Tag Archives: Lyme disease blog

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.

Employers

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.

Dating

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_2Jennifer 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_2Jennifer 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_2Jennifer 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]