Tag Archives: lyme symptoms

Stop the Music! How to X Out the Songs and Words That Keep Playing in Your Head

by Jennifer Crystal

Don’t play that song—it’s going to get stuck in my head.”

We’ve all said this before. We’ve all heard some catchy tune that plays over and over in our heads for hours, maybe even for the day. Eventually, other thoughts and songs drown it out, the song passes to the background, and we forget it was ever an annoyance. Such songs are referred to by doctors, particularly neurologists, as ear worms. They are harmless.

But what if the song doesn’t get unstuck? What if it played for days, weeks, even a month? And what if another song started playing over it, and then another, and then another, until your brain felt like a DJ mashing tunes on repeat, ad nauseam? That’s called song iteration, and it can be a maddening symptom of neurological Lyme disease.

Songs are not the only thing that can get stuck in a Lyme patient’s mind. Words can play on repeat, too. This is called word iteration. Sometimes the words play like a narration under the songs. It’s like reading a book with four songs playing at high volume. What causes these symptoms, and what do they feel like? Most importantly, how can a Lyme sufferer get the iteration to stop?

When Lyme crosses the blood-brain barrier into the central nervous system, the bacteria, called spirochetes, burrow their way into the brain. Since Lyme is an inflammatory disease, this causes encephalitis, which is often revealed in Lyme patients on a brain scan. At the height of my illness, a SPECT scan showed inflammation on the left side of my brain. Sometimes I could actually feel the swelling. There was so much pressure in my head that I worried unrealistically if it might explode out of my skull.

Lyme invasion of the brain can cause a host of neuropsychiatric symptoms, including word loss (aphasia), brain fog, hallucinogenic nightmares, insomnia, anxiety, depression, mood swings, rage, confusion, and obsessive thoughts or obsessive compulsive behaviors—such as obsessively thinking about words or songs. To be quite clear, these obsessions are not a conscious choice of the patient. That is, the patient is not consciously obsessing over anything. Their compromised brain function is causing these intrusive, repetitive sounds and thoughts. My doctor referred to it as “the needle being stuck” on an old vinyl record.

When I first started intravenous antibiotics, my neurological symptoms actually increased. My doctor’s office had a fountain in the reception area. At first, I found the sound of the trickling water soothing. After a few months of being on IV, that sound drove me crazy. Everything I heard seemed too loud. The gentlest of noises grated on my brain, only adding to the cacophony that I couldn’t shut off. The antibiotics were chasing the spirochetes deeper into my central nervous system, causing this increase of symptoms. While this seemed counter-intuitive, my doctor assured me it meant the antibiotics were working. If I hadn’t used them, the symptoms would have worsened, with nothing to combat them.

The other reason the symptoms worsened was because I was having Jarisch-Herxheimer reactions, which means the antibiotics were killing off the spirochetes faster than my body could eliminate them. This caused a build-up of toxins in my brain, which temporarily increased swelling and worsened neurological and psychiatric symptoms.

At that point, I couldn’t sleep for weeks. I would try counting sheep and singing lullabies in my head, but soon I had numbers counting out beats to “Twinkle, Twinkle, Little Star” and “Hush Little Baby” simultaneously. During the day, any thought I might have would repeat itself at least twice. When I did sleep, I heard a narration in my dreams.

I am a writer, but I could not take the wordiness let loose in my head. I felt insane.

My doctor told me to stay the course of the intravenous antibiotics, and I’m glad I heeded that advice. Eventually, more and more spirochetes died off and were eliminated from my system, and slowly my horrible symptoms abated. The brain fog lightened. I could read again. And blissfully, the iteration quieted. It didn’t completely go away, but now I would only have one song in my head at a time, and my thoughts would not repeat. The needle had become unstuck. The record was playing again, albeit at a slow speed.

There are adjunct therapies that help detox the dead bacteria and quiet the iteration. Integrative Manual Therapy, especially cranial-sacral therapy, opens up the lymphatic drainage from my head. “Your brain gets backed up,” my practitioner sometimes still says, and his techniques release that pressure. Neurofeedback has also helped train me to work better and rest better. It’s allowed the songs and words in my head to play in the background noise rather than the forefront.

Now in remission on a low dose of oral antibiotics, a host of supplements to keep my immune system strong, and a schedule that keeps my neurological symptoms at bay, my word and song iteration is much better, though not entirely alleviated.

I still always have a song in my head. I wake up with a random one every day. Sometimes it changes throughout the day, sometimes it doesn’t. It’s always there, but I don’t really notice it; it’s like ambient noise. When I get overtired, I do start to think of thoughts repetitively and obsess over things, and that tells me it’s time to rest or maybe even change up my medications. At these points the narration of my dreams picks up, too, but a neurofeedback session usually quiets that again. “Signs of a well-trained brain,” my practitioner says calls it.

Antibiotics and therapies haven’t trained my brain to silence, but part of having a chronic illness is learning to lessen and work around certain symptoms rather than hoping for a stoppage that cannot be done. Sure, I’d love for the iteration to go away completely, and will keep working with my doctors to try to make that happen. But in the meantime, I keep humming along.


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]

What to Do When You Hit a Plateau in Treatment

By Kerry Heckman

My numbers won’t budge. Every month I go in for a blood test and every month I get an email from my doctor stating that my inflammatory markers are the same. The numbers are not so high to cause a panic, but they’re not low enough to signal any real improvement either. I’ve tried everything from meditation to medication, but nothing seems to work. Each month I pray the numbers will drop and I’m devastated when month after month they stay the same.

I’ve put in all the work; there’s been no stinting. I’ve been in treatment for three years. I’ve changed my lifestyle, my diet, and most difficult of all, my mindset. But I keep coming up short. There’s no doubt I’m better. My bedridden days are mostly in the past, and the pain that keeps me up at night (painsomnia, I call it) happens once or twice week instead of every day. Another marker of my improvement is after treatment my herxheimer reactions are greatly diminished. These are positive trends, but still I am not where I want to be. I want clinical proof that my recovery is real. I want to know unequivocally that I’m heading toward remission. I’ve  been at this dreaded plateau for months waiting to break free. I anxiously await the day when my inflammatory markers take a dramatic drop.

Your plateau may be different than mine. Maybe you, too, made big improvements in the beginning and now it’s tapering off, or maybe you’re stuck waiting for any minuscule improvement at all. Either way the lack of progress may be the hardest thing to bear.

All this was weighing heavily on me. Then one day I started thinking about actual plateaus in nature. Consider for a moment you are climbing up a mountain and reach a plateau. You’ve done the grueling work of going up the mountain and now you are walking on level ground. You are still moving forward, that hasn’t changed, but you’re not increasing your elevation. Maybe that’s what plateaus are in treatment—a leveling off that doesn’t feel like progress, because you aren’t climbing anymore. But you have achieved an incremental improvement in your recovery.

This bit of visualization changed the way I thought about my lack of headway, though  there were still some questions I needed to ask myself— questions you may need to  ask yourself as well:

Q: Have I really plateaued or is my progress just going slowly?

A: With Lyme disease the improvement can be slow . . . very slow. As they say, any progress is good progress. If you feel comfortable with your treatment protocol, you may need to practice patience and remember you are getting better. However, sometimes the progress is too slow and even if there is incremental improvement you may want talk to your doctor about exploring ways to speed up your treatment plan.

Q: Have you hit a plateau before? What helped jumpstart my healing?

A: If this has happened before, what was it that made the difference? Maybe it’s a new supplement or an increased dose of medication. Maybe your thyroid or adrenals are out of balance and need attention. Try to remember back to what helped you before and try it again. It may help to keep a journal about what you think is and isn’t working for you.

