Tag Archives: living with lyme disease

Calculating Risks

by Jennifer Crystal

When living with Lyme disease and making decisions in regards to your health, it’s important to weigh the dangers, benefits, and consequences. It’s called taking calculated risks.

When I got my PICC line (Peripherally Inserted Central Catheter) inserted for intravenous antibiotics, the nurse who did the procedure offered a number of precautions. Because the line ran to my heart, I absolutely could not get it wet; one drop of water could have fatal consequences. So, I wore a special sleeve when doing dishes, did not swim, and had someone help me wash my hair. I also had to be very careful not to catch the line on anything. After infusing my antibiotics, I wrapped the cord around my arm and covered it with a mesh sleeve. In public, I covered that sleeve with an ace bandage. To keep the PICC line clean and avoid clots, I flushed it with saline and heparin. The nurse came to clean the dressing once a week. These precautions were non-negotiable because the risks they protected me from were severe.

Other risks were not so severe, and the nurse encouraged me to weigh dangers and benefits when considering behavioral choices. For example, to avoid putting strain on the line, I wasnt supposed to lift anything heavy. But if someone with a baby comes to visit you,” he said, by all means, hold the baby because thats more important for your mental and emotional health.”

This conversation has stuck with me in my years of convalescence from Lyme disease, two other tick-borne infections—babesia and Ehrlichia—and chronic Epstein-Barr virus. In the fifteen years since I had a PICC line, Ive achieved remission twice, relapsed once, and have gradually gotten more and more capable of living a full life. Throughout this time, Ive had to make many risk-benefit analyses about treatment, activities, and my own behaviors.

Ive learned that some risks are worth taking, even when I know there will be consequences. For example, at this stage of my recovery, its okay for me to occasionally splurge on gluten-free brownies, even if they might rile up some symptoms. On the other hand, some risks are not worth taking, because the consequences are too severe. For instance, while its good to get back to the activities I love,  pushing my body too hard physically will just land me back in bed.

Sometimes, no matter how carefully I calculate my moves, I cant control external factors that affect my health. Living in a big city and riding public transportation, I cant always ward off fast-spreading viruses, no matter how well I sanitize my belongings and wash my hands. In 2013 I got norovirus, and in March 2020, I got COVID-19. Ive learned to make the best choices possible with the information I have. For example, now, while we are still in the throes of the global pandemic, I avoid public transportation entirely.

One of the biggest risk-benefit analyses tick-borne illness patients have to make is about how much time to spend outdoors. After suffering from Lyme and/or co-infections, its natural to fear re-infection. But we cant hide inside. Instead, we have to take necessary precautions, like staying out of wooded areas and on designated paths, wearing repellent, showering after spending time outdoors and checking ourselves and our animals for ticks. I am constantly calculating the risks and benefits of each outdoor activity I undertake. Is it worth it to me to play in mowed grass with my friends kids? Yes, if Im wearing long pants, closed-toed shoes, and repellent. Is it worth it to me to forge through the woods with those same kids? Well, no.

As I weigh dangers, benefits, and consequences, I also think about alternative solutions. I might say to the kids, I dont want to play in the woods, but how about we plan a day of swimming?” If friends suggest going to a loud, crowded bar (in pre-pandemic times), I might say, Im going to skip that part, but would love to have dinner with you beforehand.”

Everyone has to make calculated decisions based on their own boundaries and desires. A person with diabetes has to calculate the risks of eating a slice of birthday cake. A person in a wheelchair has to assess accessibility when planning an outing. And these days, everyone has to make calculated risks. We cant stay inside forever hiding from COVID-19, but we also have to make smart choices about when we go out, who we allow into our bubbles, and how safe it is to interact with them.

With every move we make, theres a risk-benefit analysis, though we might not always be aware of it. We cant always get it right, but we can learn from our experiences and make different choices based on them. We should follow scientific guidelines and we should remember that its all about moderation, pacing, and balance.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

The Importance of Being Vigilant

by Jennifer Crystal

From medication issues to prescription errors and medical bills, these areas require heightened vigilance when dealing with tick-borne illness

In a recent blog post “Don’t Forget It’s Tick Season, Too”, I discussed the importance of being vigilant about checking for ticks while we are outside practicing social distancing this spring. We are in prime tick season, and we need to keep up our guard through the warmer months and into the fall.

Most people who have experienced tick-borne illness are fastidious about protection and prevention and are mindful of rashes and flu-like symptoms. But what some don’t realize is that vigilance needs to extend beyond checking for ticks and monitoring symptoms. Once diagnosed with tick-borne illness, there are other areas that require heightened vigilance. In this post, I’ll highlight some of those areas, and provide lessons learned from my own experience.

Taking Medication

Sick and exhausted, Lyme patients often spend the better part of the day in bed. Therefore, they might sleep through times when they need to take medication, or they may forget to do so because of cognitive symptoms, also known as Lyme brain. In order for antibiotics and other medications to work effectively, it’s critical to follow dosing guidelines. Ask your doctor what time of day you should take each medication, and if there are any other guidelines for taking them. For example, certain medications shouldn’t be taken with vitamins; some of my morning medications are like this, so I take my multi-vitamin at lunch.

Medications that are taken several times a day often need to be spaced out at certain intervals, say, breakfast and dinner. Some, though, shouldn’t be taken with food. Others must be taken with food, and still, others need to be taken with specific types of food (for example, the babesia medication Mepron is best absorbed when taken with fatty foods like peanut butter or mayonnaise).

Managing a medication schedule can feel like a full-time job. I recommend writing out a schedule with your doctor, and bringing a caregiver with you to the appointment, so they can also understand the schedule. You might then keep the schedule posted by your pillbox (big weekly boxes with separate compartments for morning, lunch, dinner, and bedtime are especially useful; the day and time labels also ensure you don’t take a dose more than once). You might also consider setting alarms on your phone to remind you when to take your medication.

Medication Side Effects

Prescriptions often come with lengthy pamphlets outlining lists of possible side effects. While you don’t want to be scared off by these lists, which sometimes include a rare reaction that only happened to one patient, it’s important to learn what the most common side effects of your medications are. Ask your doctor or pharmacist what you should be on the lookout for, and how each of your medications might react with another. When any provider prescribes a new medication, make sure he or she is aware of everything you’re currently taking, including supplements and homeopathic treatments, so they can check potential drug interactions.

It’s also important to differentiate between side effects, Lyme symptoms, and allergic reactions. If you experience headaches after starting a medication, you might wonder, is that a typical side effect, or a flare-up of a Lyme symptom? If you experience flu-like symptoms, is that a Herxheimer reaction or an allergic reaction? I once started a new medication and immediately developed a low-grade fever and increased malaise. I figured it was just my Lyme symptoms flaring and stayed in bed for a few days. When I saw my primary care physician, though, she determined that I was having an allergic reaction typical for this specific medication.

I recommend recording all of your symptoms, especially when you start a new medication, and checking with your doctor immediately if you notice anything unusual. You may think it’s just a Lyme flare, but then again it might not be.

Prescription Errors

We want to be able to trust our pharmacists, and usually, we can. However, they are humans who can make mistakes, too, especially when they are overworked and understaffed. A recent article in the New York Times entitled How Chaos at Chain Pharmacies Is Putting Patients at Riskdetails how the push to do more with less has made medication errors more likely” at local pharmacies. The article gives examples of patients who were given the wrong medication, some with fatal results.

