Tag Archives: Lyme disease blog

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].

No Set Protocol

by Jennifer Crystal


Patients often write asking how I fought off Lyme and two other tick-borne diseases. I understand why they ask. When you read that someone is doing well, you want to know how they got there. Im always curious about the techniques others patients have used, too, and am eager to learn about the latest treatment options. I love connecting with other Lyme warriors. But I cant give them my medical protocol.

Its not because I dont want to. It’s not because Im not a doctor and cant give medical advice. Its because doing so truly wouldnt really help them. Over 427,000 people are diagnosed with Lyme disease each year, and every single one of those cases is different. Not even two of them are alike. Medication protocols must be individually tailored for each individual patient by a Lyme Literate Medical Doctor (LLMD).

Why is this the case? There are set protocols, or at least variations on a theme, for other illnesses like bronchitis and certain cancers. It would seem reasonable to assume that the same would hold true for Lyme, but it doesn’t. For starters, spirochetes (Lyme bacteria) attack people in any number of ways. A few examples: some people may have multi-system symptoms, while others may have mostly joint aches and pains; still another may have mainly psychiatric manifestations. And I’m barely scratching the surface when it comes to how variable Lyme’s effects can be.

Different symptoms are best treated with different families of antibiotics or combinations thereof. Some people do well with an anti-inflammatory that works in conjunction with antibiotics, and some do not. Some people tolerate oral antibiotics just fine, while others develop gastro-intestinal problems and do better on intravenous or intramuscular antibiotics. Again, the family of antibiotics that combats one patients symptoms might not work for another at all.

Some people react quickly to treatment; for others it takes a long time and several Herxheimer reactions before they start to notice improvement. Response time can depend on a variety of factors such as whether you have other illnesses unrelated to Lyme (for example, I also have chronic Epstein-Barr virus) and one’s individual immune function. In addition to response time, other factors come into play such as: how long did the patient go undiagnosed, does he or she have tick-borne co-infections (as I do) that can complicate treatment, and has infection crossed the blood-brain barrier. Once an LLMD gets a full picture of a patients medical history, they often must try alternating combinations of drugs before they land on what works.

And heres another wrinkle: what works well for one week or one month might not work so well the next. 

That’s another reason I can’t talk about my protocol. It’s because I haven’t had just one but many. If there were a single magic cocktail that gave me steady improvement, Id gladly share it. But there isn’t. I started on oral antibiotics for six weeks. Then I switched to intravenous antibiotics for a year. Then I went back on different oral antibiotics for another few months before getting well enough to go off medication entirely. And then, three months after that period of remission, I relapsed entirely, and had to start over with another combination of meds altogether. 

In addition to antibiotics, Ive also taken different anti-malarial medications at times to combat one of my co-infections, babesia. Ive switched up sleep medications, anti-depressants, and nutritional supplements. Ive tried various homeopathic remedies. Ive done adjunct therapies like integrative manual therapy (which involves neurofascial processing and cranial sacral therapy), neurofeedback (a non-invasive technique that helps with sleep), and traditional physical therapy. Ive done talk therapy for different periods of time at different points in my journey.

The only thing that has stayed exactly the same for over a decade is my diet: no gluten, sugar, alcohol, or caffeine. But even that has gotten slightly more lax at times. I now eat small amounts of dark chocolate, when for many years I didnt touch the stuff at all.

So yes, as Ive got better and better over the course of more than a decade, I have settled into a certain combination of treatments and therapies that have worked well for me, but that was built on the foundation of treatments I did in the past. Why, even my current protocol isnt foolproof. Just this past spring, I had a flare-up that required me to tweak my medications and supplements. Even a patient in long-term remission must change her protocol based on waxing and waning symptoms. I will continue to need to do so as needed, likely for the rest of my life or until a cure is found.

But that doesnt mean you will need to be on medication for the rest of your life or until a cure is found. Depending on the severity of your case, you may only need a short course of treatment. Let my story of eventual remission inspire you, but dont let it scare you. As long as youre in the hands of a LLMD, youll eventually figure out the treatment plan that works for you. In the meantime, please know that I understand your frustrations, fears, and physical pain, and I am cheering you on!

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].

