Tag Archives: lyme disease symptoms

Rest: The Most Important Message of My Dreams

by Jennifer Crystal

Tick-borne illness and sleep disturbances

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

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

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

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

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

But I was sleeping just fine.

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

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

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

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

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

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


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].

kids lyme disease_physical symptoms

Kids and Lyme Disease: Time for a Post-Summer Symptom Check

Kids and Lyme disease, part 1. This blog addresses some common physical Lyme disease symptoms among children that may appear at early stage of the disease

 

Summer is the ideal time of year for kids to be outside—fun at camp, time at the beach, catching fireflies, and just being a kid running around. Summer is also  the time of year when ticks are most active.

As your kids start making the transition from spending the day outside to getting ready for school, it’s a good time to be on the lookout for any physical changes. For example, have you noticed any physical disparities in them? Do they seem like they are dragging a little? Is it tougher to get them out of bed in the morning? Are they complaining of headaches or neck pain? Are their joints bothering them? Did they develop any flu-like symptoms?

If you’ve answered “yes” to one or more of these questions, and this isn’t your children’s typical behavior, he or she could be suffering from a tick-borne infection, like Lyme disease.

Early-stage Lyme disease symptoms to look out for include, but are not limited to: fevers, stiff neck, headaches, tiredness, trouble sleeping, joint and muscle pain, and loss of appetite. As a result, the illness is often misdiagnosed as the flu—especially if there is no bulls-eye rash, often a tell-tale of Lyme disease. Keep in mind, however, that many patients don’t develop a rash and don’t recall the tick bite.

It’s easy for a parent to miss the early signs of tick-borne illness. A key challenge is that many of these symptoms can indicate a variety of illnesses. Joint pain, for example, often gets chalked up to ‘growing pains’ by many pediatricians. However, when combined with other symptoms, and the possibility of tick exposure, Lyme disease should be considered.

Physicians who say it’s growing pains should look to see if it’s tick-borne disease,” said Daniel Cameron, M.D., M.P.H. This is the most common illness that doctors and patients overlook. Unfortunately, some doctors won’t budge from this position and won’t even consider Lyme as the problem unless the child exhibits a rash.”

Further compounding the challenge in diagnosing early-stage Lyme is the inaccuracy of current diagnostic testing. Currently, common testing is inaccurate more than half the time. If you suspect Lyme, and your child does not have a rash or you don’t find a tick, it’s a good idea to write down all the symptoms they’re experiencing and timeline. This will help your physician.

COMMON EARLY-STAGE LYME DISEASE SYMPTOMS IN CHILDREN (2)“Lyme disease can be difficult to recognize in children,” says Dr. Cameron.  “Children frequently become ill with viruses and infections and as a result the disease manifestations particular to Lyme can be missed.”

It’s important for a child to get tested for Lyme disease when puzzling symptoms first manifest, before the illness gets a chance to progress to its late or chronic stage. If you suspect your child may be suffering from Lyme symptoms, he or she should be tested for all conceivable root causes of their problems—including the possibility of tick-borne diseases. Don’t forget, too, that a single tick bite can infect children with multiple tick-borne illnesses, making accurate diagnosis even more difficult.

If children get diagnosed early and treated promptly, they usually get well. Yet if Lyme disease goes undiagnosed and untreated, symptoms can worsen. Remember, parents know their child best. If you suspect something is not right, demand answers.


ALSO READ: Kids and Lyme Disease, part 2: Cognitive Symptoms and School

Kids and Lyme Disease: Helpful Resources

ticks are everywhere_caroline blog

Ticks are Everywhere. Don’t Believe Me? I was Bitten in My Own Bed.

By Caroline Lewis

Tick prevention was never something that crossed my mind growing up, despite living in Fairfield, Connecticut. I would often go on hikes with my family and friends or walk my dog without a care in the world. I went to summer camp in Maine for eight weeks every summer for six summers, and was never bitten, or even taught about tick-bite prevention.

That all changed on Wednesday, June 26th, 2019. On that morning, I got out of the shower to start my normal post-shower routine. As I was rubbing in lotion on my left arm, I felt a small bump. I looked down to see a black tick attached to my arm. I panicked.  Everything I had read about Lyme disease while working for GLA flooded my mind.

Now how ironic is this? Luckily, the day before I was bitten, I took home from GLA a tick removal tool that we include in our Be Tick AWARE prevention kits, with the intent of giving it to my mom to use on my dog.  Little did I know that I would be using them to extract a tick from myself less than 24 hours later. After carefully removing all of the tick with the tweezers, I placed it into a plastic bag (OK, two bags just to be safe), and brought it to work to show everyone that their newest member of the team had been bitten by the very menace that those of us at GLA fear the most.