I know first-hand how scary these kinds of errors can be. One day during the height of my convalescence from Lyme, babesia, and ehrlichia, I was filling my weekly pillbox and noticed an oval-shaped pill mixed among one of my round medications. The two types of pills were the same color, but given that one was a different shape, I took it back to the pharmacy. The pharmacist told me that the oval pill was a blood pressure medication that started with the letter L”. It had somehow gotten mixed up in my medication that also started with L”. The pharmacist said he didn’t know how the mix-up had happened, but that I was lucky I noticed because taking that wrong pill could have had dire consequences.

A Lyme patient with brain fog could easily miss such an error. Caregivers can help Lyme patients fill their pills. Get to know each prescription: its shape and size, its color, its dose. Read the labels on prescription bottles, which often give a physical description of the pills, and make sure the medication matches. If there is a mix-up, caregivers can offer to speak with the pharmacist on the patient’s behalf.

Insurance Claims and Medical Bills

Lyme patients are overwhelmed with paperwork: insurance claims, which often need to be filed by the patient, explanations of benefits, provider bills. I still get excited when I receive mail that isn’t medically related since my mailbox is often full of such correspondence. Sorting through this paperwork can be difficult for anyone, and downright impossible for the neurological Lyme patient. The tendency might be to just pay the bill, whatever it is because you’re too tired to dispute it or too confused to understand it.

Again, this is where caregivers can really help. My stepmother has become my insurance aide, helping me sort through and make sense of all my paperwork. Patients need someone who is willing to read through and learn about medical codes, check explanations of benefits against medical bills, and call insurance companies or providers when there is an error. And there often is. Countless times, my insurance has denied coverage of a procedure or medication they should have covered. These companies count on patients not noticing or appealing these errors. Most Lyme patients can’t afford to lose money, nor do they have the energy to fight for appropriate coverage. Caregivers or friends who want to help but don’t know how, here is your chance!

More Blogs:
Top Ten Myths About Lyme Disease
Lyme Brain: The Science and the Experience
Lobbying for Lyme Disease on Capitol Hill

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

Lyme Disease Physician Answers Questions About COVID-19

Patient-Doctor Q&A: Lyme Disease and COVID-19

Interview by Alex Moresco

I have spent the last few weeks like many of you inundated and overwhelmed by the sheer enormity of the news coverage about COVID-19. Separating fact from fiction is growing increasingly difficult as panic permeates our community. Typically trustworthy media sources are misreporting the COVID-19 pandemic. As someone living with Lyme disease, POTS and SAD, I sought out factual, science-based knowledge on COVID-19. Toward that end, I recently sat down with Dr. Casey Kelley, an Integrative and Functional Medicine specialist (and LLMD), and the founder of Case Integrative Health, who has been reporting live from Chicago as an Illinois COVID-19 expert on Fox 32, Chicago.

Dr. Casey KelleyDr. Kelley graduated from The Ohio State University College of Medicine and completed her residency in Family Medicine at St. Joseph Hospital in Chicago.  She is a ten-year member of the Institute of Functional Medicine (IFM), a Director on the board of The International Lyme and Associated Disease Society (ILADS), and is a Founding Member of the Academy of Integrative Health and Medicine (AIHM).  Dr. Kelley is also on the faculty at the Feinberg School of Medicine at Northwestern University.

Dr. Kelley answered the following questions submitted by members of the tick-borne disease community.

Q:  First of all, what is COVID-19, and what are the early symptoms we should look out for?

A:  COVID-19 is a new type of coronavirus that is causing mild to severe symptoms in our population. Most people will have a mild form of the illness while some who have underlying medical conditions, those who are over 60,  smokers and those who are immunocompromised are at a higher risk of developing a more severe form of the illness.

Check in with yourself regularly. The most common symptoms to look out for are a fever of 104 or higher, a dry cough and difficulty breathing. Some people are also noting a loss of smell and taste. Less common symptoms include headache and GI upset. Keep in mind, it is also cold, allergy and flu season—if you start to show COVID-19 symptoms, do not panic!

Q:  How is COVID-19 spread so quickly from person to person? Is this virus airborne?

A: As a doctor that is sitting with patients all day, every day, I am constantly seeing respiratory illness. If you have respiratory symptoms it might not be COVID-19, but all respiratory illness is generally contagious so treat this like any other illness and self-quarantine.

COVID-19 can spread through respiratory droplets produced when an infected person coughs or sneezes. It may be possible that a person can get COVID-19 by touching a surface or object that has the virus on it, and then touching their own mouth, nose, or possibly their eyes. So you are not likely to catch it just from being in the same grocery store with someone who is sick.

Many of my patients have been asking me—does this spread before you show symptoms? Yes, just like with the flu, it is possible to spread the infection before you know you are sick. Just because you feel well doesn’t mean that you cannot transmit the infection.

Q:   As someone with other conditions—like Lyme disease—are there extra steps I should be taking to stay safe from COVID-19?

A: There are certain precautions we can take to stay safe. Remember, do not panic, but be cautious. Avoid contact with people who are presenting COVID-19 symptoms. Stay home and self-quarantine if you feel like you are sick. Avoid public gatherings and practice social distancing, this is how we will keep from spreading the illness faster than our hospital systems can handle. At the most basic level, do not touch your face, do not shake hands, use hand sanitizer with 60% or more alcohol content, and avoid touching things like doorknobs, elevator buttons, and credit card scanners.

Talk to your doctor about ways you can help boost your immune system: supplements, IVs, peptides, etc. One of the most important aspects to treating Lyme disease is boosting the immune system so it can fight off the infection) and protect you from viruses and other illnesses you might come in contact with.

Q:  What should I do if I think that I could have possibly come into contact with someone who has COVID-19?

A: First, assess your symptoms, a persistent fever of 103-104, a dry cough and difficulty breathing could be symptoms of COVID-19. If you feel you are unwell, self isolate and then you should call your doctor to discuss your condition and situation. They can help best determine if you need testing.

Q:  As someone who is chronically ill, and now worried about COVID-19, what are some simple things I can do to reduce my anxiety?

A:  Manage your anxiety and stress (which suppresses your immune system) the best way you can.  Find time to reach out to loved ones, take time for self-care—bubble bath anyone?— gratitude, laughter. These are some of the strongest things you can do to stay safe in this time. Set up a phone call with your therapist if you regularly see one. Try not to consume too much news. Set time limits on how much news you watch day to day, and your anxiety should lessen.

Let’s also touch on the importance of lifestyle and self-care. Get adequate levels of sleep, avoid processed foods, eat foods rich in vitamins and minerals. Exercise if you can and get outside!

Q: With the medical community having to adapt to accommodate the COVID-19 outbreak, what has the greatest challenge been?

A: With COVID-19 sweeping the U.S. our work feels like it has greater purpose— to keep patients safe from the progression of the novel coronavirus, and aid in keeping our hospital systems from becoming overburdened and kept available for the most critical COVID-19 cases. In our efforts, we have moved all of our patients to virtual visits. We have also launched small group visits virtually, so we can aid more patients day to day to support their health and immune function during such a critical time. We are happy to help those who are immune-compromised, at any time.

