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lyme warrior

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at [email protected].

I have tried several different medications for Lyme and am not getting any better. Do you think I just need to own up to the possibility that this is simply my reality and I should resign myself to it?

No! Treating tick-borne illness is complicated. It often takes a lot of trial and error to find the right treatment protocol, especially since what works for one patient might not work for another. When youre not feeling well, its especially hard to be patient with the process. You just want to get better, and you dont have the energy to keep waiting and trying things. I understand that. But difficult as it is, if you give up now, you will make your current situation your longterm reality. There were so many moments in my journey with Lyme disease and two other tick-borne illnessesbabesia and Ehrlichia—that I wanted to just throw in the towel. Thank goodness I didnt, though. After many different medications over many years, I have been in remission for over a decade, and my life is better than I ever thought it could be.

I suggest keeping a daily log of your symptoms so that you can chart any small change, good or bad, and so you can also give a detailed report to your Lyme Literate Medical Doctor (LLMD), who may be able to tweak to your protocol to address any new issues. So many times my LLMD would say something like, Oh, now that Im hearing how brain fog is bothering you, I think we actually need to switch to an antibiotic that is better for neurological symptoms.” Or, The symptoms youre telling me about indicate inflammation, so I think we need to add an anti-inflammatory medication.” If this fine-tuning isnt working, it may be time to seek a second opinion from a different LLMD. Sometimes it helps to have someone evaluate your case with fresh eyes. Be sure that you have been checked for all tick-borne diseases and are being adequately treated for any co-infections since a single tick bite can give you multiple infections.

Finally, its important to remember that medication is only part of the equation when treating tick-borne illnesses. Other factors like diet, sleep hygiene, and stress play a role in your bodys ability to heal. You may want to try complementary therapies such as integrative manual therapy or neurofeedback to help your medication work more effectively. There is always something new to try; never, ever settle!

What does the future look like for you?

This is a great follow-up to the last question. The answer is, I dont really know, and thats a good thing. When I was completely bedridden over a decade ago, the future looked bleak. I never thought Id regain my independence. I wasnt even sure if Id ever be able to walk around the block again. But now I am living on my own, working, socializing, and exercising, and enjoying a full life.

My path to health wasn’t linear. After regaining some independence, I relapsed all the way back to the starting line. If the future looked bleak before, relapse made me feel downright desperate. But I made it through, and have been in remission for over a decade, now that I know how to really manage my life in the context of these chronic illnesses.

Each year of this decade has been better than the last. There have been dips, of course: flare-ups of Lyme or babesia, acute illnesses like COVID-19 (link: : https://globallymealliance.org/corona-with-a-twist-of-lyme/). But overall, Ive made incredible strides since moving to Boston and starting graduate school in 2011. I can teach more classes now than I could after earning my M.F.A. in 2014. I can read for longer periods of time without getting neurologically overwhelmed. I bounce back faster when I push my body too far. I can ski more runs, swim more laps, paddle for more hours than I could a few years ago.

So, who knows how much more progress I will make in the next few years. Maybe Ill be able to juggle even more work projects. Maybe Ill be on a book tour. Maybe Ill reduce some of my medications. Maybe I wont need an afternoon nap. I cant say for sure what the future holds, but Im confident that more will be possible than I can currently imagine.

You mentioned that you cant work a traditional full-time job, so you work a few part-time jobs that fit your schedule. How did you find those?

One of the hardest parts of living with chronic illnesses was accepting that I wasnt going to be able to go back to the rigorous schedule I kept before I became ill. In order to maintain my health, I have to pace myself physically and neurologically. I also need to do adjunct therapies every week, which eat up time in my schedule, and I need to nap every afternoon. These needs—which I had to learn to see as just that, needs and not restrictions make it impossible for me to work a 9 to 5 job.

So I had to think outside of the box. What did I love to do, and how could I do that work on a flexible schedule? Instead of my old full-time high school teaching position, I now teach as an adjunct, at a creative writing center, and at colleges. My classes are scheduled in the mornings or the evenings, and class prep time is on my own. I was able to combine my passions for Lyme awareness/advocacy and writing into these weekly blog posts. I do one-on-one consulting work with writers, reviewing their work at home and then setting convenient meeting times (thats even easier now, with meetings happening virtually).

The current climate is difficult because the economy was closed for so long, but its also a good time for patients like myself with unique scheduling needs because so many jobs have shifted to work-from-home. Therefore, you may now be able to find part-time work that offers a more flexible schedule than it previously did.