Q: Do I need to change my treatment or ride it out?

A: As I said, with Lyme getting better takes time. Ask yourself if you think your current treatment plan is sufficient to to get you better. This is a good place to use your intuition. If you feel skeptical every time you meet with your doctor that might be your body telling you something.

Q: If I plan to stay the course when will I know it’s time to adjust?

A: Give yourself a timeline—six months, nine months—for when you want to reevaluate. Verbalize your timeline to your doctor, so she or he knows what you’re thinking. Ask if there is a test that can be run at that time to compare where you were before to where you are now.

Q: Am I testing too often?

A: If you’re like me and your numbers aren’t budging, maybe it’s time to put more space between tests. This depends naturally on what is medically advisable. But I I did realize that the constant testing was causing me frequent disappointments, which weren’t good for my healing. I have since decided to go from once a month to once every other month for my bloodwork and focus on other things in the meantime.

Q: Is there something else I could do to move forward?

A: A plateau is the perfect time to reevaluate your habits. Perhaps it’s time to add more nutrients to your diet or increase detox. Have you always wanted to try a complementary therapy? Now may be the time. Or are there other options?

Q: Is this a good time for a healing pause?

A: Have no doubts, recovery from Lyme treatment is a full-time job. It seems like there’s always something else you can try, but is that the best thing for your body? This could be an indication that it’s time to take a break from all the intensity and let your body rest at the top of the mountain.

Take some time and ask yourself these questions. Get quiet and let your intuition speak. There are few doctors, medications, or therapies that can give us as much insight as our own common sense. Remember the image of the mountain and keep walking forward on the level ground of the plateau—the uphill slope may be only a few steps ahead.


kerry heckman

Opinions expressed by contributors are their own.

Kerry J. Heckman is a licensed therapist and author of the healing and wellness blog Words Heal. She was diagnosed with chronic Lyme disease in 2016.

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.

Not All Headaches Are Alike: What’s Causing Yours?

by Jennifer Crystal

Headaches are a common symptom of tick-borne illness. Now that I’m in remission, I rarely get headaches. When I do, I’ve become adept at recognizing why I have them. Knowing the nuances of my headaches helps me determine whether my pain is Lyme or babesia related—or from something else entirely—and how to treat it. In short, I now know my own head as well as I know my own body.

I trained myself to recognize gradations and causes of headaches in part as a defense against people who thought they knew my head and body better than I did. In my worst days of battling tick-borne diseases, when I would complain to an acquaintance of a smashing migraine, they might say “It could be the weather.”

I wanted to scream. A headache that severe does not result from a shift in barometric pressure. Sometimes on muggy days with impending rain, I felt fine. My head was clear. I had no brain fog or pain. Other days, it would be beautiful and sunny outside, and I felt my head might explode. Healthy people were outside playing, encouraging me to enjoy the weather—“it’ll be good for you!”—when all I really needed was to take some migraine medication and sleep.

My headaches were caused by tick-borne illnesses, not by the weather. They also weren’t stress-related (though stress could aggravate them), or caffeine withdrawal. If you are bedridden with Lyme, wishing you could just take your head off and put it on the nightstand because it hurts so much, I am here to remind you that your pain is likely caused by a bug in your brain, not by any of these more typical causes.

It’s important to talk to your Lyme Literate Medical Doctor (LLMD) and perhaps get a scan of your brain to make sure nothing else—outside of the scope of tick-borne illness—is going on. It also helps to recognize different headache symptoms, so you can be as specific as possible when talking with your doctor. In my case, headaches related to Lyme took over my whole skull with a throbbing pressure, sometimes making me feel like my brain was getting too big for my skull. Pain caused by babesia was different; that tended to be a migraine, focused on the left side of my head. It was more searing, like someone sawing into the left side of my skull. Babesia headaches caused nausea and light sensitivity, while Lyme headaches caused a more generalized, tolerable pain.

Your own headache symptoms might be different. You might be suffering from co-infections I did not have, and suffer relapsing fevers that can cause their own species of headaches. Do you tend to get migraines for a few days in a row? Are your headaches local or generalized? Do they come on during Herxheimer reactions, or when you are pulsing antibiotics? If you’re female, are your headaches specific to a certain time of the month? Figuring out these nuances can help your LLMD treat you. I recommend keeping a written log, and marking any external factors (like stress or certain foods) that you think might be worsening your symptoms.

These days when I do get a migraine, it’s usually because I’ve pushed myself way too hard neurologically or physically. If they persist, I know my babesia is flaring. But the headaches I usually get now are the “normal” headaches healthy people thought I was suffering from years ago.

I’ve learned to differentiate between these headaches, too. Weather-related headaches mean slight pressure at the base of my skull, across both sides of my head. These I can’t do anything about until the storm passes, but the pain is minimal. Stress-related headaches cause inflammation only on the left side of the base of my skull, creating a knot that I can actually feel with my hand. It helps to rub the knot or get cranial-sacral therapy and sleep. Hormonal headaches feel like a buzzing across my temples, and are relieved with over-the-counter painkillers. Dehydration headaches are a tightening on the top of my head, signaling that I need to drink electrolyte-enhanced water.

All of these headaches are bearable. Getting these typical, that is, non tick-borne disease related headaches reminds me how very, very different they are than the agonizing headaches I suffered years ago. Learn the nuances of your own headaches, talk to your LLMD about them, and don’t let anyone but your trusted medical providers tell you what the cause of pain is in your own body.


jennifer crystalOpinions 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]

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 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]

Lyme Isn’t a Choice

by Jennifer Crystal

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions.

I once spoke with an acquaintance who had struggled with the standard Lyme disease symptomsfatigue, joint aches, neuropathy—for many years. She’d been to many infectious disease specialists, rheumatologists, endocrinologists and neurologists, and no one could figure out what was wrong. I asked if she’d ever been tested for Lyme disease. She shook her head and said, “Aren’t the tests unreliable anyway?”

“Yes,” I said, “the standard tests are only 50 percent reliable. But a Lyme Literate Medical Doctor (LLMD) can do more specialized tests and make a clinical diagnosis; that is, one not based solely on standard tests alone. It would be worth a visit just to see if your symptoms might come from from tick-borne disease.”The woman shook her head.

“Nah, I don’t want to have Lyme,” she said. “I don’t want to go through everything you did and have such extensive treatment.” This denial was because she knew I’d been bedridden for several years, and that it had taken a year of intravenous antibiotics to get me into remission. She also knew that while I had regained much of my health, I still had some limitations, because my three tick-borne co-infections (Lyme, babesia and ehrlichia) were chronic.

Aghast, I gaped at her. This woman was acting as if she could pick and choose which disease she’d prefer to be diagnosed with, the same way you might walk into a grocery store and say, “I don’t really feel like making asparagus—too much preparation. I’ll have carrots instead.” Alas, patients with the misfortune to have contracted  tick-borne disease don’t have that type of freedom.

In the same way a patient with cancer can’t decide they’d rather have shingles. Such irrational thinking really isn’t thinking at all. No one wants to go through intense treatment, but we do it with the hope of getting better. We do it because the alternative is denial, which will make us sicker. If this woman had Lyme and didn’t get a proper diagnosis and treatment, her symptoms were only going to get much, much worse. Pushing a problem under a rug doesn’t make it go away. It just creates a larger problem that still must eventually be addressed.

Now, one could argue that a Lyme diagnosis is less definitive than a cancer diagnosis, because of the faulty testing. But testing is getting more and more specialized, and a good LLMD can make an expert assessment as to whether or not someone is suffering from tick-borne disease. In my case, my clinical diagnosis was corroborated by CDC-positive testing for all three of my illnesses. I was unequivocally infected with Lyme, babesia, and ehrlichia.