Q:   If you aren’t considered high risk but do have cold and flu symptoms, what is the best course of action?

A: The best thing you can do is call your doctor and immediately socially isolate yourself. The important thing to remember during this time is that most will recover from COVID-19, but we must protect our immunocompromised friends.

Q:  Generally-  what antiviral and immune support protocols should we be following?

A: Supplemental support is crucial right now and we should all be practicing preventative medicine in the coming weeks. If you want to boost your immune system, I recommend: vitamin A 25,000 IU 1-2x/day (NOT if pregnant or if trying to become pregnant), vitamin D 10,000-15,000 IU daily, vitamin C 3,000-6,000 mg daily (watch for upset stomach as a side effect and if so reduce dose), zinc lozenges, elderberry and anti-viral herbs as directed. As always, this is not meant to be taken as medical advice, so please consult your doctor.

Q:  Is it safe to take walks in the neighborhood while you are working from home and you are considered healthy?

A: Yes, absolutely! Get outside to breathe fresh air! And exercise is necessary for everyone right now, if possible. Please practice social distancing and stay six feet away from others on the sidewalks. But don’t forget to make eye contact and wave hello to people you see.

You can find Dr. Casey Kelley on Instagram and her website.

*If you suspect you may have COVID-19, please call the office of your health care provider.

Related Posts:
Letter from CEO About COVID-19 and GLA Community 
Corona With a Twist of Lyme
Alex Moresco’s Podcast: In The Lymelight

Alex Moresco on StageOpinions expressed by contributors are their own.

As someone who lives with Lyme & other illnesses, Alex Moresco’s mission in life is to help others and better the lives of those living with tick-borne illness. As the co-founder of two separate fundraising events in Chicago, She’s raised over  $350,000 for Global Lyme Alliance.

You can find Alex Moresco on Instagram.

The Leaps of Lyme

by Jennifer Crystal

This year is a leap year”, meaning that every four years we add February 29th to the calendar. This leap year got me thinking about the many leaps that are involved in fighting Lyme disease.

Over 427,000 people are diagnosed each year with Lyme—more than HIV and breast cancer combined—and these patients find themselves forced to take a leap into unfamiliar territory. There, they’ll find many contradictory messages, many different stories of what constitutes a typical case and its treatment , all of which usually comes amid ongoing questions about their own diagnosis.

Being diagnosed with Lyme disease—especially when its not a clear-cut case with a positive blood test or a bulls-eye rash, or a late-stage case complicated by co-infections—requires many leaps of faith. Patients must have faith in their Lyme Literate Medical Doctor (LLMD), often found only after dozens of other doctors have let them down. They need faith in their treatment, which can take time to work. Patients will likely experience Herxheimer reactions, and it can take some trial and error to find the right cocktail of medications for each case of tick-borne disease. So it’s not surprising when patients wonder, “Am I on the right path?” “Do I really have Lyme?” “Am I working with the right doctor?”

I asked these questions, too, many times in my years-long journey from diagnosis to treatment to recovery. I suffered not only from Lyme disease, but from two other tick-borne co-infections—ehrlichia, and babesia—as well as chronic Epstein-Barr virus. When I saw an improvement in my symptoms I felt good about the leap of faith I’d taken in my doctors and my protocol, but when I suffered a Herxheimer reaction—or worse, when I suffered a complete relapse after going off treatment—that faith faltered. I sought second opinions. I tried different medications. I questioned the progress I had made. I questioned myself.

Luckily, my friends and my medical team would step in to remind me of the predictably relapsing nature of my illnesses. They reminded me, too, of how far I had come, of all the ways I’d had confidence in my care until then, of my positive blood work, and of other biomarker tests I’d undergone (like tests for inflammation and a SPECT scan that showed I wasn’t getting enough oxygen to part of my brain) that supported previous clinical observations. They told me to stay the course, and to have hope that I would one day live a healthy life. I took that leap of faith, and I’m so grateful I did. Had I failed to, Im quite certain I’d still be bedridden to this day. Instead, I am enjoying remission that’s allowed me to live a fulfilling life.

Battling tick-borne disease also involves other leaps that are not always so positive. For example, as soon as I felt any improvement in symptoms, I wanted to get right back to my old life and work, exercise, and socialize. Inevitably, doing so too precipitously would cause me to crash. This happened on small and large scales. When I was convalescing at my parents’ home and on intravenous antibiotics, I might feel a surge of energy for a couple days and spend it going meetingfriends, driving myself to appointments, or walking to the end of the block. My doctor said this was a common folly of Lyme patients, wanting to do too much too soon and then paying the price.

This happened on a much larger scale when I first achieved remission and went off antibiotics entirely. I moved out of state and started a new job. These transitions were far too large a leap, and without proper autoimmune defenses, the Lyme bacteria came raging back within a few months. The second time I got to remission, I took much smaller steps, moving only a few minutes away from my parents, volunteering before committing to a rigorous work schedule, and then working only part-time. I learned that Lyme is best fought with large leaps of faith, yes, but with smaller steps of action.

Finally, recovering from tick-borne disease often involves leaps in time. I lost the second half of my twenties to Lyme, and those were years I can never get back. When I finally re-emerged, so to speak, I found myself at a different life stage than my peers. This is the time-warp that tick-borne illnesses can cause, which I discussed in a previous post, and this “lost time” has remained an issue for me to this day, though Ive learned to accept that Im living life at my own pace.

Its another leap of faith—a belief in oneself—to know that one’s inability to meet a typical timeline for life milestones does not mean an inability to meet one’s life goals. In my case, since my previous leaps of faith yielded positive results, Ill take this one, too, as I continue to make small steps forward.

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

peer-to-peer support_kasey passen

Peer-to-Peer Support: A Personal Passion and Mission

GLA launched its Peer-to-Peer Mentor Support program in June 2019. The inspiration for this important program was our friend Kasey Passen.


When Kasey Passen, a Chicago chef and nutrition expert, contacted Global Lyme Alliance’s CEO Scott Santarella with an idea three years ago, she had no idea of the positive impact she would ultimately have for many Lyme disease sufferers.

Kasey, who lost her battle with Lyme disease last year, wanted to raise awareness about the illness and introduce GLA to Chicago. She also spoke about her desire to eventually create for Lyme patients what her friend Jimmy Imerman had created with Imerman Angels, his one-on-one support nonprofit for those dealing with cancer.

kasey passenIn March 2017, thanks to Kasey, GLA held a highly successful education and cultivation event to raise awareness about Lyme disease in and around Chicago (Kasey, pictured at the first event with GLA’s Scott Santarella). Not five months later, she and three other Lyme warriors put together the first of what has become our hugely successful annual SubLyme Soirée event there.

But Kasey wanted to do something more. Before Kasey left us she spoke again with Scott about establishing a peer-to-peer network for Lyme patients. Kasey understood better than anyone that the Lyme journey is often a lonely one, even when you have a support system.

Sharing your story with a fellow patient and in turn receiving support and understanding is for many an essential part of battling this insidious disease. After Kasey passed, Scott made a promise to make Kasey’s dream—her legacy—come true.