Moreover, I recently learned about Chronically Capable, an employment platform that aims to connect chronically ill patients with remote work-from-home jobs. I have no personal connection to or experience with this platform, but you might want to check it out. Its important to think about what you can do and what skills you have to offer, instead of worrying about what you cant do. 

That said, working while chronically ill is not easy. You may not be able to cover all of your expenses. To address that Global Lyme Alliance has put together a financial resource page where you can find information on federal and state assistance programs and other resources.

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 warrior

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here she answers some questions she recently received. Do you have a question for Jennifer? If so, email her at [email protected].

Did your pain move sometimes? My worst pain is near some scar tissue.

Yes! One of the defining features of Lyme pain is that it’s migratory. This distinguishes it from, say, the pain of Rheumatoid Arthritis (RA), which is more symmetrical (both knees instead of just one), and which doesnt tend to move around like Lyme pain. While RA affects most of the joints, Lyme can affect one, two, or many.

I felt pain mostly in my forearms and shins, but also sometimes in my back, neck, and head. Sometimes my fingers ached so much I couldnt type, and other days they felt okay. Now that Im in remission, I know when Im having a Lyme flare-up because my forearms and shins start to ache. When Im overtired or I’ve over-exerted myself, I always get a headache on the left side of my head. (This is due to babesia, which eats oxygen in the red blood cells. When I over-exert myself, I dont get enough  oxygen to that side of my brain, causing inflammation and subsequent pain).

Moreover, Lyme loves to hide in scar tissue, so it makes perfect sense thats where youre having the worst pain. I had the anterior cruciate ligament of my left knee repaired before I was aware I had Lyme, and it took much longer for that knee to heal than it should have; this is likely because there was Lyme bacteria in the scar tissue. I’ve also had multiple eye surgeries, and my doctor suspects scar tissue over my left eye is why my headaches often start there.

Is the word cured” ever used with tick-borne illness?

Yes and no. It depends which illness you have, how long youve had it, how quickly you got treatment, and how well you’ve responded to treatment. If Lyme is caught early and treated adequately with two to four weeks of antibiotics—and if it is not complicated by co-infections—it can conceivably be cured. However, even in those cases, some 20% of patients still experience ongoing symptoms called Post Treatment Lyme Disease Syndrome (PTLDS), and they can require additional treatment.

My own Lyme is in remission, not cured because I went eight years undiagnosed. By then the bacteria had crossed the blood-brain barrier. Once its in the central nervous system, it becomes very difficult to fully eradicate it. I’m probably 80% restored to full health, a percentage that has continually improved (with brief periods of flare-up).
There are others who have had PTLDS who claim to have been cured, but some of these have subsequently relapsed. It really depends on each individual case.

I was originally diagnosed with the co-infection Ehrlichia, and that is now considered to be cured. I no longer test positive for it or show specific symptoms. The co-infection that still gives me the most trouble is babesia. I was not surprised to hear doctors at this years ILADS conference say that babesia can be treated to an extent—symptoms can be alleviated and held at bay for a while—but that it often rebounds. Currently, babesia has no cure.

But don’t despair. Researchers are getting closer to using that coveted word cure” every day. See my “Highlights From ILADS 2019” post that provides information on new drugs like Dapsone and Disulfiram, the latter of which has some patients, as Dr. Kenneth Liegner stated, enjoying enduring remission,” that is, feeling well for six months or longer. Its too early to use the word cure” decisively.

Do you think Im going down the right path, being treated for tick-borne disease?

I know it can be confusing when so many doctors give you different diagnoses and treatment options. You dont know who or what to believe, and that is scary. Even two different LLMDs might give you two different protocols (and thats because they each have a personal opinion on what might work best for you, since there is no single set protocol for treating tick-borne disease).

If you trust the LLMD who has made a clinical diagnosis of Lyme with or without co-infections, and your symptoms corroborate those infections, and/or your blood work confirms those infections, then yes, I absolutely think you are going down the right path. Remember that having Lyme is not a choice.

Once you begin treatment, youll know for sure if youre on the right path. If you do have Lyme, youll likely have a Herxheimer reaction (when the antibiotics kill off the Lyme bacteria at a rate faster than your body can eliminate them, making you feel worse before you feel better). That could be a good indication that you should stay the course.

The real question is, do you feel like you are going down the right path? No one knows your body better than you do. You know you are sick. You know what your symptoms are. You know they are not all in your head. If youve seen an LLMD and feel in your gut that the doctor is right for you, then trust that feeling, and dont worry what anyone else says.