Much to my disbelief, I had heard other patients with equally unequivocal diagnoses denounce their diagnosis because they didn’t want to deal with having such a serious disease. I know one fellow who tested positive for Lyme and said, “I don’t want to take such strong medication or make all the lifestyle changes you’ve had to make.” So that person continued to see a Lyme-illiterate doctor who gave him the answer he wanted to hear—the wrong ones. Yes, this doctor said the man’s symptoms could be from something other than Lyme. But the doctor has yet to figure out what that “something else” is. In the meantime my friend is twisting in the wind, uninformed and suffering. His symptoms of joint pain and headaches have only gotten worse, because his tick-borne infections continue to go untreated.

Alas, getting Lyme disease is not a choice. I did not choose for a tick to bite me. I did not choose to lose my capacity to work or care for myself. I did not choose to be bedridden.

I did choose to confront my health issues head-on. I did choose to push beyond my original diagnosis of chronic Epstein Barr virus, because I knew something else was also going on. The key word here is “also”. I did have Epstein-Barr. But I also had three tick-borne diseases, and if I hadn’t found a doctor to accurately diagnose and treat them, I’d still be suffering terribly.

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions. The only way you will ever get better is to acknowledge the truth of what’s going on in your body, and do something about it. I’m sure glad I did!


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]

Chronic Lyme Disease Series: Kelly’s Story

By Kelly Gibson

Reprinted with the permission of itslyme.com
#MyLymeLife

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure from my agents to look a certain way. I quickly began having symptoms again…

As an active kid growing up in New England, I was often playing outdoors behind our house, in parks, and on the soccer field. One morning in 2003, at age 10,  I woke up at my aunt’s home in New Hampshire with a sore spot on the back of my head. I couldn’t remember bumping it, and it didn’t hurt enough to mention that day. Two days later, my head was still sore. My aunt took a look, and noticed there was a tick embedded just above my hairline. The tick was extracted with a pair of tweezers, and nothing else was done.

For the most part from age 10-14, I was a normal, healthy kid. I hardly caught colds, and besides a broken arm or visiting my RN mother at work, I was rarely in hospitals. At age 14, I attended my first “Snow Ball”, our version of prom. About 40 minutes in, I had a nosebleed, blacked out, and then subsequently began vomiting. I was then taken home by a family friend, as it appeared as though I had been drinking – I had not. Having no other symptoms in the days following, no other treatment was sought.

At age 15, in addition to dance classes three nights a week, I decided to join the track team. During three out of my first five practices, I blacked out and vomited.  I was taken to a family doctor, who diagnosed me with a “sodium deficiency” as all my blood tests came back normal, but my sodium levels were slightly on the low side. The treatment? Eat more pepperoni and ramen noodles before track.

At age 17, I had started my senior year and had taken on a lot as Peer Leaders President, Student Council Vice President, Key Club Member, a High Honors student with two AP classes, and attending dance classes four nights a week after school. In November, I had suddenly felt weak after school one day. I called my dance studio to let them know I would not be coming, and instead went home and got into bed. I did not get out of bed for one week due to exhaustion, sore throat, weakness, dizziness, and headaches. When I decided to return to school the following week, I ended up blacking out and vomiting again. I was taken to the hospital to have tests done and an IV of fluids. All of my blood tests came back normal, with the exception of a mildly positive Epstein Barr Virus test. So when the speculation came down to anorexia, depression, attention seeking or EBV… EBV it was.

I had even more symptoms added into the mix… inability to stand for more than a few minutes without fainting…being the most compromising living in New York.

I was allowed to do the majority of the remainder of my senior year working from home and by graduation I had been feeling much better and therefore decided to continue with my plans to move to NYC for college the following autumn. As fun and exciting as NYC was, my health quickly declined- nausea, vomiting, dizziness, and headaches returned along with one new symptom: joint pain.  When I was home for winter break, I was taken to doctors again for another round of testing.  This time, the word “Lyme” had been mentioned. Sure enough, my Lyme disease test came back positive and I was immediately put on two months of Doxycycline. I began to feel much better, and more like my normal self. So much so, that I took it to the extreme and decided it would be wise to enter myself into the New York party scene. I did this for six months, and have never fully recovered.

By the time I saw Chronic Lyme Disease Researcher + Specialist, Dr. Kenneth B. Liegner in 2012, I had even more symptoms added into the mix: tremors, brain fog, muscle twitching, depression, and the inability to stand for more than a few minutes without fainting. The latter being the most compromising living in New York.  After an additional positive Lyme test, as well as positive tests for Babesiosis and arthritis, Dr. Liegner started me on continuous oral antibiotics (I haven’t stopped taking them since), and a few months later an 8-week stint of IV Rocephin. Both treatments had me feeling back to (almost) normal. I then chose another industry which was detrimental to my health: modeling.

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure to look a certain way. I quickly began having symptoms again but was determined and thus continued to work. After two years, I was back needing to receive IV’s again & began seeing a new Lyme specialist closer to my parent’s home. Dr. Richard J. Dubocq did everything in his power to allow me to continue my modeling dreams. He understood I was going to do it anyway, so he might as well help me to accomplish it! He began to not only treat me with oral antibiotics but also with other medications to help with the symptoms I was experiencing. I began to feel better again, but with the physicality of working both in NY and Europe, I need another boost of IV antibiotics and another six-month rest before returning to modeling again.

I lasted 8 more months. During the February fashion week of 2015, my neuropathic symptoms got so bad that by the end of six days of shows, I had trouble walking, difficulty finding words, insomnia, minimal short term memory, and had a droop on one side of my face. This led me to once again, return home for rest and treatment. I finally decided enough was enough, and quit modeling for good. Six months later, I felt well enough on my oral antibiotics to begin working again. I took a part time job as a front desk associate at a spa near my apartment. As I began to improve and take on more, I had the ability to move up throught the company. Two years later I am the spa director for the location working 45-50 hours a week, and feel well enough to take a couple dance and fitness classes per month.

I still have symptoms, but am able to manage them and live a pretty full life, even though it is not the life I intended to have. After having Chronic Lyme Disease for fourteen years, and only being treated with antibiotics for the last seven, I will most likely never be “normal” again, but I am proud of myself and so thankful to my family, friends, and doctors for getting me this far.

Kelly’s Symptom Breakdown:

First onset Lyme symptoms: Dizziness, fatigue, severe headaches, sore throat, vomiting, blackouts.

Recall tick bite/bullseye rash: yes; not that I know of.

Diagnosis before Lyme disease: Sodium Deficiency, Epstein Barr Virus

Chronic Lyme disease symptoms: Headaches, extreme fatigue, facial paralysis, tingling sensations, stuff neck, swollen glands, sore throat, twitching of muscles, eye floaters, extreme menstrual symptoms, buzzing in ears, nausea, vomiting, night sweats, costochondritis, shortness of breath, mood swings, depression, anxiety, numbness in body, stabbing sensations in legs, weakness, tremors, difficulty walking, difficult finding words and forming sentences, forgetfulness, memory loss, and rashes.

Lyme disease & co-infections diagnosed by: Persistent symptoms, Western Blot blood test.

Kelly is still being treated with oral antibiotics for Chronic Lyme, Babesiosis, and Bartonella, but hopes to soon be able to decrease antibiotics and supplement with herbal and homeopathic remedies.

Fighting ‘Fight or Flight’

by Jennifer Crystal

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

 

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

Sounds like a relaxing scene, right?

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

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

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

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

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

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

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

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

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


jennifer-crystalOpinions expressed by contributors are their own.