We are therefore proud to say that in June of this year GLA launched the Peer-to-Peer Network in Kasey’s honor, modeling it after Imerman Angels. The Peer-to-Peer Network matches Lyme patients, caregivers and family members with trained Lyme mentors who have had the disease, who will provide one-on-one emotional and practical support and, thus, hope.

We thank Kasey for her idea, her passion, her understanding of the real power of compassion as it impacts the lives of those touched by Lyme disease.


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].

In the Lymelight podcast graphic



Season 2, Episode 6 with Gwyn Prentice, co-founder and creator of Helen Jon

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lyme Light aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco: I hope you enjoy listening in as much as I enjoy talking.

In our sixth episode of season two of In The Lymelight, Alex sits down with female entrepreneur, designer and fellow Lyme patient, Gwyn Prentice. The founder of powerhouse fashion brand Helen Jon and Alex discuss her diagnosis, IV antibiotics, being active while ill and entrepreneurism.

“My doctor came to treating Lyme because he started to notice that a lot of his patients that had depression, anxiety and mood swings actually had Lyme disease,” explains Gwyn. Listen to the full podcast below.

Find more In the Lymelight podcasts here.

Alex Moresco on StageOpinions expressed by contributors are their own.

For interview suggestions, information or just to say hi, you can connect with Alex at: @alitmoresco

red sox_jennifer crystal

What Can the Red Sox Teach Us About Surviving Tick-Borne Illnesses?

by Jennifer Crystal

When I told my family I was thinking of moving to Boston, my mom said: “As long as you don’t become a Red Sox fan.”

I had grown up a Mets fan, thanks to my baseball-loving grandfather who had watched every game and taken me to many. The family remained loyal to the Mets, but somewhere along the way my mother also became a die-hard fan of that other New York team, the one that shouldn’t be mentioned in Boston.

The first time I went to a Red Sox-Yankees game at Fenway Park, I wore a Red Sox t-shirt, with a tiny Yankees pin over my heart. Even though I looked the part, I didn’t really understand the Red Sox fans all around me. Why did they—and generations of their families before them—continue to support a team that had been purportedly “cursed?” A team that,—until 2004—had not won a the World Series since 1918?

When I discovered the answer, I realized that being a Red Sox fan is not unlike someone surviving one or more tick-borne illnesses.

Despite being loathed by Yankees fans and chided for their bad luck, Red Sox fans held on to their belief that their team would eventually “reverse the curse”. They did this because they had something their rivals did not: faith. In addition to complaining constantly during those 86 forlorn years, they did something else, too. They remained loyal, ignored the naysayers, supported their team, and adopted a get-back-on-the-horse attitude.

I had to do the same thing when I was fighting for a diagnosis, and then again when I was undergoing treatment for Lyme disease and two of its co-infections, babesia and ehrlichia. It took eight years for me to get an accurate diagnosis.  During that time I had waxing and waning symptoms such as fever, flu-like exhaustion, hives, and migraines. Eventually, I became completely bedridden, unable to work or care for myself. Even with my obvious physical deterioration, lots of people didn’t believe me. Even some doctors told me “you’re just being lazy”, “you just need to exercise more”, and “it’s all in your head.”

It wasn’t always easy to ignore these comments, especially when I was feeling so physically and emotionally fragile. I sometimes wondered if these people were right. But deep down, I knew they were not, because I knew my own body. I was an overachiever; laziness was not in my DNA. I was a skier and a runner, and desperately wanted to be out doing those activities. My fevers, rashes and headaches were not psychosomatic. I knew there was something physically wrong with me, so I persisted in searching for answers.

Had Red Sox fans given up after their team was cursed, they wouldn’t have had the glory of seeing them finally win the World Series 86 years later. Had I believed the naysayers, I would still be bedridden. I wouldn’t have ever gotten an accurate diagnosis, nor would I have tasted the glory of remission.

It didn’t take me 86 years to achieve remission, but it did take two once I started treatment, and another three after I suffered a relapse. Sometimes I felt like my diagnoses were a curse. I had to take intravenous antibiotics and strong anti-malarial medication, and even with those and adjunct treatments, I suffered Herxheimer reactions, meaning I often felt much worse before feeling better. My energy would start to improve and my symptoms would lessen, and I’d have hope that things were heading in the right direction, just as Red Sox fans had year after year when their team did well in the regular season.

But year after year, the Red Sox fell short of their goal. They had to come back the following season and start all over. I had to do the same. Even when I made it all the way to remission, I didn’t fully understand the nature of chronic illness, and got overwhelmed by factors that sent me back to the starting point. It took several seasons for me to find the right cocktail of medications and therapies, and to learn how to take care of myself so that my body would stay strong in spite of its limitations.

Throughout those years, I still had naysayers. There are people who don’t understand the relapsing nature of tick-borne disease and think any case, even one that went undiagnosed for eight years like mine, can be cleared up with three weeks of antibiotics. Those people are wrong.

People who move to Boston today might be similarly ignorant. If they don’t know the history of the Red Sox, they might think their baseball team has always been great. They might think the same of their new football team, too, even though the Patriots were not very good until they got Tom Brady—the doxycycline of football. Success hasn’t come easily for these teams. It doesn’t come easily for most patients of tick-borne diseases, either. Lyme disease and its co-infections are real. They take a lot of work and time to overcome.

We need to have faith that the more we spread Lyme-literacy, the more people will understand this. But even if they don’t, we can still have faith in our Lyme Literate Medical Doctors (LLMDs), and in our bodies, to see us through to victory. If that faith dwindles, we can always watch the Red Sox, who might just make it all the way this year. But even if they don’t, they’ll be back out there next season, giving it their all until triumph is theirs. And like baseball, it is often a team effort engaging one’s LLMDs, true friends and family members.

jennifer crystal

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]

life with lyme

Scheduling Life with Lyme Disease

by Jennifer Crystal

Flexible vs. rigid? How keeping to a schedule can impact one’s life with Lyme disease.


In 2007, I suffered a severe relapse of Lyme and two of its tick-borne co-infections Babesia and Ehrlichia. I had been in remission just a few months before I crashed back to ground zero. It took another couple years for medication and adjunct therapies to help me get back on stable ground.

I say “help me” because those therapies could only do so much of the work. The rest was up to me. I had to accept my illnesses and the limitations they imposed on me; this strategy became part of my “fight” against them. I had to make behavioral or lifestyle changes that would help my body heal, rather than just expecting it to do so regardless of how I lived.

One of those changes was creating and sticking to a strict schedule. My sleep doctor taught me that medication and neurofeedback would help my raging insomnia and hallucinogenic nightmares, but I also had to have good sleep hygiene. That meant going to bed and getting up at the exact same time every day. It also meant taking naps at the same time every afternoon. If I pushed my bedtime or nap-time too late, I wouldn’t be able to sleep, and everything would snowball until I was a melted down mess.

People who didn’t understand neurological Lyme disease thought I was too regimented. They laughed as if to say …

Would it really kill you to stay up an extra 15 minutes? Is it really that big a deal if you don’t get a nap today?” The implication being, “Can’t you be a little more flexible?”

Now that I’ve been in remission and steadily getting healthier for over a decade, I can be a little more flexible. Some nights I can push bedtime an extra hour and not pay for it too severely. But back when my health was super-fragile, there was no margin for error.