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].

Couple on a date at a restaurant

On Disclosure: When and How Much to Tell

By Jennifer Crystal

Patients often ask me when, and how much information they should disclose about their illness(es) to employers, new or casual acquaintances, or dates. While theres no set answer to these questions, my trial-and-error experience in each realm has given me a certain measure of insight to share.


When I was first in remission from Lyme and two other tick-borne illnessesEhrlichia and babesia—I took a remote, part-time editorial assistant job for a magazine. I wrote and edited from home, which allowed me to make my own hours. The situation seemed perfect! I worked in the morning when my focus was best, and napped in the afternoons without anyone knowing. I didnt tell my boss about my health situation. I worried that if she knew I had Lyme, she wouldn’t think I was capable.

My plan went well at first. I met all of my deadlines. But symptoms of my tick-borne illnesses started to return. I continued working hard, which only made my neurological symptoms worse. Before I knew it, I was in full-blown relapse. I had trouble concentrating, reading, and writing, and was bedridden with exhaustion. I had no choice but to tell my boss. I feared the worst, but her response was a pleasant surprise.

Oh, I know you have Lyme,” she said. I read your article about it in the college alumni magazine.” Id forgotten that my boss had attended the same college as I had, which meant she would have seen an essay Id published about my medical experience. Im so amazed with how much work youve been able to do in spite of all youve been through,” she said. She offered to lighten my workload, and then gave me (unpaid) time off so I could recuperate.

I was very lucky. Not every boss would have reacted the same way, and not everyone can afford unpaid leave. Its important to find out in advance what a companys medical leave policy consists of, which you should be able to do without actually disclosing your situation. How much you disclose and when you disclose it also depends on whether you are legally considered disabled, which earns you rights that patients without that official stamp dont have.

Since achieving remission once more, I’ve had to think outside the box about employment that works within my needs. I  now combine writing gigs that I can do from home with classes that I can teach at times of day that work for me. My current employers know my situation since I write about it publicly, and that allows us to talk openly when I do need any accommodation.

Remember, always, that Lyme is not your fault. You are trying to work in spite of it, which shows determination and effort, not weakness.

New acquaintances

During my first period of remission just described, I attended a birthday party of an acquaintance. I knew hardly anyone there. When someone asked what Id been doing before starting my magazine job, I froze. The party was loud and crowded, and we were there to celebrate someone else. I did not feel it was the place to share my Lyme story, but I had been mired in illness for so long that I didnt know what else to say. We ended up having a very awkward conversation, and I left feeling embarrassed.

After that, I came up with a more pat answer to share. Oh, I was dealing with some health issues for a while, but Im much better now.” However, you dont even need to share even that much information if you dont want to. You are free to say, Im doing just fine, thank you” and re-direct the subject of conversation elsewhere. Have a few topics on hand: sports, the weather, what youve heard about a new TV show (even if you havent been able to watch it).

For me, Lyme comes up quickly, because as soon as people hear Im a writer they ask, What do you write about?” Thats when I have to consider, Is this someone with whom Id like to share my Lyme story, and is this an appropriate place in which to do so? If  I’m hesitant I simply reply, I write for a health organization,” or I focus on medical writing.”

The most important lesson Ive learned when sharing with new acquaintances is to know your audience. Gauge what reaction you might get if you do share, and also gauge how comfortable you feel telling your story. Remember you dont owe anyone an explanation; there is a lot of information they are probably choosing not to share, too.


When I first started dating with Lyme, I worried constantly about whether to tell my dates about my medical condition, or when to do so. I wanted to be honest, just as I wanted my date to be forthright with me, but I didnt want to scare anyone away. I also didnt want to spend the whole first date talking about Lyme when we could focus on other topics more interesting to us both.

The first lesson I learned was to choose a date location that didnt immediately call for some sort of explanation from me. If we met for drinks, Id order a seltzer, which would naturally lead to questions about why I wasnt drinking. Now, if someone asks me out, I suggest ice cream or coffee, or an activity date like a walk in a park.

After gaining some dating practice, I realized I was only sharing my story if I liked the person and wanted to see them again. Otherwise, it didnt feel it was worth it; they didnt need to know so much personal information. Whether or not I brought up Lyme became a good indicator for whether or not my date was a good match.

I also realized that I didnt have to share my whole story on one date or even three. I could peel back the layers of it in the same way someone might slowly share information about their family or past relationships. As someone grew closer to me, they got to know more of my medical story, yet that story became only part of the whole person they were getting to know.