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

 

 

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Chronic Fatigue or Feeling Tired?

by Kerry Heckman
#MyLymeLife

There is a difference between chronic fatigue and feeling tired. Have you developed chronic fatigue as a result of your Lyme disease?

 

I remember the moment when my husband said, “I get it,” and I knew he did. It was the time he’d developed an acute bladder infection and was stricken with a high fever. I had to go to work, so he took himself to urgent care. Later that evening he said, “I think I was putting on a show at the doctor’s office, I probably didn’t even seem sick. Then, as soon as I got home I completely crashed. I haven’t moved from this chair since.” That was it. The feeling I’d been trying to describe to him for years. It’s like using every last bit of adrenaline to get through a show, only to immediately collapse in the wings afterward. He could finally understand what I go through on a daily basis.

Everyone can relate to what it feels like to be tired. There are a million things to do and never enough time in the day. We stay up too late, clinging to the few hours we’re not working, and then slog through the morning fueled by cups of coffee.

Chronic fatigue—a common symptom of Lyme—is completely different. Chronic fatigue is a medical diagnosis and cannot be healed by a good night’s sleep and a day without commitments. It is there when you wake up, there with you all day long, and there when you fall asleep. Chronic fatigue presents differently in every person. Here are a few perspectives from others in the Lyme community:

“I feel like I am walking around with weights attached to my body.”
“The fatigue is like every little thing that you need to do, like say fold laundry, that would take a healthy person a half hour, takes a person with Lyme hours. We have to rest in between. I actually spend more time resting up to do something, than actually getting it done.
“Not quite up to starting the big game, but the big game is every day.”
“Feeling like you have been hit by a train or have a terrible case of the flu and are incredibly weak and tired, and that you can only get off the couch or out of bed with a huge effort. It is hard to think straight and nearly impossible to get anything done.
“It feels like you just finished running a marathon that you hadn’t trained for…and at the end of the marathon, you also got the flu and also got struck by lightning, which caused everything in your body to shut down.”

My available energy comes and goes in cycles, and sometimes it’s difficult to know how much energy I will have to spare. This is especially true in social situations, which seem to be the most draining. One day, I had the energy to go out with friends. I felt great, better than I had in months. We got Mexican food and talked for hours. We were joking and laughing so much, I almost forgot about my illness. I thought, I must be getting better, I haven’t had this much stamina in months. When I went to sleep my spirits were high.

Then I woke up and I couldn’t get out of bed for two days.

This is the difference between chronic fatigue tired and just being tired. There is a limit to what a person can do, and when they overdo it, it takes days to get the energy back just to take a shower. This was the feeling I found so hard to describe to my husband, which he finally understood when he got a serious infection.

Some Lyme patients are wheelchair bound, or spend months or years confined to a bed. I am fortunate in that, as long as I don’t run myself into the ground, my bouts of fatigue last only two to three days. I can’t imagine what it is like to go days on end and never feel the energy to get out of bed, but that’s the harsh reality for many Lyme patients.

It’s hurtful and invalidating when people compare chronic fatigue to just being tired. Lyme patients’ fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.

Next time, when you’re discussing your chronic fatigue and someone says, “I’m tired, too,” politely remind them it may sound like the same thing, but there is absolutely no comparison.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

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

How to Be Your Own Health Detective

by Kerry J. Heckman
#MyLymeLife

Getting an accurate Lyme diagnosis can take years. With poor diagnostic tools and limited support patients are often forced to be their own health detectives. Here are six tips to help in the process.

 

The test result email popped into my inbox. I was driving and couldn’t look until I was stopped at a red light. This was it. The final clue in a seemingly never ending mystery. The diagnosis I’d been waiting almost two years to get. Two years of crippling health anxiety, and a slow steady decline, all resting on one simple blood test.

Many people who are eventually diagnosed with Lyme disease spent years leading up to it searching for the right diagnosis. Because of poor diagnostic tools, we’ve had to learn to be our own health detectives.

My journey started almost three years ago.I’d been ill for many years prior, but doctors assumed all my symptoms related to an autoimmune condition, Grave’s disease. Then, in May of 2014, my right leg started to feel “heavy” and was aching. I looked down and noticed it had blown up like a balloon. I ended up in the ER. At first, the doctors took it seriously, because they thought it was a blood clot. After the test came back negative, I was quickly discharged with no answers.

I went to my primary care doctor and she told me to wait a month and see how I felt. I immediately found a new doctor and he told me that unless the swelling was more than two inches different from the other leg I should simply ignore it. Ignore it? I was just supposed to walk around with a swollen leg for the rest of my life? No tests were ordered, no follow-up appointments were scheduled, so I moved on to another doctor, and another, and another.

Like a detective on an important case, looking up symptoms on the internet became my full-time job. I’d get lost down a Google rabbit hole for hours on end. My husband would practically have to pry my fingers from the keyboard. Every time I discovered a new lead I would follow it as far as it would take me, usually to another annoyed doctor, who’d send me away with an exasperated look. This continued for six months. Then I developed a new strange symptom a stabbing pain in my side. Again I went to the emergency room. This time I was admitted after a MRI revealed what looked to be an infection in my spine. It took the doctors five days to determine the infection wasn’t spreading rapidly enough to cause immediate concern. I was discharged again with nothing but another piece of paper with the diagnosis left blank.

From there I was passed between a rheumatologist and infectious disease doctor for another six months. When I went to see the rheumatologist, he said it was an infection; when I went to see the infectious disease doctor he said it was rheumatological.

But I didn’t give up. I found an integrative medicine doctor who was willing to think outside the box. She ran some preliminary tests for Lyme disease, and when they came back suspect, she referred me to a Lyme-literate medical doctor.

Those two years were some of the most difficult in my life, but I had to stay on the case. Here’s some advice on how to keep moving forward even when the puzzle seems impossible to solve.

How to Be Your Own Health Detective:

  1. Start thinking like one

From the very first symptom, everything is a clue. Keep an ongoing list of every symptom you experience. Even if it doesn’t seem like an important one, write it down. Keep a folder of all your test results. Compare and contrast the results over time. You never know what will end up being the missing link.

  1. Ask the right questions

Make a list of all your doctors. When a question pops into your mind, write it down under the heading of the best doctor to answer that question. By the time of your next appointment, you will a have a thoughtful list of questions to ask.

  1. Be confident in your symptoms

Before I had a diagnosis, I found that many of my symptoms were minimized or ignored by doctors. Some of these symptoms seemed small on the surface, but ended up being the most important clues. Don’t allow a doctor to tell you a symptom isn’t real,  is all in your head.

  1. Set boundaries when using the internet

Google and Internet forums are a good tool for health detectives. The problem is it can become an enormous waste of time and energy. Some good boundaries to set are to spend no more than 15 minutes a day researching symptoms or asking questions on forums. Make sure you verify everything you read with a trusted doctor; there is a lot of dangerous misinformation on the internet.

  1. Talk about your illness

When you talk about your symptoms with other people, sometimes they have good input. For example, back when my leg first became swollen, a friend of my mother suspected an infection. This was something none of the doctors had mentioned, but I kept it the thought in the back of my mind. It turned out she was right.

  1. Never, ever, ever give up

The worst thing you can do for your health is to give up. Sure, you’ll hit brick walls, but you’ll have to learn to break through them. Nothing is more important than your health, so you have to keep exploring until you feel satisfied with your care. If you can afford it, get a second opinion (and a third, and a fourth). Determine how far it is reasonable for you to travel and how much it is reasonable for you to pay, and then go to the best doctor you can find who fits within those parameters.