In my case, I got this tick bite from simply being in my own home. I did not go outside that day (except to go to work); I did not hike; I did not walk my dog in the woods; I didn’t go near beach grasses; I didn’t roll about in fallen leaves, and so on. I should not have gotten a tick bite, but I did. I came home from work and stayed inside for the rest of the night. Ticks are everywhere, and that is something you cannot allow yourself to forget.

Back at work I went to my boss and told her what had happened.  Soon, the whole office was invested in my story, with our scientists looking at the tick with a magnifying glass. We concluded that the tick most likely came into my house on my dog and was in my arm for less than 24 hours, since I would have noticed it when I changed my clothes the night before, or I would have seen it on my arm during the day.

I logged onto the GLA website so I could find a lab to test my tick. I ended up choosing UMass Laboratory of Medical Zoology in Amherst, Massachusetts since they offered to test the tick for common tick-borne co-infections as well as the Lyme disease bacterium.  I packed the tick up and sent it off.

The UMass Labs sent me convenient texts and emails whenever they discovered something new about the tick. For example, they updated me on when received my tick.

However, while getting those texts and emails was admittedly great customer service, I grew more anxious waiting for the actual test results.  My mind was swirling with the worst possible fears and I could not relax.  My heart would race every time I thought about the rick results, filling me with anxieties.

Flash forward to Monday, July 1st, 2019: The tick tested positive for the Lyme disease bacterium, Borrelia burgdorferi, but none of its co-infections.  It was a black-legged deer tick in the nymph stage, and it was only partially fed – confirming our guess that the tick was attached to me for less than 24 hours.  This fact calmed me because I remembered reading that it’s typically accepted that that the tick needs to be feeding for at least 24 hours in order to infect a person with Lyme disease.  I’ll be okay, I thought, it was only attached for around 12 hours.

On Friday, July 5th, I was waiting at the DMV when I noticed a small red rash around my tick bite.

Oh no, I thought, there’s no way! I quickly scheduled a doctor’s appointment for later that day. I have a doctor who has seen me since birth, however, she wasn’t available on such short notice. So, I saw another doctor within the same practice.

When I arrived, the doctor did not believe I had been bitten by a tick and questioned me intensely.  She also stated that the rash was less than 5cm, so she did not think it was a tick bite – just an inflamed insect bite. This doctor completely dismissed my tick bite, and even told me that sending a tick out for testing was useless, ultimately crushing my confidence and making me question my certainty. Yes, this happened in Lyme endemic CT.

She sent me home with the words “keep an eye on.”  The whole appointment lasted around five minutes. I started to feel like the majority of Lyme patients out there who see doctors who steadfastly refuse to believe them no matter the iron-clad evidence. I started second guessing myself. What if I’m just allergic to tick bites generally?  What if the lab misidentified the bug in my arm? This caused extreme anxiety all weekend.

When I returned to work that Monday, I felt defeated. I hadn’t looked at my rash that morning, but when I revealed my arm to my coworkers, it was clear that a bulls-eye rash had formed.

My coworkers suggested meeting with my trusted family doctor this time to check out the rash.  Later that day, my family doctor was available, and she took a look at my arm. She gasped and exclaimed that I needed doxycycline immediately.  She even asked if she could show her intern my rash, claiming it was a perfect example of a Lyme bulls-eye rash.

My bull’s eye rash continued to get worse after I started Doxy.  Here are some pictures of the first three days after I started the antibiotics. By now the rash has diminished and is completely gone.

Here are pictures of my bulls-eye from July 9th to July 11th.

I was relieved to get a final diagnosis, I also felt extremely lucky.  Not lucky in the sense that I had contracted Lyme disease, but lucky because I had the bull’s eye rash, which is a classic symptom of Lyme. Many people who’ve been bitten by a tick never

recall the tick, or even develop a rash. Lucky, too, that I had a doctor who knew the science and believed in me. Moreover, because I found the tick which had bitten me in a very conspicuous place. Sadly, a lot of Lyme patients aren’t so fortunate.

Looking back, it is almost amusing that in my whole life I was never bitten by a tick until I started working at Global Lyme Alliance. Every time I tell my story, it leaves my friends and family gaping in disbelief.

This experience has given me a small window into what some Lyme patients face, from physical fatigue to physician dismissal – it’s utterly frustrating. Admittedly, my round of horror was relatively brief, and the odds for recovery are in my favor as I started treatment so early. Consider those who are suffering for years and never know what they are suffering from, often because of the lack of understanding by too many physicians and the lack of accurate diagnostics.

My thanks to GLA for providing me with this platform so I could share my Lyme story.  Thanks, too, for providing me with the resources and guidance to help me get through this trying process. And to those who think you’re immune from a tick bite, think again. I was bit inside of my own house!