Its important to remember that everyone has baggage”. You may be nervous about sharing about Lyme, but your date may be nervous about sharing about another medical condition, or about a divorce, or about a difficult family situation. These situations arent burdens. Theyre experiences that make us who we are, and with the right person, we can share and even celebrate the lessons weve learned from them.

While theres no right or wrong way to go about disclosing your Lyme story, the important thing to remember is that the story is yours. You have control over if or when you want to share it. Its your truth, and you decide if someone else deserves to hear it.

jennifer crystal_2Opinions 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].

REGAINING CONTROL …of your day, life… Why agency is important for Lyme warriors

by Jennifer Crystal

Agency—or, having a voice, having the power to make free choices about issues related to you or your body—has been a big buzzword in the news lately. I’ve been thinking about the word in the context of my own life.

For nine months, I was in a serious relationship with a man who seemingly understood and supported my needs as a chronic Lyme patient. And then, suddenly and without warning, I wasn’t. He decided he was done and simply informed me of his choice; I had no say in the matter.

Had the breakup happened mutually, or at least over time—with the discussion and effort we’d promised each other—it still would have been difficult, but at least I would have had some agency. And for a patient of chronic illness, that’s not a small thing.

Having the bottom drop out on my personal and emotional life was a sad reminder of the ways it had dropped out on me physically, many times. The chronically ill, and people who suddenly become sick or injured, are stripped of agency. It happens when we get sick without warning, when we can’t control how or if we’ll get better, when we’re dismissed by medical professionals. As a result, it’s that much more frustrating when we can have a say about something, but aren’t granted it.

Everyone deserves a voice. I learned this years ago as a summer camp counselor. During counselor meetings we would discuss issues campers were having due to behavioral challenges. A wise colleague taught us that every child needs four things: love, safety, fun, and power. When one of those basic needs is threatened, kids act out. I readily understood why children need love, safety, and fun. But I realized they need power, too, because they are often told what they can and cannot do; they don’t feel like they have a say over their lives. Giving them agency makes them feel more in control. Campers were less likely to break cabin rules if they helped create them.

When a Lyme Literate Medical Doctor (LLMD) finally put the pieces of my medical puzzle together and made an accurate diagnosis of Lyme disease—in addition to the co-infections babesia and ehrlichia—I at last felt I was heard and validated. Treatment was long and arduous and I had little control over how I felt day to day, but as I regained strength, I also regained agency. Over time, I could rely on my body more. I eventually knew when I would have good energy and when I wouldn’t, and learned habits to promote the good energy. I learned to speak up for my needs. Tick-borne illnesses were no longer completely running my life.

Then the bottom dropped out again: I relapsed. I fell into a pit of despair, not only because I was physically back at ground zero, but because I’d had no say in getting there. Sure, I’d taken on a lot and gotten overly stressed, factors that I now know can play a role in relapse. But the relapse itself was not my doing. That was up to the spirochetes that ran rampant in my body. I hated that I was once again at the whim of my illnesses, not of my own free will. I couldn’t work, live independently, exercise or do anything I wanted to do, and I railed against that loss of freedom.

Cognitive behavioral therapy helped me to take control over little things, even though so much was out of my hands. I had no say as to whether the antibiotics would work, how long it would take for me to get well, or if I even would. But I could control choices that would help my chances of my achieving remission. I could parse out my energy. I could limit screen time that riled up my neurological symptoms. I could eat healthy foods. I could say no to going somewhere or doing something when I didn’t feel well enough to do so.

And I could say no even if I did feel well enough to do something. One night during my recovery, my parents invited me out to dinner. It was a sweet and generous offer. They were surprised when I declined, because I seemed to have good energy that night. Why wouldn’t I go out if I could? But I didn’t want to go out to dinner. I wanted to stay home and have a little time to myself, maybe call a friend. Making decisions about what I wanted to do, instead of feeling like I had to do something just because I could, was an important way of maintaining agency.

We can’t always guard against the bottom dropping out in life. But sick or healthy, it’s important that we allow ourselves agency over those small things we can control. And it’s especially important for us to respect others enough to give them a say over matters that pertain to them or their bodies. We all want to take part in our own lives, not have life just happen to us. Everyone deserves that power!