Even though I have some wiggle room with bedtime now, I do not have the same flexibility with nap time. If I lay down by 1:30 P.M. every afternoon, I get a good, comfortable nap, and wake up refreshed and ready to take on the rest of the day. If I push just half an hour until 2 P.M., everything starts to fall apart. My brain fog rolls in, I get cranky like a toddler, and I become too tired to fall asleep. Then I spend my time in bed anxiously rolling around, not getting the rest I need, and the remainder of the day—and sometimes the next day—is a wash. That half an hour is precious to me, so I’ve had to learn to advocate for it. I’ve had to learn what my limits are, which boundaries I can push and which I cannot. I had to learn to schedule my life—teaching, writing, socializing, accordingly. This discipline is, I’ve learned, the only way for me to control my tick-borne illnesses, rather than allowing them to control me.

The same is true not just for my daily schedule—which includes taking medications at the same times every day, and sticking to a consistent gluten-free, sugar-free diet—but for my weekly and more general schedule, too. When I was recovering from my relapse, I wanted to get better as soon as possible and thus scheduled more therapies and appointments than I could physically handle. I quickly realized that I did not have the energy to go to talk therapy and physical therapy on the same day. Conversely, my brain really needed three neurofeedback sessions a week instead of two. I started parsing out my week: physical therapy on Monday, neurofeedback on Tuesday, talk therapy on Wednesday, neurofeedback on Thursday, and so on. Getting well could not be rushed. It had to be my full-time job.

While I no longer need weekly medical appointments, I am still careful to stick to a schedule that works for my health. I teach classes in the mornings or evenings. I only write in the mornings, and not on days that I’m teaching. I don’t exercise during the week if I know I want to go kayaking or skiing on the weekend. I still go to maintenance integrative manual therapy and neurofeedback appointments every month.

I wish there was a magic schedule formula I could give all Lyme patients. But just as there is no set protocol for treating Lyme and co-infections because no two cases are alike, there is no set way for living your life with these illnesses. You have to learn your own limitations, and be willing to schedule your life within them. You have to learn your own boundaries and be willing to speak up for yourself. You have to learn which of those boundaries you can push and know what the consequences will be if you do so. And most importantly, you have to ignore other people’s opinions about your schedule. No one knows your body and its particular needs better than you do!

jennifer crystalOpinions 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]

Things I Never Thought I Would Do Before Lyme

by Kerry J. Heckman

On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is the right decision, that is,  which doctor to listen to. I just keep following my intuition and hope science will catch up soon.  

It’s been said that if you want something you’ve never had, then you must be willing to do something you’ve never done. In 2014 there was nothing I wanted more than to recover from Lyme, so I knew I would have to do things I’d never done to make it happen. At the time I didn’t know how far outside my comfort zone I would have to go, or even four years later I’d still be pushing those boundaries, but it’s a lesson I’m glad to have learned.

The first thing I never thought I’d do was get an MRI. I know, MRIs are no big deal, right? But because I have claustrophobia it was a prospect I had always dreaded. The thought of being put on a mechanical table and then slowly inserted head first into a small tube was terrifying to me. Now I’ve had five MRIs and counting, and each one gets easier than the last.

There’s a surprising benefit to constantly being forced to do things you never thought you’d do before—it builds your courage. Bravery is a muscle and when you use it, it gets stronger. Each time I came out of an MRI unscathed, it made the next one easier. And so my MRI challenges have had a broader impact on my life.

Here’s a few examples of things I never thought I would do:

I never thought I would stop eating bread.

I suppose I still eat “bread,” but it’s not that fluffy, doughy substance I once loved. I used to have some form of bread with every single meal. I was one of those people who didn’t understand gluten-free diets or the complexities of nutrition and digestion. It’s a challenge for me every day and I’m still not perfect, but the sacrifice is worth it.

I never thought I would take 50+ pills in a day.

I couldn’t even swallow a pill until I got to college and at that point I was taking an ibuprofen about twice a year. I rarely ever took medication. After I was diagnosed with Lyme, I started taking the handfuls of pills and supplements that’ are the norm for all Lyme sufferers. Now I can swallow a pill the size of a quarter— okay, that’s an exaggeration—but I can swallow just about any pill given to me.

I never thought I would get into a hyperbaric oxygen chamber.

A hyperbaric oxygen chamber is similar to an MRI, with one important exception—it’s a completely enclosed tube. This makes it even more intimidating for someone with claustrophobia since you can’t panic and get out at a moment’s notice because the chamber has to depressurize first. I had to train myself, but now I’m able to get this valuable  treatment without worrying.

I never thought I would go against one doctor’s advice to follow another.

There is a link between chronic infections and autoimmune disorders and when you have both you usually have two doctors recommending opposite treatments. On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is the right decision, that is,  which doctor to listen to. I just keep following my intuition and hope science will catch up soon.

I never thought I would quit my job.

I was a school social worker for ten years. I was happy doing what I loved and thought I would stay in that job until I retired. I had tenure, a pension, and the stability that most people crave. Then I got sick and didn’t have the energy to meet the demands of the job. It ended up being the best decision I’ve ever made for myself, but it was not in my life’s plan.

I never thought I would move across the country.

After a couple years of backwards priorities, I realized my health had to take precedence over everything. The extreme temperatures of the Midwest were getting to me and I felt like I’d exhausted my medical options there. If I was going to get better, I needed to make a drastic change: I needed to move. Uprooting my life took courage. I would not have been brave enough to do it without first experiencing everything else Lyme and its treatment required of me, starting with that first scary MRI.

This is just a small list of some of the things I’ve done in the past few years in order to live with Lyme disease.  It’s funny, among those suffering this disease I don’t even consider myself one of the brave ones. There are so many things I’ve seen Lyme warriors braver than myself take on and still manage to thrive. For instance, I’ve never had a PICC line or a port. I’ve never traveled to a foreign country to be treated by doctors who speak a different language. But I know I would do so if I felt it was necessary. That’s what Lyme teaches us—we are really braver than we ever thought possible.

If you can get through Lyme treatment, you can get through anything.

kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Chronic Illness is a Big Waste of Time

by Kerry Heckman

Every Sunday evening I get out my pill organizer and about 20 bottles of medication and supplements. I set up a station at my table and start dividing pills into little compartments for morning, afternoon, evening and bedtime. The entire process takes about a half an hour and a lot of mental energy. It’s not a big deal, but it’s just one example of the time-consuming tasks that go along with having a chronic illness. Things that we have to do that other people don’t have to think about. Each week I spend time ordering and picking up medication refills, making and attending appointments, and preparing special food from scratch. When you’re ill, taking care of yourself becomes a full-time job and everything is done while fighting through brain fog, pain and chronic fatigue.

Mundane tasks aren’t the only reason chronic illness is a waste of time. A lot of time and attention goes into self-care. It’s important but it still takes essential time out of the day. Every morning I meditate, do a few yoga poses, and use a detoxification technique called dry brushing. Then, in the evening, I spend at least a half an hour in an Epsom salt bath and prepare an essential oil diffuser to run while I sleep. Some Lyme patients sit in an infrared sauna or use an ionic foot bath. It’s great for our health, but it all takes precious time.