I was stopped by that red light for just long enough to open the email. I was scared to read it. What if it’s just another negative test to add to the list? But it was “positive.” After two long years of no diagnosis and countless doctors, I had my answer. I had Lyme disease. When you receive a diagnosis it can be a strange mixed moment of emotions. You are devastated to have the illness naturally, but even more so you are grateful to finally know what it is. My detective work paid off.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

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

Living with Lyme Brain

by Jennifer Crystal

Short-term memory loss, confusion, brain fog, and word repetition are just a few symptoms of Lyme brain experienced by many Lyme patients. How has Lyme brain affected you?

 

I was recently talking on the phone with a friend who is expecting a baby. “I’m so sorry I didn’t call you back earlier,” she said. “I can’t remember anything these days. It must be ‘pregnancy brain’!”

I knew what she meant. I’ve experienced “Lyme brain,” and the symptoms are similar. Throughout my 20-year battle with Lyme and other tick-borne illnesses—eight of which were undiagnosed and untreated—I have wrestled with shortterm memory loss, confusion, brain fog, word repetition, difficulty retrieving vocabulary, and a tendency to mix up words. Other neurological symptoms have included insomnia, hallucinogenic nightmares, migraines, burning extremities and mini seizures.

It’s hard to explain the neurological component of Lyme disease to people who haven’t experienced it. Most people know Lyme causes joint pain, and it does. But when it goes undiagnosed for too long, the bacteria can replicate and cross the blood-brain barrier, invading the central nervous system. A scan of my brain showed that the tickborne parasite babesia was preventing me from getting oxygen to the left side of my brain. The scan also showed lesions caused by Lyme.

But that scan was done years after my initial tick bite, years after I’d first noticed that my hands trembled when I tried to apply eyeliner, years after doctors had written off my migraines as “altitude sickness” or “stress.”

blog_JC_lyme brain_1

Unfortunately, my story is all too common. The neurological symptoms of Lyme disease are some of the most confused with other illnesses. Besides the brush-off diagnoses I received, patients are often misdiagnosed with multiple sclerosis, Parkinson’s, and/or mental illness. Without proper diagnosis, neurological Lyme disease can lead to paralysis, schizophrenia and even death.

I was one of the lucky ones. My sleep disturbances were unbearable at times, but my day time neurological troubles never got worse than brain fog and word loss. So what did that actually feel like? Imagine molasses seeping through your brain, pouring into all the crevices until your brain feels so full that you wonder if it will explode right out of your skull. Imagine that thick substance sticking to the synapses of your brain, dulling your thoughts, slowing your ability to put those thoughts into words.

It became impossible to read or watch TV. Just skimming the opening paragraph of an article left me confused and frustrated. Sometimes I’d be telling a story to my family—something as simple as, “I ran into an old friend at the pharmacy today”—and I’d stop mid-sentence and ask, “What was I talking about?” I had no memory of what I’d just said or what point I was trying to make. I also sometimes mixed up the syntax such as, “I ran into a friend old at the pharmacy today.”

Other times, I couldn’t come up with basic words. While telling my family that story I might say, “I ran into an old friend at the…at the…at the blank today.” I knew that “today” came after the word I was trying to say, but I couldn’t fill in the blank. Usually whomever I was speaking with could fill it in for me, but I was nervous about that happening in public. I’d be at the pharmacy and suddenly not be able to come up with my zip code when prompted by the pharmacist. Sometimes the word or number would come eventually, as if my brain had done a Google search. Other times I would just try to laugh it off, saying something like, “Wow, I must be really tired today!” I wished I had the more obvious excuse of “pregnancy brain.”

As a writer, I have always been exacting in my vocabulary. Losing the ability to come up with precisely the right word was humiliating. Words are my currency, and I was broke.

Luckily, the antibiotics started beating out the spirochetes in my brain, and slowly things improved. Soon I could read an entire magazine, as long as I stopped in between articles to sit quietly and let my brain rest. Eventually I could type multi-paragraph emails. The word repetition fortunately decreased . I worked my way up to attending graduate school, writing papers and essays —thinking again at a high level.

blog_JC_lyme brain_2

These days, I still wrestle with some neurological symptoms especially when I’m tired. Recently I was writing a chapter of my next book and called my mom to say, “I’m thinking of a word that sounds like ‘synonymously’ and means two things happening at the same time.”

“Simultaneously,” she quickly said. I smiled, filled in the blank, and continued writing.

While working on my book, I’ve been doing some prompts with a writing group to help generate material. Recently we wrote about things we’ve lost and found. “I’m writing about losing my mind,” I told my mother.

“How do you know you’ve found it?” she joked.

I know because I can write about my experiences with some distance, using exactly the words I want. I know because I can teach. I know because I can read student essays and newspaper articles. I know because I can read entire books—albeit slowly—and I’ve even written one, too. And in the rare event that  I can’t think of a word, I know I can always call my mother.


jennifer-crystalOpinions expressed by contributors are their own.

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

Night Sweats & Lyme

by Anthony Brandt
#MyLymeLife

The real estate ads never mentioned the deer. Thanks to a very smelly mix of chemicals we can still grow hosta, their favorite food, but the chemicals have to go on after every rain, and we now buy shrubs and other perennials according to whether the deer like them or not. But you can’t, in the end, spray everything. And the deer like our yard regardless. We drive up our driveway at night sometimes and there they stand, in the back yard by the hedge, four or five of them, just hanging out, staring in that startled deerly way—what are you doing here?—and we get out of the car and yell at them, or growl like very angry wolves, and they climb through the hedge and disappear.

But they have left ticks behind, you can be sure of that. I read somewhere that the average deer has something like 400 deer ticks living on each ear. Each ear? One of them is bound to get you.

I do my own gardening and one got me some years ago. I noticed what seemed to be a bite on my right knee but no bull’s-eye rash, which is supposed to be the marker for Lyme disease, and no tick either. So I ignored it. Big mistake. After a couple of days a redness did appear and, because Lyme disease is well-known in the Hamptons, on eastern Long Island, where we live, I made an appointment with my dermatologist, who I knew to be an expert on Lyme disease, and he explained that he couldn’t be sure, but it was best to be safe. This was a man who had saved my life by identifying a mole on my arm as a melanoma and taking if off at a stage where it was minimally dangerous. So two days later I was on doxycycline.

Too late. One day later I was sick in bed, feeling achy and stiff and weak, not interested in eating, like having the flu without the sneezing and coughing and runny nose. Then I went to sleep.

Do you know what night sweats are? I didn’t, but now I do. You wake up soaking wet. SOAKING. It’s as if you just stepped out of the ocean, you are wet head to toe, and the bed around you is equally wet and you wonder whether there’s a hole in the roof and it just rained on you. And this happens night after night. You think, this is what malaria must be like. Yet you don’t feel feverish, although you must be, it’s not like chills and fever. It is the thing I remember best about the whole experience.

In the end, the antibiotic did its job. I got better, and there has been no recurrence. I count myself lucky. I know people out here in the Hamptons who have had Lyme disease four or five times, and a few who have had it so severely that the damage it did is more or less permanent. On nearby Shelter Island, where deer are especially abundant, a large proportion of the population—I don’t have exact figures—have had it more than once. I’ve been bitten by ticks since, but I’m vigilant. If you find the tick on your body you go to any local doctor and get a prophylactic dose of doxycycline and take it right away.

We have programs out here now to deal with the deer. Some local towns hire hunting professionals to thin the population. The deer lovers, and there are many, object to the hunters and set up chemical rubs on posts where the deer come to feed on food laid down to attract them, and the deer rub against the posts. Some communities have expensive deer sterilization programs. Deer are a definite issue in the Hamptons.