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

A Hard Day’s Night

By Marisa Mann

Fighting Lyme and Mast Cell Activation Syndrome After Dark

Can you imagine a life where you wake up at least one night a week with violent food poisoning? No, I’m not talking about traveling through Southeast Asia. What I’m describing is actually my life. I’m not being dramatic. You see, I have Mast Cell Activation Syndrome, a poorly understood immunologic condition which I developed as a result of chronic Lyme disease and other tick-borne co-infections. This causes me to have extraordinarily overactive histamine reactions to basically everything. Think of my mast cells as overreactive, neurotic Jewish mothers (I can say this because I am one).  In order to keep these melodramatic mast cells of mine in check, I’m on an extremely restricted diet. No dairy, no gluten, no soy, no grains, no sugar, no fun. And yes, this also means no alcohol. Two insane kids, a bipolar dog (still awaiting an official diagnosis), and no vino for momma. I eat a diet consisting of meat and eggs in order to keep my Lyme and mast symptoms at bay. I know, it sounds extreme, and it is. What people don’t understand is that It’s a matter of being able to breathe and not have my throat close up on a daily basis.

The middle of the night episodes are wretched. I have them almost weekly now. They usually happen sometime between midnight and 3AM. I go to sleep most nights dreading what might be. Never mind the fabulous dreams I’m interrupted from. And then BOOM, I’m jolted awake by a sickening sensation. I rush to the bathroom in a cold sweat with uncontrollable shivers wracking my body. Sprinkle in some heart palpitations, muscle spasms, near-fainting, a feeling of doom, shortness of breath and violent gastrointestinal distress. There you have a typical mast cell attack. Sometimes it’s over fast, a violent episode that leaves me bone-tired and depleted.

At other times it lasts longer and is accompanied by terrifying panic attacks. These attacks are often followed by a horrifying feeling of depersonalization, a feeling of complete disconnection from reality; it’s like I’m outside my own body looking in. There were times when I was convinced that the men in white coats wielding giant sedative-filled syringes were coming for me (which, now that I think of it, sounds appealing in the midst of an attack). The morning after an episode like this, I generally awaken weak-kneed, woozy and reeling from the terror in the night. I often walk around feeling quite shell-shocked the rest of the day.

The good thing is that I at least now know why these episodes occur. For the longest time, I just assumed I was dying or going crazy. Other times, I was convinced I was dying and would get really annoyed that my lifeless body was going to be found on the bathroom floor, not even wearing decent pajamas. Laying between hurls on the cold hard bathroom floor shivering and twitching, I would silently berate myself for not investing in that silk kimono. But now at least I know I am neither dying nor going crazy.

No one, including my closest friends, have any idea that this happens to me.  Those who do know that I’m sick often remark at how good I look. (Let it be known that it takes copious amounts of concealer and plentiful bronzer to hide the carnage of really bad nights and produce this effect.) I don’t like to tell friends or family members about my illness because its hard to relive the terror of the episodes, and it’s just easier to pretend that I’m normal and that everything is peachy.

Sometimes I’m afraid to talk about it. It’s like there’s a giant dam holding back the pain and fear and sadness that will break and come spilling out. My husband is really the only one who knows the extent of my nighttime woes because he is the one who wakes up when my shivering body and chattering teeth shake the whole bed. He is the one who touches my forehead (he always assumes I have a fever) and brings me water when I’m too weak to do it myself. He is the one who bears witness to the pain. The girl who walks around with the perfectly contoured cheeks and big smile is who the rest of the world sees.

Naturally, I don’t walk around feeling sorry for myself. From time to time I allow a day for self-pity, but I don’t allow myself to dwell there.


marisa mannOpinions expressed by contributors are their own.

Marisa is a consultant for a cosmetics company and has her masters in clinical social work. She is Lyme warrior who is fighting the good fight and won’t back down. She is a mother of two spirited children and an even more spirited dog. She enjoys yoga, researching skin care ingredients, and spending quality time with family and friends.

The Time Warp of Tick-Borne Illness

by Jennifer Crystal


I’d already lost three years of my life to illness. Then I got a taste of resumed independence and health, only to have those intimations of well-being quashed once more. The rush to get back on track and catch up to my friends felt even more pressing when I relapsed. Time seemed to be moving too fast.

Time is a funny thing. As children we hope for time to pass quickly, so we can get to the next big milestone: a birthday, Christmas, middle school graduation, a driver’s license. When we turned 21, my friends and I were excited when we didn’t get carded in a bar, because that meant we looked our age. We always wanted to look and be older than we were.