A big chunk of our time also goes to researching symptoms and treatments. Because research on Lyme disease and other chronic illnesses is lacking we are forced to do a great deal of learning on our own. This is done by reading books, articles, blogs, and message boards, in addition to communicating with others with similar symptoms. This can often lead to a rabbit hole and eat up hours at a time, especially since a lot of information on the internet won’t be relevant to you. On the whole, however, it’s time well spent, but it can become exhausting.

To top it off, people with Lyme are often forced to sit (or lay in bed) and watch life pass us by. We see our friends on social media hiking in the mountains, playing outside with their kids, or crossing the marathon finish line and think, “That could’ve been me if I hadn’t gotten sick.” Many of us have half-finished college degrees or gaps in our resume from when we weren’t able to work. No matter when Lyme strikes there are always missed milestones and lost years.

Recently, I was talking to my husband about how for the past two years we hadn’t been spending much time outside or taking advantage of all the thousands of things to do in Chicago where we live. It was then I realized that for most of the last two years I was either at work or on the couch. Time passes quickly when there isn’t much diversion. I imagine many other people with chronic illness wonder where the years have gone. We’re all waiting for the day we get better and can go back to doing everything we used to do.

In spite of everything, I have a strong drive not to waste precious time. Perhaps it’s because, like many people with Lyme, I’ve been forced to face my own mortality. I often remind myself I only have one life, no matter what circumstances I’ve found myself in. When I feel disheartened about the wasted years, I try to reframe the way I look at time. Lyme is a season in my life. In some seasons we are meant to be active and productive, but in other seasons we are meant to rest and recuperate. I know this season will eventually pass or at least get better.  I think this quote by TK says it all:

Be easy. Take Your time. You are coming home to yourself.

Maybe it’s not about wasted time. Maybe instead it is all part of a process of slowly becoming who you are meant to be. Some people are transformed by radical shift, but maybe people with Lyme need a softer transition. Like the caterpillar becoming the butterfly, we are slowly preparing to take flight.

kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

The Pressure of Platitudes: Patients Are Only Human

by Jennifer Crystal

As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave…Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

One of my creative writing students, a cancer survivor, recently wrote about a time when she snapped at a fellow patient. This was while they were both receiving chemotherapy. A man sat down next to her and attempted to make small talk.

Just wanting to be alone, my weary student made a nasty comment, and he left.

You would think she wrote about this exchange years after it happened because she felt bad about whatever she had said. In fact, she wrote about the experience because it illustrates an important point that often can be missed: patients are only human.

Patients of any serious or chronic illness frequently hear, “You are so brave!” or “You’re such an inspiration!” These statements can be true, and can be nice to hear. As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave: when I got my PICC line in, when I was fighting doctors and insurance companies who didn’t believe me, when I underwent emergency gallbladder surgery. Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

But there were also times when I wasn’t brave, too. Those times when I didn’t advocate for myself, times when I didn’t stand up to someone, times when I wanted to give in to the illnesses. There were and are still times when I am not an inspiration after all: times when I’m grouchy, times when I overreact, times when I snap at someone thoughtlessly. Times when I, like my student, am all too human.

No one can be all one thing all the time. Part of being human is being multi-dimensional. Therefore, blanket statements like “You are so brave!” and “You’re such an inspiration!” don’t capture the full patient experience. Especially when given without context—like when you say it to a cancer patient you’ve just met and know nothing about him or her. In this context such compliments seem disingenuous.

In her book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards writes, “I fear it’s too easy to lump together platitudes about those who are sick—that we are somehow stronger or better people for having endured pain or extreme obstacles; that because we’re sick, we’re martyrs and capable of serenely accepting challenges, setbacks and procedures without complaint.”[1]

Sometimes we are strong and serene and capable of enduring more than we ever imagined. But usually we withstand obstacles simply because we have no choice.

“Very often, illness doesn’t allow the luxury of courage; pragmatism and practicality dictate the extent of our fearlessness,” writes Edwards. “I take the medications whose side effects I hate because that’s all there is left to do. There is very little room for interpretation, inspiration, or intrepidness in these situations.” As a patient who Edwards interviewed put it, chronic illness makes us better sufferers, not better people.1

Platitudes can also put unintentional pressure on patients to live up to super-human expectations. They may think they have to put on a good face even when they feel awful, or that they have to be brave even when they are scared. Patients wrestle with how they “should” feel or look, especially when they hear that other well-intentioned but off-putting statement, “But you don’t look sick!”

Beyond negating how sick someone is feeling, such a  comment also makes them think they shouldn’t try to look their best when out in public so that people can see how sick they truly are. I can’t imagine the mixed messages model Bella Hadid must contend with, since it’s her job to look beautiful but also to show that she is suffering from Lyme.

So what is a healthy person to say to someone with a chronic illness? My first piece of advice is “ask, don’t tell.” Instead of telling the person what they are, ask them how they feel, both physically and emotionally. Are they feeling brave? Scared? Cranky? Let them know that they don’t have to put on an act for you.

Second, be honest with what you feel and see. If a patient has done something that you recognize to be brave or inspirational, by all means, let them know, but be specific. Say something like, “I think you were brave to look for a different doctor” or “That quote you posted about chronic illness really inspired me to better appreciate my good health.” This way, the patient knows your compliment is genuine. You’ll feel better giving it, and they’ll feel better receiving it.

Finally, remember that the best way to help someone is by empathy. Let your friend or family member know that instead of telling them what to do, how to feel, or what they are, you are simply there to listen and to be with them. Chronic illness strips patients of so much, but it brings to the forefront their humanness. Let the patient know that you, too, are only human, and that both of you walk that journey together.

[1] Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. New York: Walker and Company, 2008 (41, 42)

jennifer crystalOpinions 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]

lyme diet

Adjusting to a Lyme Diet

by Emily Croot

Learning to Love What There is to Eat When You’re on a Lyme Diet


For anyone familiar with the Lyme diet, you will know that while it is a useful healing tool, it’s also incredibly restrictive and difficult to adopt. Most Lyme patients are usually told to reduce foods that cause inflammation and this means eliminating gluten, lowering carbohydrate intake and limiting or entirely stopping dairy and sugar.

When I first made the transition to the Lyme diet I was a new college freshmen. The day after the doctor prescribed the diet I remember walking into the dining hall and letting out a cross between a laugh, a groan and a sob. There was absolutely nothing there I could eat. Spaghetti? Nope, for it contained tomatoes and gluten. Tacos? No again, corn and cheese. A veggie burger perhaps? That contains beans and wheat. A simple sandwich then? Well, not one with either chicken or bread.

Sitting down to eat with my plate of lettuce and carrots I suddenly experienced a very strong desire to throttle my doctor. She said that making the transition might be difficult, but that eventually I would adjust. But this diet was impossible! When exactly is ‘eventually’ anyway? Would that be before or after I died of starvation? Two minutes later I stalked out of the dining hall and proceeded to down a pint of ice cream while watching Parks and Recreation followed by a 30 Rock marathon in my dorm.

This was not a good start to my new Lyme diet.

Although I had been a healthy eater before Lyme, starting at Phase 1 of the diet seemed less of an uphill battle and more a cliffside plunge. Gone were my precious black beans, tomatoes and bell peppers. Locked away were my bananas, yogurt and peanut butter. And I hadn’t even begun to mourn the loss of ice cream, chocolate, and cookies!

