My infections were late-stage and therefore required more prolonged treatment.

Luckily, I found a Lyme Literate Medical Doctor (LLMD) who was able to treat me effectively. ILADS trains doctors in the complex diagnosis and treatment of Lyme and other tick-borne diseases. ILADS doctors understand the inaccuracy of testing, and therefore they rely on their clinical expertise to make a diagnosis, just as they would for a sinus infection or a cold. They recognize that Lyme often goes undiagnosed and untreated, and that late-stage Lyme requires longer treatment than the stringent IDSA guidelines allow. ILADS has written its own set of guidelines.

Both sets of guidelines include evidence-based research. Why, then, would there be such a discrepancy? To answer that, you have to look at who wrote the guidelines, and their conflicts of interests. As explained in the documentary Under Our Skin, some of the panelists who wrote the IDSA guidelines had connections to insurance companies and pharmaceutical corporations. For financial reasons, they had a vested interest in denying the existence of chronic Lyme disease, and arguing against the efficacy of long-term treatment.

Seeing my illness be denied for reasons that have nothing to do with my health is like watching politicians deny the science of climate change.

In today’s world, we have to dig through “alternative facts” and “fake news.” So what’s real and what’s fake, what’s right and what’s wrong in the Lyme divide? Only you and your doctor can make the best decision for you, but I can tell you my own facts:

Fact #1: If I had been tested for Lyme disease at the time of my tick bite, it might have been negative, even though I later had a CDC-positive test.

Fact #2: Had I seen an ILADS doctor first, he or she could have made a clinical diagnosis despite nebulous test results, and my co-infections could have been taken care of immediately. The next 20 years of my life would have been completely different: I would have had my health.

Fact #3: Had I seen an IDSA doctor at the time of my accurate diagnosis, eight years after the initial tick bite, I would have been given only three weeks of antibiotics, and I would still be very sick. My symptoms would have gotten worse. Today, 12 years later, I would still be bedridden, instead of in remission and living my life.

Fact #4: The treatment my ILADS doctor prescribed allowed me to get well enough to teach, write, ski and paddle board.

Fact #5: My ILADS doctor is well-versed in co-infections, and treated mine effectively. Had I seen an IDSA doctor, my co-infections in all likelihood would have been ignored.

Fact #6: My ILADS-based treatment for chronic Lyme has not been dangerous, as IDSA purports it to be. Long term antibiotics have had no adverse effects, and I have not built up immunity to the drugs. When I get an acute infection, I still take a normal dose of different antibiotics, and react to them just the same as anyone else would. My doctor is careful and cautious, checking my blood once a month to make sure my medications aren’t harming me in any way.

My hope for Lyme is the same as my hope for our country: that eventually we can have bipartisan support, in this case for the common cause of healing people who are very sick. Until then, it’s important for patients, doctors, and those who are one tick bite away from Lyme to arm themselves with the necessary information to make educated decisions, so they will not suffer as I have.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]