When we turned 30 we hoped we would be carded, because that meant we looked younger than we were. As we aged, we were no longer hoping for time to pass quickly; we wanted it to slow down. We missed the good old days of college, when life was simpler. Now we couldn’t believe how fast time moved. In the blink of an eye friends were getting married, having babies, buying houses. Then we were forty and people were practically shouting, “Slow time down! We’re already at mid-life!”

As a patient of chronic tick-borne illness, I was having a different sort of mid-life crisis.

I had missed the latter half of my twenties to illness, and didn’t earn my graduate degree until my late thirties. At 40 I was just starting to look for the serious relationship and the serious job and the life plan that my contemporaries had figured out a decade earlier. Now, I still feel like I have a lot of catching up to do. It’s hard but I try to accept that I’m moving at my own pace and will achieve my goals in my own time, the same way I achieved remission over many years.

During the first five years that I battled tick-borne illness, I had one major relapse that set me back to square one. I was 28 years old. I’d already lost three years of my life to illness. Then I got a taste of resumed independence and health, only to have those intimations of well-being quashed once more. The rush to get back on track and catch up to my friends felt even more pressing when I relapsed. Time seemed to be moving too fast.

It also moved very slowly. I was all too quickly reminded how days drag on when you’re bedridden. It can be hard for healthy people to understand this, but now that I’ve stood on both sides of the time divide, I understand why it’s difficult for each side to understand the other.

When you’re healthy, you’re out living your life. In a day’s time you might work, take care of your kids, go grocery shopping, do laundry, run errands, put out small fires, and fall into bed at night realizing you never called so-and-so back or returned an email, because the busyness of daily life got in the way.

When you’re sick, you’re waiting all day for that phone call or email, because you have nothing else to do. You can’t work or even leave the house, and most days you’re too tired, and your brain fog is too wearying, to do “restful” activities like watch TV or read. You just sit there listening to the tick of the clock, waiting to get well, waiting for someone to call, waiting for something to happen. It’s excruciating.

The divide between healthy time and sick time can feel like a glass wall. You can see in to the other, healthierperson’s world, but you can’t step through the barrier and rejoin it. Sick people can envy healthy people because they’re able to do everyday things. But we don’t always understand that those things can be draining and overwhelming to the point that the healthy person can’t keep up with everything, including checking in on asick person.

On the flip side, healthy people can envy sick people because they think it sounds nice to have so much “free” time. They’d like to lounge around, to read or watch TV, but they don’t realize that the sick person doesn’t feel well enough to enjoy those basic activities. Living with chronic tick-borne illness is like having the flu and a hangover every single day, sometimes for years on end.

Being sick is not a vacation, and being healthy is not a walk in the park.

Sick people may eventually get well enough to cross the wall into the world of the healthy. Healthy people could take sick at any time. We can’t control when we will break through the glass wall dividing those two worlds. We can, however, peer closely through the glass, seeing more clearly what life looks like on the other side.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick-borne illness, for which she is seeking representation. Contact her at: [email protected]

lyme blog_treat yourself

Treating Instead of Denying Yourself

by Jennifer Crystal

Spring is a time of rebirth and renewal.  Many people engage in some kind of spring cleaning, whether it is airing out their homes or themselves. People open their windows and shake out their rugs. Some do a dietary cleanse. Even religious customs at this time of year are about cleaning out and letting go—Jewish people rid their houses of chametz, leavened food, for Passover, while Christians give up something in observance of Lent.

These customs have good intentions. I respect them and understand the purpose they serve. But this year, after reading a friend’s recent social media post, I started thinking about them a little differently. On Ash Wednesday, which starts the period of Lent, my friend announced that instead of giving something up for Lent, he was going to treat himself to one small, special thing each week.

I stopped to consider this bit of reframing. What if the season wasn’t about denying ourselves something, but instead about adding something positive to our lives? What if it was about nourishment, the way we nurture early spring flowers so they can grow? Refusing ourselves something can hold a negative connotation, but nourishing ourselves has a lovely ring of self-care.

As a patient of chronic tick-borne illness, this reframing especially struck a chord with me. Lyme patients already are denied so much. At our sickest, we can’t work; we can’t socialize; we can’t take care of our daily needs. We’re restricted, and that can make us feel guilty, sad, ashamed, and angry, on top of feeling physically wretched.

Treating Lyme and other tick-borne illnesses means giving up a lot: for me, it means refusing gluten, processed sugar, alcohol, and caffeine. I cannot stay up late, skip my afternoon nap, watch fireworks or a stimulating show, or over-exert myself physically or mentally. These are my needs and they’re in place for good reason. I’m grateful that they allow me to keep ticking.