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None of these programs, unfortunately, works very well. Nor are the antibiotics foolproof. If you live in an area where Lyme disease is not that common, your doctor may not be well versed in the ways of the disease and be reluctant to treat it. Some doctors rely on blood tests to see if it is Lyme disease, but they are often inaccurate. When the antibiotics are used too late, the disease can become chronic, and the symptoms persist for months or even years. I know of one person who spent six months in a hospital on an antibiotic drip before being cured.  I know of another who, after multiple infections, has never been cured.

My own solution would be to return mountain lions to the area. It sounds drastic, and it would be hard on the local cats and dogs, but deer no longer have natural predators in the East, and the population has soared. People are amazed to discover that there are more deer in North America today–more than 24 million–than there were in 1620, when the Pilgrims arrived. They are responsible for hundreds of deaths in automobile accidents every year; indeed, driving at night out here has become increasingly dangerous. My wife and I have had deer run in front of our car, bang into it from the side, and otherwise scare the hell out of us.

And they carry around an enormous number of ticks, which not only give people Lyme disease but Rocky Mountain spotted fever, babesiosis, and twelve other diseases. Mountain lions are not out of the question, to my mind.

But then I’ve had night sweats. I’ve worried about dealing with severe joint pain the rest of my life, which is one thing Lyme disease can cause. Before Lyme was first diagnosed, indeed, there used to be something called Montauk knee, a chronic pain in the knees that affected residents of Montauk in particular, where the deer population has always been high. Where there are deer, there are ticks. Once, on Martha’s Vineyard, my wife and I took a walk into the dunes there and came out with 20 or 30 ticks apiece crawling up our legs. We stripped to our undies on the spot to pick them off our bodies. My dermatologist talks about ticks as walking sewers. I sometimes think, suppose they had wings, like mosquitoes?

I garden on summer weekends, and then I check myself for ticks. I don’t want to have Lyme disease ever again. I took one off my knee–they seem to like my knees–this last June, and then took the prophylactic dose of doxycycline. It worked, I didn’t get Lyme disease. But I know I’ll get bitten again. I read somewhere that scientists have run experiments with ticks where they’ve placed them on blades of grass and the ticks have spent as much as a year on them without moving, waiting for an animal to come along and become their host. I have personally seen them in just that situation, one half of them clinging to the grass, the other half grasping the air, waiting for me, or some other host to come along.

Mountain lions. Coyotes. Whatever it takes. I should be able to walk across my own back yard without being afraid of getting deathly ill, don’t you think? Is that too much to ask?


Opinions expressed by contributors are their own.

anthony-brandtAnthony Brandt is the editor of National Geographic’s Adventure Travel series of books and the author of articles in numerous national magazines including The Atlantic, GQ, and Esquire.

Stabilizing Blood Sugar During a Season of Sweets

by Jennifer Crystal

Hypoglycemia and Lyme Disease

 

The first symptom of tick-borne illness that I experienced was one I’d never heard of: hypoglycemia. I was working as a summer camp counselor in the woods of Maine and had just finished a morning teaching water sports in the hot sun. As I walked into the dining hall for lunch, I suddenly felt the room was spinning. The chatting campers morphed into a blur of color. I sensed the blood draining from my face and grabbed onto a bench before my legs gave out. Friends held my arms and got me to an adjacent counselors’ room, where I lay down on a couch. “You must be dehydrated,” one said.

I shook my head and said,  “I’ve been drinking water all morning.” Despite lying down, I still felt like I might faint. My palms were sweaty and my heart raced. One counselor put her hand on my foot as a gesture of reassurance. I panicked. “I can’t feel your hand,” I cried as my whole body started to shake. “My feet are numb!”

What I could feel, however, was a plastic spoon that had suddenly been placed in my mouth. I tasted the sweet syrup of blueberry pie. “Eat this,” I heard the camp nurse say. Dutifully, I swallowed spoonful after spoonful. Within minutes, my body calmed down. Sensation returned to my extremities. I stopped sweating, and my heart stopped racing. My cheeks flushed, and the blurry faces came back into view. The nurse held my hand and said soothingly, “You had a low blood sugar reaction. You need to get checked for diabetes.”

Tests showed that I was not diabetic, but I was hypoglycemic, a condition I’d never heard of before. I learned that after a meal is consumed, food breaks down into glucose, releasing insulin from the pancreas to give a person energy. For most people, when their supply of energy is low, glucagon compensates and sends stored sugar from the liver to the bloodstream. For people with hypoglycemia, this exchange does not always happen, causing blood sugar levels to drop. A dangerously low dip can produce all of the symptoms I have just described, as well as extreme hunger, nausea, headache, weakness, fatigue, lack of coordination, irritability, and loss of consciousness.[1]

My doctor at the time didn’t seem concerned with why I had suddenly developed this condition. He just told me to keep snacks on hand. It wasn’t until eight years later, when a Lyme literate physician put together all the symptoms I’d experienced since that first episode—including frequent blood sugar crashes, flu-like aches and fatigue, fevers, migraines, hallucinogenic nightmares, insomnia, and burning extremities—that I learned hypoglycemia can be caused by the tick-borne illness babesia, which my body had been harboring all that time.

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Many Lyme and babesia patients experience hypoglycemia and also find themselves treated by doctors who aren’t familiar with the connections. As a result, hypoglycemics, like myself, also struggle with weight management, and with the frustration and embarrassment of having to interrupt social interactions or work meetings to eat, often at inopportune times.

Over the years, I’ve learned a few tricks for minimizing blood sugar crashes:

  • Avoid sugar—This may seem counterintuitive to the remedy given by my camp nurse—and to the fact that you are trying to raise blood sugar—but what I described was an acute reaction. If your blood sugar crashes like that, then, yes, sugar will help you boost it. The problem, though, is that it may boost it too high, and then you’ll just crash again later. To avoid these peaks and valleys, it’s best to eliminate sugary foods altogether. I eat natural sugars like honey, fruit, and agave nectar, but even those I consume in small quantities. I never eat sugary foods on their own.
  • Familiarize yourself with the glycemic index—The International GI Database explains: “The glycemic index is a ranking of carbohydrates on a scale of 0 to 100 to the extent to which they raise blood sugar levels after eating. Foods with a high GI are those which are rapidly digested and absorbed and result in marked fluctuations in blood sugar levels.”[2] Obviously, straight up sugar has a high GI; glucose comes in at 96. But you’d be surprised what other seemingly healthy foods rank high on the GI list: bananas are a 70, while certain apples are only a 28. Bananas still have health benefits, but an apple will keep your blood sugar stable for longer.
  • Avoid processed foods—The more a food is processed, the greater chance it has added sugar. Bread, crackers, and cookies, even if they’re gluten and sugar-free, contain lots of simple carbohydrates that will quickly turn into sugar in your body. Even eating all-natural applesauce will raise your blood sugar more than a whole apple. Keep it simple!
  • Eat a good mix of protein and carbs—Protein gives you sustained energy, while carbohydrates give you a quicker rise; I find my body needs both to function well. If I don’t eat protein, my blood sugar will crash shortly after a meal, but if I don’t eat carbs, I feel nauseous. Having a mix of both at every meal and snack helps me stay stable throughout the day.
  • Focus on complex carbohydrates—Whole grains such as quinoa and rice will keep your blood sugar steadier—and keep you fuller longer—than simple carbohydrates. I do eat sandwiches on gluten-free bread, but not every day. Instead I try to make lunches of salad with turkey or chicken, and corn chips; or quinoa with stir-fried vegetables and tofu; or brown rice with chicken.
  • Eat every few hours—Have a well-balanced breakfast, lunch, and dinner, but have a morning and an afternoon snack, too. If you’re worried about calories, these meals and snacks don’t need to be big—just enough to keep your energy, and your blood sugar, steady. Your body needs good, healthy calories to get better!
  • Carry snacks—The advice the doctor gave me long ago was sound. I always carry a protein bar and/or some nuts or fruit in my purse. Always. You never know when your blood sugar is going to drop, and you don’t want to have to make a scene in line at the post office—where there is no food.
  • Eat before you’re hungry—If you wait until you’re starving, your blood sugar is already low, and you’re going to need to eat more to bring it up. Then you’ll probably raise it too high, putting you at risk for a crash.
  • Look for sugar everywhere—Sugar shows up in the strangest places, like salad dressing, marinade, spaghetti sauce and soup. Always check labels!
  • Eat something with protein before bed—It’s not good to go to sleep on a full stomach, but a snack such as a piece of cheese or a small protein shake will keep your blood sugar steadier during the night, decreasing those 3:00 a.m. stumbles to the kitchen for orange juice.