Woman looking back

2020 Vision For Lyme Warriors

by Jennifer Crystal

Here are some things I now know for sure, things I wish I’d known, looking back on my Lyme Journey

As the saying goes, hindsight is 20/20.” Its easy for us to look back from the vantage point of experience and say, I wish Id done X,” or If only I could have known Y.” It isnt always so easy to see those options when were living our daily lives, making real-time decisions based on the information we have at the moment.

When I look back across my 20-year health journey, I recall many points of confusion, fear, and desperation. I remember the mixed messages from health professionals. I think back on the skepticism from those who were supposed to help me. I recollect the disbelief in myself, in what my body was telling me. I know so much now that I wish Id known then. And while I cant change my past, I hope I can use it to help make another patients health journey a little easier.

Here are some things I now know for sure, things I wish Id known at various crucial points of my own journey:

I really was sick.

When I first developed a rash, and then hypoglycemia, and then a debilitating flu at age 19, I was not going crazy. I was not stressed. I was not run down. I did not need to exercise more. The symptoms were not psychosomatic. I had been bitten by a tick and was sick with real physical illnesses, namely Lyme and two of its co-infections Babesia and Ehrlichia. It would be another eight years until I was properly diagnosed. That delay was so extensive in part because of the disbelief or just plain ignorance of many health professionals. Naturally, I believed them too.

If I had been accurately diagnosed promptly, my whole life would have been different.

I was bitten by a tick in 1997, and perhaps again in 2001 or 2002, but I wasnt tested for tick-borne diseases until 2005. Testing is faulty now and was even faultier then, so even if Id been tested for Lyme or co-infections, I might have gotten a false negative and been told I was well.

But I also might have gotten a true positive. If Id seen a Lyme Literate Medical Doctor (LLMD)—or even known that such a specialist existed then—they might have made a clinical diagnosis right away. I might have taken just three weeks of recommended antibiotics and been fine.

Instead, I developed chronic infections that, 20 years later, are in remission but by no means cured. I went through years of intense antibiotic therapy, including intravenous antibiotics, and I’m still on medications to this day. I dont live my life with regret, but I would regret it if you were in the same position and didnt learn from my story. If you discover a tick bite, or have symptoms of tick-borne illness, you dont have to suffer for years without treatment. You can find a good LLMD in your area and get a head start on your return to wellness.

If a loved one has symptoms and doesnt know about Lyme disease, or doesnt know how to find a doctor, offer to go through the process with them. Remember that Lyme patients are often frightened, anxious, and even neurologically impaired. They need real help when it comes to navigating their path.

Lyme Literacy improves over time.

I dont blame the many health practitioners who missed my case in 1997, because tick-borne disease wasnt on the radar then. I believe that if I presented now with the same symptoms as I did in 1997, at least one of those practitioners would think about the possibility of tick-borne disease. Thanks to media coverage, increased awareness and education efforts, and, unfortunately, the expanding number of cases, Lyme literacy has greatly improved in the last 20 years. That should give us hope for the future.

Healing is not linear.

It took me a long time to get diagnosed. Therefore it took me a long time to get well. Along the way, there were many bumps in the road, and even some large potholes. Once I was diagnosed, I figured Id take medicine and slowly get better, as one would from bronchitis or a sinus infection. But thats not how it works with tick-borne disease. It can take a while for your LLMD to figure out the best treatment protocol for you since each case is unique. You will likely experience a nasty Herxheimer reaction, which means you will feel worse before feeling better. As I discussed in my Gratitude for the Long Game post, the journey through tick-borne disease is an up and down process like a spiraling helix that ultimately stretches towards wellness.

Not everyone will get it.

Lyme patients often spend time and energy they dont have trying to convince doctors and loved ones that they really are sick. Once they are diagnosed, they may feel a sense of validation, but that doesnt mean that everyone will immediately understand what theyre going through. I still knew people who didnt believe me, those who thought my doctor was a quack, those who thought I just needed to push through it.” These people didnt understand that Lyme is complicated and comes in myriad forms; they didnt want to hear about chronic illness and asked, Arent you over that yet?”

At first, I wasted a lot of energy trying to convince these people of the truth. But eventually I realized, I dont need them to understand. The only people who really need to get it are my doctor and me. I’m focused now on the people in my life who do want to understand, the folks who have offered unconditional support. I stopped worrying about the others. I don’t need their approval.