But sometimes I do feel like I give up a lot—and certainly have given up a lot of bigger things over the years, like long-distance travel, friends’ weddings, financial security, and full-time work at a time when I was supposed to be starting my career and building my life. With those losses came depression, anxiety, and self-blame. It took me a long time to accept my needs and to love myself in spite of them.

This spring feels like an excellent opportunity to renew that self-love. Part of caring for yourself, of course, is recognizing certain things are toxic to you and you must get rid of them. Elimination of foods, stressful people, and negative emotions that hurt you— all are important for self-cleansing. If you are a Lyme patient eating batches of chocolate chip cookies, you are probably overloaded with gluten and sugar, suffering from a candida infection, and jeopardizing your ability to get well. Getting rid of those foods would be a good way to nurture yourself toward optimal health.

But what else can you add that is healthy and feels like a treat? There are lots of great recipes for gluten-free, naturally sweetened brownies and ice cream. These I still eat in moderation, but that makes them all the more special when I do indulge. Dark chocolate is low in sugar and has many health benefits. Eating one piece every day puts a smile on my face.

How else can you fill yourself up rather than deplete yourself? I recently started treating myself to monthly massages. I couldn’t have done this when I was in the throes of Lyme, since a massage likely would have spread toxins further around my body, but now that I’m in remission, gentle massage is good for me. I leave feeling relaxed, my nervous system reacts in kind, and I am able to nap and sleep better.

Your treat doesn’t need to be something big, though. If you are bedridden, there are still ways to nourish rather than deny yourself. How about flipping through photos of happier times, to remind yourself of what will again be possible once you’re well? Or writing down three good things about each day? Or rubbing a nice lotion on your hands and feet? Or finding a favorite new fruit or vegetable to add to your diet?

Cleansing is important. This season, I’m going to make sure the things I do get rid of are things I really don’t need, rather than things I want but am denying myself. In this way, giving things up will be a way of treating myself. In addition to getting rid of things, I am also going to add goodness, to think of more ways to be kind to myself, so that I enter summer ready to blossom.

jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: [email protected]

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below are her responses to a few recently received questions. Do you have a question for Jennifer? If so, email her at [email protected].

When a patient has a Herxheimer reaction, does she experience whatever symptoms are specific to her case, but enhanced? I have heart palpitations and headaches.

This is great question, coming on the heels of my recent column, What Does it Mean to Herx? As I explained, a Herxheimer reaction is when antibiotics kill off more Lyme bacteria faster than the body can eliminate, so there is a lag. This makes the patient feel worse before she feels better. For me, this resulted in increased sweating and elimination, as my body sought to detox itself. It also meant an increase of symptoms I had otherwise experienced at a lesser degree. I was extremely fatigued, had severe migraines, and my joints ached.

I never had a specific symptom like heart palpitations during a Herxheimer reaction. But, yes, on the whole it would seem that herxes bring out exacerbated versions of each of our own symptoms, since every Lyme patient experiences the disease differently. Some have heart issues, some have gastrointestinal issues, some neurological impairment while others have impairments which are strictly physical. Because spirochetes like to squirrel themselves away from antibiotics, getting deeper into joints and tissues and sometimes crossing the blood-brain barrier, it’s possible that new symptoms can crop up.

In my experience, this is not the result of a Herxheimer reaction, but rather a result of spirochetes growing and spreading. A Herxheimer is a reaction to dead bacteria in the body. Entirely new symptoms are more likely to be signs of live bacteria. If you’re suddenly experiencing new symptoms that do not seem to be part of a typical Herxheimer reaction, it’s important to check with your Lyme-Literate Medical Doctor (LLMD) to see if you might need different or additional treatment.

Have you dealt with Lyme depression? How did you motivate yourself when you had to go through a bout of this?

Yes. For many years I fought against the fact that Lyme made me depressed. But because so many people—including some doctors— told me that I wasn’t sickand that my symptoms were all in my head, I thought that if I showed any signs of depression, I’d simply prove those people right.

What I ultimately came to realize is that my depression was an effect of my tick-borne illnesses, not the cause. I was depressed because I was physically sick. I wasn’t physically sick because I was depressed. That’s an important distinction, and once you recognize it, dealing with your depression becomes easier to accept as part of a physical and neurological illness that affects you emotionally and mentally. It’s completely natural for someone who is physically sick to feel mentally depressed. When I grew sick, I quit my teaching job in Colorado and left the the skiing life I loved, I moved back with my family in Connecticut. Who wouldn’t be sad about that? Who wouldn’t get downhearted, anxious, and fearful about being bedridden?