Perhaps most importantly, keep the big picture in mind. You’re going to have some sugar. I eat a piece of dark chocolate every day. That’s made some people say, “See, you do eat sugar.” But in the grand scheme of things, I eat a very small amount; that one treat contains four grams of sugar. I choose it as my cheat, but I avoid sugar in other products, so that my overall daily intake is low. Will I have brownies sweetened with agave nectar at the holidays? You bet. I’ll probably have two. But the next week, I’ll be back to apples and nuts, salad and rice. It’s okay to indulge to a degree during this sweets-filled period between Halloween and New Year’s. But if you keep these general tips in mind, you should be in good shape.

[1] diabetes.org

[2] glycemicindex.com


Opinions expressed by contributors are their own.

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

The Bigger Picture By Jennifer Crystal

The Bigger Picture: A Two-Part Series on Taking Care of Our Overall Health Within the Context of Chronic Lyme

When you have a serious case of tick borne disease, it’s natural to get completely immersed in the world of that illness. You are reminded of your aches, pains, and limitations the moment you wake up (provided you ever got to sleep; some patients get the reminder twenty-four hours a day). At the most critical lows, it’s impossible to think of anything else. When it’s a fight to lift your head off the pillow, take a shower, or swallow medication, you have no energy to consider movies or books or current events or what might be happening at work.

Or what else might be happening in your body.

Tick borne diseases are so all-encompassing that they can seemingly explain every symptom we feel. And many, if not all, of these symptoms are Lyme related. Lyme is called The Great Imitator because it manifests in such a variety of ways that it is often mistaken for other syndromes such as Chronic Fatigue, Rheumatoid Arthritis, Lupus, and Multiple Sclerosis. Once an accurate tick borne disease diagnosis is made, patients know that their joint swelling is a result of spirochetes; that their hypoglycemia and nightsweats are caused by babesia; and that their stretch marks and spiked fevers are due to bartonella.

The problem is when our typical symptoms start to present atypically. Then we have to wonder, is this just Lyme doing something new, or is it something else entirely? If a Lyme patient usually has achiness in his elbows, sudden pain in his knee could easily be explained away by spirochetes moving to that joint. If a Lyme patient has daily headaches, and one day that headache becomes a migraine, she’s going to assume that the increased pain is caused by a flare up of her Lyme.

Tick borne disease patients generally know their bodies, and their symptoms, so well that we can self-diagnose when our symptoms get a little wonky. We keep fastidious logs of our ailments, and if we can’t remember if we’ve experienced something before, we can go back and check. Often, we have. Often, new or increased aches and pains are associated with our Lyme, and we can’t worry over every single one, or we’d make ourselves crazier than we already feel.

The question becomes, when is something not Lyme? With a disease that affects virtually every system of the body, from the heart to the gastrointestinal tract to the central nervous system, is there any symptom that doesn’t fall under Lyme?

The answer is yes.

Not everything is Lyme related. It’s hard to believe that, or even consider it, when Lyme and its symptoms have you pinned to the bed. But falling into that kind of tunnel vision can be more dangerous than Lyme itself.

I’m reminded of a commercial that ran a few years back, in which a women had tragically just lost her sister. The women tells us that the sister, who had a family history of breast cancer, did monthly self breast exams and got regular mammograms. How then, the viewer wonders, could this woman have died of breast cancer?

She didn’t. She had heart disease.

When we are totally focused on our main health event, we can miss a silent circus going on under the surface. Because Lyme patients are so sick, it’s easy for us to forego routine procedures such as mammograms, prostate exams, and dental cleanings. I’ve certainly said, “Oh, I’ll deal with that when I’m healthier” or “Eh, that’s just a checkup; it can wait. I have to focus on my acute illness.”

The problem is, unless Lyme is diagnosed and treated right away, it rarely is acute. When we suffer from long term Lyme or any other chronic illness, we can’t let the rest of our health fall by the wayside. We need our foundational health more than ever, so that we can combat our chronic illnesses from the strongest possible baseline. And that means getting annual checkups, going in for dental cleanings, and calling the doctor when new, atypical symptoms pop up and persist. It means taking care of “smaller” health problems when they arise.

This is a case of do as I say, not as I do (or did). When I was in college, my dentist recommended I get my wisdom teeth removed. “They’re not impacted,” he said, “so it would just be a preventative measure.” He cautioned that if I didn’t get them out, the teeth might give me trouble down the line. At the time, I was facing two other surgeries and dealing with the symptoms of undiagnosed Lyme; who had time to think about “down the line”?

Fifteen years down the line, I got pericornitis. One wisdom tooth got infected, and another isn’t far behind. This past February, the teeth had to come out. The surgery was no longer elective. Suddenly I was faced with scary questions: how would the extraction affect my Lyme, and vice-versa? Read on next week for the answers, and for more on the relationship between Lyme and other health issues.

10 Top Myths About Lyme Disease

Staycationing By Jennifer Crystal

During last winter’s Snowpocalyse, posters advertising trips to Florida started appearing around Boston. As I trudged through ten feet of snow in big boots, I caught glimpses of people in bathing suits and flip flops lounging by a swimming pool. The advertisements made me cry. Not just because my city was under weather attack, but because I knew I couldn’t take a vacation South, no matter how badly I wanted to.

The same is true for many people, of course. Financial limitations, work obligations and other commitments prevent even the healthiest people from just jetting off on a whim. For Lymies and patients with other debilitating illnesses, the limitation is more physical. Tick borne illness can prohibit getting out of bed, let alone getting on a plane.

As I mentioned in a summertime post, the very idea of travel can be overwhelming for Lymies. No one likes to go anywhere when they’re sick. Imagine the worst flu you’ve ever had. If someone offered you a trip to the Carribbean while you had that flu, would you be able to go? Even if you managed to drag yourself onto the plane, would you enjoy the trip? For those of us managing what feels like an eternal flu, the fatigue of long flights or car rides, coupled with travel schedules that break up our usual routine and the literal baggage we carry—suitcases full of specialty foods and medicines, sometimes including intravenous supplies—can turn a vacation into an exhausting chore.

Travel is expensive. It uses up physical resources Lymies don’t have (returning to the idea of the spoons post, traveling from, say, Boston to Florida would cost me weeks’ worth of spoons). Lymies often also get roadblocked by guilt over the monetary cost of a vacation. Since many people struggling with Lyme can’t work or support themselves fully, they don’t feel right about taking time “off”, or about spending money to do so.