As my Lyme disease advanced, I was forced to medically withdraw from college and return home. Despite the setback, I continued to plug along with the doctor’s orders. Breakfast was the easiest meal, eggs and a smoothie, but I missed slathering jam over English muffins or sharing extra cheesy homemade corn grits with my mum.

Lunches and dinners were a nightmare of endurance. Although we had Recipes for Repair: A Lyme Disease Cookbook, my family and I longed for our old standbys. Almost every one of our old recipes had an inflammatory ingredient and most of my dinner preps would end with me letting loose a couple choice expletives (though this  exercise was not limited to the kitchen).

During one such meltdown my mother gently coaxed me out of the kitchen to the living room, promising she would take care of dinner. She made me a cup of tea and let me cool off before joining me. She had noticed my increasing frustration with the diet and, though she supported my efforts, she recognized it was doing more harm than good. My mum agreed that gluten, dairy and sugar needed to be reduced but she recognized we couldn’t handle going all the way to Phase 1 of the diet. Moreover, after consulting a second doctor, we concluded my case didn’t warrant Phase 1 and switched to my mother’s more sensible dietary plan.

The next day we went on a grocery store shopping spree followed by a raid of our library’s cookbook section. When we returned home with our arms full of books and shopping bags, we were ready to tackle some new recipes. Our kitchen was now stocked with berries of every color, a forest of leafy greens, a myriad of strange and exotic vegetables, nuts and seeds of every shape and size, and spices from around the world.

With my cast-iron skillet in hand and a renewed enthusiasm for cooking, we figuratively ate our way across the planet. One night, as I wiped my eyes from the stinging onions and pungent garlic, the lights from St. Peter’s Basilica twinkled outside my window. The next night we sat on a New England beach, the salty breeze stinging our eyes as we slurped seafood chowder (dairy-free and gluten-free naturally). In the mornings we inhaled the sweet air of the English countryside over a bowl of fresh oats, honey and blueberries. And so each meal brought us to a different corner of the globe.

The anti-inflammation diet had become less of a schlep for me through culinary purgatory and more of a gastronomic expedition around the world. Although  are still times when I slip up and sneak a fresh baguette or a wedge of extra sharp cheddar into the grocery cart, those times are rare and enjoyed on only very special occasions.

Since starting mum’s dietary transition, I have fewer bad days and can manage my symptoms more effectively. Now I hardly give my restrictions a second thought. Who cares that I can’t have pizza when there’s Moroccan-spiced salmon, chana masala, or delicata squash soup?

Bon Appétit!

Opinions expressed by contributors are their own.

Emily Croot is a student, writer, and cook splitting her time between New Hampshire and Union College in New York. She wants to help others and change her little corner of the world one person at a time. 

A Letter to My Sick Self

by Bonnie van Geffen

One Lyme Warrior’s Letter to Herself


Dear Me, Dear Humiliated Me,

Please don’t ever call your body weak again. It had to fight so much for so long, that it’s one of the strongest you’ll ever meet. It had to carry so much and it fought so hard for you. Never forget that progress is a slow process.

Please don’t ever feel guilty again of not being the perfect friend, girlfriend, daughter or employee. You are not your disease. You’ve tried more than everything to keep up with life, but in the end, you lost. You fought an incredible battle. But a setback is just a set-up for a comeback. And one day, you will be winning again. You’ll proudly show your scars and scream “I’ve survived”.

Please don’t ever feel ashamed again, for not remembering things and asking questions when you should already know the answers. Memory loss is part of the disease, and some day your brain will function properly again. Remember that the people who love you, don’t blame you. So why blame yourself?

Don’t compare yourself to the girls who post sunny holiday pictures with the cutest outfits. When these girls wore sunny outfits, dresses, daisy dukes and high heels, you wore sweatpants 7 days a week. And you know what? That is okay. Really, it is. Your time will come too, and then you’ll feel confident and maybe even sexy. And you’ll buy all the dresses you can dream of. And the shoes too, of course.

Don’t accuse yourself of being difficult to love. Don’t you dare tell yourself that ever again. There is so much to love about you. When you feel hate for yourself, you are actually hating Lyme disease. But there is more to you than that. You are loyal, giving, generous and have such a big heart. Even with this debilitating disease and unreal medical bills, you still support people you love and give a lot to your family. And almost never ask for anything. Your soul is pure and your intentions are always good. Don’t blame yourself for the negative thoughts, but learn to understand that they are a part of this process. There will be a day when you will tell your mind to shut up when the bad thoughts will come again. You will beat this negativity. Yes, you will.

Don’t hate yourself. Stop hating your body. Your legs carried you through the hardest parts of your life. Your arms are strong. Yet they are also soft and can be used to cuddle and hold the ones you love. When you’re finally able to workout again, it will feel like the biggest victory you’ll ever know. I promise you that if you learn to appreciate yourself, your body will glow again. The scars will be evidence that you have won the fight. Celebrate the future and be thankful.

Please forgive your former friends for not being able to understand what it really means to be sick. They simply cannot empathize with you, and their lack of trying doesn’t mean they are bad people. It just means that life got in the way. Take it as a lesson learned. Now you know who really has your back. If you dare to let go, life will reward you with new people who will see the good in you when you feel lost or disoriented.

Please get rid of the idea that you can never thank your loved ones and friends enough for putting up with you. It’s not necessary to give them money or gifts. Remember that they support you because they choose to. Cherish them, and pay them back with love and unconditional friendship, because that is more than enough.

This is not your fault. Lyme disease is not your fault. But ten years ago, this stupid tick bite happened to you. Since then you’ve lost control over your body and life. If you blame yourself, please remember the tick bite and try to blame the tick. Quit being impatient, pat yourself on the back and remember how far you have come. You can do this. Hell yes, you can.

Opinions expressed by contributors are their own.

Bonnie van Geffen is a 29-year-old Lyme warrior from The Netherlands. She has experienced symptoms for many years but was officially diagnosed with Lyme disease a few years ago. After her initial treatment, Bonnie’s symptoms have now returned.

A Lymie’s View from 39

by Jennifer Crystal

Birthdays and milestones can have a different meaning for Lymies and people with a chronic illness.


When I was six or seven years old, I asked a great-aunt how old she was. Winking at my grandmother, she replied, “I’m 39.” I understood 39 to be the last good year, the last decent age before it all started to go downhill; the year by which so many life goals are supposed to have been achieved. I didn’t worry too much, though, because 39 was always a long way off. By then I would be married, have a family, be settled in my career and stable in my life.

That was before I lost a decade to illness.

I turned 39 last month and it looks a lot different than I’d imagined, which is not to say it looks bad. My tick-borne illnesses have been in remission for years. I am writing and teaching, skiing and socializing. I’m living on my own. The view from 39 is certainly better than it was at 29, when I was in the midst of a relapse, back at my parents’ house, pulled away from my independent life for a second time.

That year I wrote in my journal, “I’m turning 29, and what do I have to show for it?” It was a sentiment I felt many times throughout the harrowing years of illness. Unable to work or even leave the house except for doctor’s appointments and trips to the pharmacy, I questioned my self-worth. Birthdays didn’t feel like celebrations; they were reminders of all that I wasn’t doing, all that I couldn’t do, all that I might never do. They were reminders of another year passing by while I struggled to survive.