Spirochetes running rampant in your brain, and even the side-effects of certain medications, can induce symptoms of depression. Your depression could be both situational and chemical.  It’s important to talk to your LLMD about your symptoms. It may even make sense for you to see a psychiatrist or a talk therapist, or both; there’s absolutely no shame in that. It’s all part of healing your whole self from tick-borne illness. I needed anti-depressant medication for a time and talk therapy as part of my overall medical plan. They wouldn’t have worked alone, since I was fighting a physical disease that needed its own treatment, but they were an important adjunct therapy.

In addition to seeking medical support, there are a few things that helped motivate me during a bout of Lyme-related depression. The first was to recognize that this, too, shall pass—even when I was feeling this way for weeks or months, even when it seemed like there wasno foreseeable end in sight to my illness. I promise you it does get better. In the  “Writing to Heal”classI teach, I draw a spiral on the board to remind students that grief—like recovery—is a spiraling process. It’s not linear. You go through some good periods, then spiral downward a bit, then buoy back to the surface again then repeat the spiral. It’s a tedious process, granted,  but as a whole, the spiral is always upward and forward away from illness and toward health. When you go through a bout of Lyme depression, you are not back to square one. You are somewhere further along that arc towards health, just currently at one of its low points. You have already come this far and you have to remain confident and keep moving forward, knowing that you will slowly get better.

To help motivate yourself, I recommend talking to supportive friends, getting lots of hugs from them, and have them tell you some funny stories. In other words, don’t lose  your sense of humor; (laughter can be the best medicine!). Moreover, journaling not just about how you feel but about what you hope your future will look like; doing simple arts and crafts like coloring or scrapbooking; listening to classical music; and treating yourself to something to like a bubble bath or a pedicure. Be gentle with yourself!

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

[email protected]

Spring REALLY Will Come

by Jennifer Crystal

This time of year can be a tease. With daylight savings time, the sun is suddenly brighter, and there are hints of warmer weather coming, Not surprisingly, we start to think it’s almost spring. Birds chirp. Early flowers bloom. People are smiling again. Then a late-season storm hits. The flowers are buried, the outraged birds squawk, and people become more downcast than in the deepest throes of a January freeze. We curse and wonder if spring will ever come.

Every year when this seasonal give and take happens, I’m reminded of my long, uphill battle against tick-borne disease. At first, when I was bedridden and sick, it was always winter. I saw no hope of a metaphorical spring. But the longer I was on treatment and the harder I worked at adjunct therapies, the more glimpses of health I received. Eventually I started having strings of good days. My head was clearer; I could type and read short articles, I could walk short distances. My joints didn’t hurt. I sometimes made it a full week without a migraine. I felt like I was actually making progress.

Then I’d get walloped with a Herxheimer reaction. My body would get overloaded with dead bacteria killed off  by the antibiotics. This was a good thing, but the drugs were killing spirochetes at a faster rate than my body could eliminate them, which made me suddenly feel awful. I crashed as if I’d been hit by a freakblizzard.

These glimmers of health, of spring, can feel like teases, but they’re not. They are, in fact, signs of what’s to come. Eventually, my Herxheimer reactions became fewer and I had more good days than bad. That took a long time to achieve. I was almost a year on intravenous antibiotics. Then I felt good for two seasons before completely relapsing back to winter. But even then, my body fought its way back to remission.

The trajectory is different for each Lyme patient, because no two cases are alike, and co-infections can complicate treatment and recovery. Some patients feel better in a matter of weeks or months. Some are sick for years. Some “herx” every couple weeks and follow a relatively steady cycle of that pattern; some get shorter or longer periods between herxes, with little to no warning when they will manifest.

For all of these patients, remember, spring is possible.

I lost several years of my life to tick-borne illnesses. Even when it was beautiful and warm outside, I was in bed. I felt stuck in endless winter. Then I went through periods with teases of spring. But now, those wintry days are so rare than I can count them on one hand. With maintenance medication and therapies, I’ve stayed in remission for a decade, charting steady improvements each year.

No matter how many late season storms we get, no matter how long the snow lingers on the tips of daffodils, spring eventually arrives. Every single year. If you are a Lyme patient feeling stuck in endless winter, I assure you that your spring will come, too, and the sun will feel even warmer than you imagine.

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

[email protected]