The thing is, everyone deserves a break once in awhile. Nay, we need it. Healthy people with full time jobs have (in most cases) weekends off or a week or two of scheduled vacation a year, for the express purpose of rejuvenation. The problem with chronic tick borne illness is that it is, well, chronic. You can’t ever take a break from it. When I was bedridden and suffering daily with migraines, joint aches, insomnia, and brain fog, I would have given anything to get a one day break from it all. Even a one hour break from it all. Sometimes I wished I could just take my pounding head off and rest it on the nightstand for awhile. Now that I’m in remission, I’m grateful to have more breaks than not when it comes to Lyme symptoms, but I’m ever mindful of their ability to flare back up. I know that a big trip is a surefire way to make that happen.

So how can Lymies get the break they need?

I invite you on the following “staycation”:

• Find the sunniest spot in your room or home. Pull a comfortable chair—preferably a recliner, if you have one—into that spot or in front of that window. Stretching out in that chair is almost like sitting in a chaise lounge, and you only have to move a few feet to do it. You can even line the chair with a beach towel, for authenticity. (Lymies who are on sun-sensitive medication should be sure to wear a hat and sunscreen, or tilt their chairs away from the sun).

• Put on some sunglasses. Whether you’re taking sun-sensitive medication or not, this is a vacation, and you deserve to look like a movie star as you sit “pool side”.

• Fill a rubber basin with warm water and some soothing bath salts, and place it at the foot of your recliner. Et voilà! Your feet are in the ocean. Bonus: no jellyfish!

• Fill a glass with seltzer and 100% fruit juice, and garnish it with a slice of fresh fruit or even a little umbrella (available at many supermarkets and party supply stores). You may not be able to have a daquiri (or even a virgin daquiri, because of the sugar), but you can certainly have a vacation-style drink in hand!

• If you are able to listen to music, put on something light or classical. When my brain was in overdrive, I found that soft instrumental music—with no lyrics—was good in small doses. You might even download a recording of ocean waves.

• Get a couple of light entertainment magazines on whatever interests you, be it celebrity gossip or sports. For a long time I couldn’t read at all due to brain fog and confusion, but when those symptoms started to go away, I started with small amounts of very light reading, such as one paragraph of a People magazine story. At first I felt like, if I can read, it should be a newspaper or something meaningful. But that type of material was too hard for me to comprehend at first, and left me feeling discouraged. Work your way up through lighter material as a way to recondition your reading “muscles”. And remember—you’re on vacation here! Your readings should be light and fun.

• Have someone pick up a home manicure and pedicure kit for you. Don’t scoff at this, male readers—these “spa” treatments feel great for everyone. You can do them yourself, or better yet, have a friend or caretaker help you. In my sickest days, I used to have my toenails painted crazy colors, with glitter on top. If I couldn’t go out dancing, at least my toes could look the part.

While you’ll still have to deal with your symptoms while on this “staycation”, the shifts it allows—literally to a new spot in the room or house, and figuratively to a mentality of fun and relaxation—might just make those symptoms slightly more bearable. No matter how sick you are, you deserve to dip your feet in the ocean, to listen to relaxing sounds, to feel the sun on your face. You deserve to feel like you’re having fun for an hour or a day or a week, even if it’s not in a tropical destination. So, leave your bags at home, and have a great trip!

10 Top Myths About Lyme Disease

Laughter Really Can Be the Best Medicine By Jennifer Crystal

January can be a tough month. With the holidays over and temperatures dipping to a deep freeze, the horizon can look as bleak as frozen tundra. This time of year is difficult for many people, not just those with chronic illness. The antidote I propose, humor, works universally.

Humor is known to reduce stress and anxiety. It’s said to help boost the immune system. In a 2005 Reader’s Digest article, Dr. Oz wrote, “When people use humor, the autonomic nervous system just tones down a bit to take it off high gear, and that allows the heart to relax.” Some hospitals now have “humor rooms”, and more and more “Laughing Clubs” are popping up around the nation.

That’s all well and good, I can hear you saying, but there’s nothing funny about chronic tick borne disease.

Fifteen-plus years with this insidious condition has taught me otherwise. Or rather, friends on the outside have taught me that it’s possible to look at my situation from a humorous perspective. At crucial low points in my journey, these friends put a twist on Lyme that turned my despair to laughter.

I’ve written before about the medical student I met in a bar who asked me quite seriously, “Are you sure you don’t have lemon disease?” When I heard the clause “Are you sure…”, I was prepared to battle with yet another doctor who, knowing nothing of my medical history, was about to question my diagnosis. What he actually said caught me so off-guard that I was, at first, stunned into silence. And then I burst out laughing.

As I often tell my writing students, humor opens people up, giving a writer the chance to then hit readers with something more serious. In this case, the joke about lemon disease let me know that this medical student appreciated the frustration of what I was expecting to hear, and recognized that taking a humorous approach to that expectation would open the possibility of a more serious discussion. I’d like to think the student and I both learned something that night: he about the patient’s perspective of tick borne disease, and I about humor’s power to disarm.

Another example happened many years earlier, when I had to step away from friends who were visiting, to take a nap. I hated missing any time with them, and felt silly and childish for needing to lie down. Ever the comic, my friend Pete diffused the situation by asking, “Do deer take naps, too?” Suddenly we were all laughing uproarously at the thought of tick-hosting animals settling down on the side of the road, tucking their front legs under their bodies like pillows. I traipsed off for my own nap with a smile on my face, which certainly helped me to rest easier.

My favorite example is from the eve of emergency gallbladder surgery in 2005. My intravenous antibiotics had unknowingly created gallstones as big as rolls of duct tape, causing excruciating pain and the dangerous possibility that my bile duct could burst. I was terrified. My dear college friend Elise listened to me cry on the phone, and tried everything to calm me down. Despite her best efforts, I was not soothed. Finally, Elise hung up and called her husband Mark, apparently telling him, “We need humor here.”

An hour later the following email appeared in my inbox:

The Top Ten Reasons Having Lyme Disease is Cool

By Mark Wilson

10. Arthritis, depression, organ failure, and insomnia—All For One Low Price!

9. You share something uniquely in common with Darryl Hall and John Oates (and now, updated version, Avril Lavigne)

8. Free research for your book about Lyme disease

7. “Finally! An excuse to quit work and live in my parents’ basement!”

6. Getting out of doing the dishes, because you can’t get your PICC line wet

5. Having people say, “Lyme disease—that’s the thing you get when you drink too many margaritas, right?”

4. Getting to hear people tell you, “Ohhh no, you don’t have a horribly debilitating disease! You’re just feeling a little sad right now.”

3. “Oh my God, sleep is sooooo overrated!”

2. It’s the official disease of the British Navy! (Limeys)

And the Number One Reason Why Having Lyme Disease is Cool:

1. If Jen Crystal has it, it must be cool!

That list was written over a decade ago, and it still makes me smile. Not only did it calm me down, it told me that my friends really got what I was going through. They understood my pain, frustration, and isolation enough to be able to make light of the situation. I felt reassured on so many levels, and went into surgery with a newfound calm.

While these examples helped me to poke fun at Lyme itself, humor of any sort can really be great medicine. When I was living back at my parents’ house and too sick to do anything on New Year’s Eve, my college friends started visiting me on New Year’s Day. They’d caravan to Connecticut from whereever they’d partied the night before, bringing hugs, smiles, and funny stories. They regaled me with tales that left me clutching my sides. I remember after they left the first time, my mother remarked, “I can’t remember the last time I heard you laugh like that.” The joy from those visits was perhaps the greatest tonic I got all year.

I recommend bottlefuls of this same “medicine” for everyone, especially during the dark days of January. Go ahead—laugh in the face of winter. All the cool kids are doing it!