I came to understand that many of those people were well-intentioned, but were reacting out of fear or ignorance. Some of them did come around. My own familys understanding of tick-borne illness blossomed alongside my own as they eventually read the books, watched the documentaries, attended the conferences, and accompanied me to doctors appointments. So while I have no more time to lavish on the doubters, I do hope that one day they will see the light.

No two cases are alike.

Every case of tick-borne disease is different; that means every treatment protocol is different, too. Patients write all the time to ask me what particular medication I took. But it doesnt help for me to say which medications Ive taken. Fact is, I’ve used many different combinations over time but never a single magic cocktail. That’s because what worked for me might not work for you, and vice-versa. It can be easy to think, “Well antibiotic X worked for her in five weeks, so it should work for me too.” Or, “My friend got better from Lyme in one month, so my son should, too.” Its imperative to remember that each case is unique. Be patient with yourself, or with your loved one, knowing that each body heals at its own pace.

It gets better.

When I was bedridden with exhaustion, migraines, aching joints, and insomnia, I never, ever believed I could have gotten as well as I have. I am heading into the new decade still managing my tick-borne illnesses, but I’m doing it in the context of a full and happy life. Reflecting on my past has given me gratitude, wisdom, and resilience, and those tools will help me see clearly as I step into 2020. May your vision also be clear, and your new year bright!

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].

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].

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? Email her at [email protected].

Can antibiotics help neurological symptoms? Which antibiotics did you take?

Yes. My neurological symptoms such as sleep disturbances, muscle twitches, brain fog, migraine headaches, and difficulty with word retrieval all improved after months of antibiotics. At first, many of these symptoms worsened, as the spirochetes (Lyme bacteria) burrowed deeper into my nervous system to evade the antibiotics. But eventually all my symptoms lessened to a degree where I could function again. Complementary therapies such as neurofeedback and integrative manual therapy also helped, but they couldn’t have killed the bacteria in my brain on their own. That required antibiotics.

A good Lyme Literate Medical Doctor (LLMD) will be able to to determine whether your tick-borne infections—you can get multiple infections from a single tick bite—have crossed the blood-brain barrier, and, if so, what antibiotics will be best for you. Unfortunately there is no set protocol because every Lyme case is different. Many factors enter into treatment decisions.  

Your treatment will depend among other things on how long you’ve been ill, how long you went undiagnosed, which bodily systems are affected, how you respond to treatment, and whether you have other tick-borne diseases in addition to Lyme. Length of treatment varies per patient. I wish I could give you a magic protocol, but there’s no such thing. Only an LLMD can clinically assess your particular case and provide you with an individualized care regimen.

How long did you stay on antibiotics after relapse?

I’m still on them. I’m on a much lower, maintenance-level dose, which I usually take six days a week. When I experienced a flare-up of symptoms earlier this summer, I increased the antibiotics to seven days a week, and doing so fixed the issue. More than a decade after relapse, antibiotics are still helping me.

They are also not hurting me, at least in any tangible way that my doctors can determine. We don’t know what the long-term effects might be, but I have blood work drawn every other month, and so far everything is fine. I take probiotics and stick to a gluten-free, low-sugar diet, which has staved off any yeast infections. I have not become resistant to antibiotics; when I get a sinus infection, I take an antibiotic in a different family than the one I’m on, and the infection clears up just fine.

But this is just my personal experience. I’ve met lots of chronic patients who have gone off antibiotics after relapse and have done well for awhile—maybe six months, maybe a year—and then they eventually relapse. I’ve met others who do well pulsing antibiotics—going off them for a bit, then going back on, then going off again. Still others have switched to only herbal tinctures, and some do a mix of both low-dose antibiotics and herbal tinctures. Only you and your LLMD can determine the course of action that’s best for you. It usually takes some trial and error to figure it out.

Is Lyme disease a mental health issue?