What I didn’t understand then is that fighting tick-borne illness is an achievement of its own. Getting well was my full-time job, and I was working overtime. Though I often felt awful, I made strides. I was going to neurofeedback, integrative manual therapy and talk therapy appointments. I was taking all of my medications and supplements. Twice a day, I infused intravenous antibiotics and cleaned my own PICC line. I was working through the physical, mental, emotional and spiritual upheaval of being sidelined by illness, and that was certainly worthy of celebration.

I did not yet understand that success is not defined by a career, money or status. Of course, I wanted all of those things, and still think it’s important to support yourself through a job you love. That’s something I’ve worked towards in my thirties. But the fact that it wasn’t possible during the lowest point of illness did not mean that I have nothing to show for those years. I still had my character. I still had my values. I still had my sense of humor. And those qualities deserved to be celebrated.

Still, 39 is not what I expected it to be. I’m not married. I don’t have a family of my own. I am working hard but am not fully settled or stable in my career. I’m grateful for how far I’ve come, but I still want all those other things, and I’d be lying if I said I don’t feel some angst about not having them by this age. Most of my contemporaries are married with kids and mortgages and careers that allow for nice vacations. I love those friends and feel connected to them, but I’m not on the same track as them. My major detour puts me more on track with friends who are 29, because they are at the same point in their careers and personal lives as I am.

But the fact is, I’m not 29. As much as I can appreciate all that I went through in my late twenties and early thirties, I can’t get those years back. My body is aging. When I went skiing this year, I fell on some ice and remarked, “I don’t remember it hurting like this when I was younger. I would just get up and keep going.” I kept going this year, too, but spent the next day icing my sore spots and taking ibuprofen. I’m getting wrinkles around my eyes. Once in a while I pluck a silver hair from my head. My hands are getting veiny the way my mom’s and grandmother’s did at my age. I can’t blame those signs of aging on Lyme disease; I’m simply getting older.

The reality is that my biological clock is ticking. That scares me. But I’m also still holding out hope. During years of illness when I thought I might spend the rest of my life in bed, I nurtured a glimmer of faith, and it worked. I got better. Maybe not as fast as I wanted to, but it did happen. So I have to have faith that I will achieve all my other goals, too, even if they’re not happening in the time frame I’d always imagined.

If my great-aunt and grandmother were alive today, I might wink at them and say, “Maybe by the time I’m 40.”

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]

Fighting ‘Fight or Flight’

by Jennifer Crystal

Does stress impact your Lyme symptoms? How do you react?


For a few days last week, I had trouble napping. This is usually a result of being physically and neurologically overtaxed, making me too tired to sleep. Frustrated and cranky, I got up after a couple hours and moved to the couch. I opened the windows, let the fight offspring air tickle my feet, and looked out at the budding trees. I put on some quiet music and lit a scented candle.

Sounds like a relaxing scene, right?

Instead of relaxation, I felt a familiar and unpleasant sensation creeping through my body. My breathing shortened. My legs felt jumpy. My thoughts raced. My heart rate quickened and my mouth grew dry. My whole body felt suddenly restless, even though I was so tired. As my Integrative Manual Therapist later confirmed, my limbic system had gone into “fight or flight” mode, defined by dictionary.com as “the response of the sympathetic nervous system to a stressful event, preparing the body to fight or flee, associated with the adrenal secretion of epinephrine and characterized by increased heart rate, increased blood flow to the brain and muscles, raised sugar levels, sweaty palms and soles, dilated pupils, and erect hairs.”

If I was lying on my couch relaxing, what was the “stressful event” to which I was reacting? For me, it was two-fold. First, my neurological system was stressed because it hadn’t gotten the sleep it needed.  Inadequate sleep is extremely stressful to the body. Whether I was lying on the couch or in a hammock by the beach, my overtired brain was bound to cause a fight or flight reaction.

Second, lying on the couch when I was so tired reminded me of all the times I’d been sacked out during the worst periods of my health journey, especially during my 2007 relapse. During those times I was terrified I would never get better, and the fear often manifested in a fight-or-flight response. While I wasn’t consciously thinking of that relapse after my recent napless afternoons, my subconscious must have. Remembering previous trauma, it immediately put my body into the same reaction it did at the time, in the same way that post-traumatic stress disorder gives victims flashbacks. The physiological basis for my fight or flight reaction was neurological Lyme disease, but it was exacerbated by lack of sleep and a traumatic memory.

A fight or flight reaction sounds complex, but is actually quite primitive. As Peter A. Levine explains in Waking the Tiger: Healing Trauma, “If the situation calls for aggression, a threatened creature will fight. If the threatened animal is likely to lose the fight, it will run if it can. These choices aren’t thought out; they are instinctually orchestrated by the reptilian and limbic brains.”

The Lyme patient, feeling threatened by the illness and all the neurological and physiological responses to it, has this same instinctual response. And while this makes perfect sense, it can be extremely frustrating to deal with, especially when all we really need is rest. With no energy to fight or stamina to run, we are stuck in park on our couches while our nervous systems race in overdrive.

So what’s a Lymie to do? Here are some tips that have helped me cope:

  1. Remind yourself that this is normal. Remember that such a response is instinctual and out of your control. You can, however, control your reaction to it. Simply remembering that this is your body’s natural way of protecting you may help to alleviate panic, which will help the response to pass quicker.
  1. Keep still. When the choices are fight or flight, your instinct is often to get up and run away. That’s only going to make things worse. It certainly can help to move to another spot (a different couch or chair, or a comfortable recliner), but don’t force your body to go for a walk or move in ways it isn’t capable of in an effort to “escape” the situation.
  1. Concentrate on your breathing. There are lots of great techniques to help you steady your breathing. One that works well for me is to breathe in through my mouth and imagine that breath filling up my belly; hold that breath in my belly for a count of three; then slowly release it back out through my nose for a count of five. Do this five to ten times.
  1. Hydrate and eat. Drinking water and eating a healthy snack can help stabilize your blood sugar, and your overall system. I also like to have some calming tea, such as Celestial Seasonings Sleepytime or Yogi Calming.
  1. Use neurofascial processing. Developed by Sharon Giammatteo, Ph.D., neurofascial processing uses light touch to help the body heal. In her book Body Wisdom: Light Touch For Optimal Help, Giammatteo states, “When you are frightened, severely stressed, or weakened due to illness or injury, your limbic system [within the cerebral cortex of the brain] will respond.” One simple way to calm your limbic system is to hold one hand across your forehead, above the bridge of the nose, and one hand over your kidneys, behind your back. You can do this while you’re lying down. Hold the position for at least 15 minutes. It may sound kooky, but I promise you, it helps! Worst case, your arm will fall asleep—and maybe even you will, too!
  1. Do some light reading. When I’m overtired, I don’t have the neurological capacity to read or watch TV, but sometimes skimming something light—even though I’d rather be sleeping—helps my brain and body relax.
  1. Call a friend. Part of the problem of fight-or-flight for Lymies is that we’re often alone when it happens, and that can be scary. Call or text a friend to help talk you through it, or to tell you a funny story.

I tried to follow my own advice last week when I went into fight-or-flight, and I am happy to report that within a few days, I was napping normally again!

Next week I will be answering questions from readers. Do you have a question about Lyme? Email me at [email protected].

jennifer-crystalOpinions 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]