Lyme disease can affect mental health, but it is not exclusively a mental health issue. That is to say, a Lyme diagnosis is not synonymous with a diagnosis of a mental health problem such as bipolar disorder or schizophrenia. Rather, the tick-borne infection causes symptoms that affect one’s mental health. Patients can present with bipolar or schizophrenic behavior, but those behaviors may be an effect of neurological Lyme, and usually not a sign that mental illnesses are the root cause. A competent Lyme literate psychiatrist should be able to tell the difference between a primary mental health diagnosis and a secondary one caused by one or more tick-borne infections.

But be aware, Lyme can impact mental health in many ways. Patients can become irritable and angry, or experience sudden mood swings. Many Lyme patients suffer from anxiety or depression, again as secondary effects of one or more primary tick-borne infections. All of these symptoms may be signs that the central nervous system has been affected.

In summary, Lyme can cause mental health issues, but these are symptoms and usually not core mental health issues. Lyme affects patients physically, neurologically, mentally, and emotionally. It is a full-body illness that should not be too rigidly categorized into its constituent parts.

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].

Rest: The Most Important Message of My Dreams

by Jennifer Crystal

Tick-borne illness and sleep disturbances

One of the most difficult symptoms of neurological tick-borne illness is sleep disturbances. In addition to insomnia, I battled detailed, fast-paced, hallucinogenic dreams and nightmares that often left me more exhausted than I had been before I went to sleep. I wrote about the cause and meaning of these dreams in my previous post “To Sleep, Perchance to Dream”. Medication, coupled with adjunct therapies such as neurofeedback and integrative manual therapy, helped bring these crazy dreams under control, but sometimes when I’m having a Lyme flare-up or am especially tired, they manifest again.

Many of us like to interpret our dreams, and often we can find meaning directly related to external factors in our lives. For example, while I was at my sickest during my late twenties—the prime of my life—I would have dreams that it was the end of summer and I’d want to water-ski but had missed my chance because the season was over. A therapist helped me to see that this dream represented my fear of missing the “summer” of my life.

Symbols in other dreams clearly represented the way in which the illness was violating my body. I even had dreams about people in my life who had passed away, who gave me important messages of healing.

These particular dreams had deep meaning, but what I’ve come to learn is that not all dreams do. Sometimes it’s not the content of the dreams that we need to interpret, but the derivation of them. Now, when my dreams start to get detailed and wild, I realize they’re sending me a very simple message: Rest.

Here’s how I learned to look at the bigger picture of my dreams instead of analyzing their details: I realized that the content of my dreams was no longer matching up things going on in my waking life, as it once had. Earlier this year, I went through a breakup that came as a complete shock. My personal life was heading in one direction and then, suddenly, it wasn’t. I was disoriented and bereft. My waking days were marked by grief.

But I was sleeping just fine.

You would think that during this stressful time, I would have had terrible nightmares. Instead, I hardly remember my dreams during that period. I napped well. I slept soundly. I woke before my alarm every day.

I slept well because even though I was emotionally drained, I wasn’t physically tired. And because I happened to be on break from teaching, I wasn’t overwhelmed with reading and other work.

As soon as I started teaching again and returned to my hectic schedule, the crazy dreams came back. Emotionally, I was doing better; time had passed and I was making progress with my healing. But now I was tired, and that fatigue caused an uptick in my sleep disturbances. In my healthy days, (before Lyme and other tick-borne infections) the more tired I was, the better I slept. But neurological symptoms of Lyme disease disrupted that normal pattern. Now when I overdo it I sometimes get too tired to sleep or nap. Or I sleep fitfully, with non-sensical dreams and body spasms that indicate an overtaxed nervous system.

On the flip side, I’ve gone through stress-free periods when I’m very happy and doing fun activities—when you’d think I’d sleep really well—but instead, I’ve had horrible nightmares. A few summers ago I went to a lake for a week with some friends. Every day I canoed or swam. My body loved the activity but wasn’t used to the frequency of it. I was smiling but exhausted by the end of each day, and my brain responded with nightmares about fatigue.

When that happens, I know it’s time to slow down—to rest. I examine what’s going on in my waking environment, not to see how it might be reflected in my dreams, but to see what level of fatigue it’s causing. As soon as I back off my physical or neurological schedule, my sleep improves.

If you are a Lyme patient experiencing intense dreams, instead of analyzing your dreams it might be better to examine why you’re having them. The answer will probably be simpler than you think!

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].

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]