 

 


Caroline is Global Lyme Alliance’s social media and marketing intern for the summer of 2019.  She is from Fairfield, Connecticut, only one hour away from the birthplace of Lyme disease, Old Lyme, CT.  She is a rising senior at Denison University in Granville, Ohio and she is studying Psychology.

The Aches and Pains of Tick-Borne Illnesses

by Jennifer Crystal

The first time I saw the award-winning Lyme documentary Under Our Skin, I was seated in the theater. In the film, a doctor who doesn’t believe in chronic Lyme was asked what might otherwise be causing the symptoms of the more than 427,000 people afflicted by tick-borne illness every year. He suggested it could just be the normal aches and pains of getting older.

With that bit of ignorance so baldly stated, everyone in the theater let out a collective groan.

There is a big difference between the aches and pains that come with tick-borne illnesses and those associated with every day life.

To be fair, those who haven’t wrestled with tick-borne illnesses might be confused by the generic descriptor “aches and pains.” That’s because it’s like so many other nebulous descriptions,—like “fatigue”—that could be the result of any number of illnesses. Let me explain.

In my former athletic life, I was a hard-core skier. In college I skied almost every winter day, and after I graduated and moved to Colorado, I skied every Saturday and Sunday from November to April. Often my muscles were sore after these workouts. Sometimes I’d even wake up with an aching back, but only because I’d worked my arms too hard the day before. These aches and pains were akin to those anyone might feel after working out at the gym, going for a run, or weeding the garden. The muscles get overworked, and you feel residual soreness.

Unless this type of soreness is indicative of a larger injury, it usually can be alleviated with gentle stretching, rest, ice and ibuprofen. Generally, the soreness dissipates within a few days, and you can continue with daily life—sometimes even exercising moderately—while these aches and pains heal. They are a nuisance but they’re not debilitating.

The same is true for what I know of the aches and pains of getting older. Granted, I am only 41, so I can’t speak yet to the pain my older readers feel when their bones start to complain or they develop arthritis. For me, the aches and pains of getting older mean that my knees creak when I crouch down to talk to a child. My back twinges more than it used to when I pick up a heavy bag or box and I’m more susceptible to a pulled muscle. When I fall down skiing, the bruises hurt a little more, I’m having more soreness the next day than when I was younger, and I tend to need more ibuprofen.

These aches and pains are tolerable. I might complain about them to a friend, but then I go on with my day. These pains don’t have me bedridden for months or years. They aren’t all over my entire body, just at the stressed joints. They don’t make me feel like I have a perpetual flu.

The aches and pains of Lyme disease do cover the entire body. When you have Lyme, you feel like your whole body is weighed down with a thick coating of molasses. It takes a slow, exhausting effort to lift your limbs. Your joints ache not in a post-work-out way, but in a way that feels like that molasses is pooling in your elbows, knees and toes. I’ve often felt a pulling sensation in these areas, like someone was gripping and yanking at my joints.

And the pain was not only in my joints. Because Lyme is a systemic inflammatory infection, I felt aches and pains all over my body. Think about how your ankle swells when you twist it badly. That’s because of inflammation. Now imagine that type of inflammation all over your entire body. That’s Lyme disease.

Different Lyme patients feel pain in different areas, depending where the Lyme bacteria (spirochetes) are gathered, and depending on which areas the infection has spread to. Some have migraine headaches. Some Lyme sufferers have back and neck pain that makes it hard to move. My worst aches were in my forearms and shins. I felt a deep pain in those bones, which would bruise to the touch. Returning to the molasses analogy, sometimes my forearms felt so weighted down that I could not type. I could hand write one sentence and then had to lie down.

These aches and pains went on for months, until antibiotics and prescription anti-inflammatory medication killed enough Lyme bacteria that the molasses feeling blissfully dissipated. The pain could not have been alleviated with ibuprofen or ice, because it was the result of a bacterial infection that was deep in my body. It wasn’t just a nuisance; it made daily life impossible.

Now, when I get “normal” aches and pains—when I’m sore from skiing, or my calves hurt from walking around the city in bad shoes, I know it’s not Lyme-related, because it’s not as deep or painful. It goes away on its own in a few days. When I less frequently feel a pulling sensation in my joints, shins or forearms, or when I can actually feel the spirochetes buzzing under the skin in those areas,–when I put my hands on my skin, I can feel a buzzing underneath, like electricity–then I know it’s a Lyme-related problem.

If only Lyme patients could show others what’s inside—if only we could demonstrate our infection the way we see illustrations of a smoker’s lungs. Perhaps then people who don’t have Lyme would better understand. To reiterate, Lyme pain is not the same as the typical aches and pains of aging, and it needs to be treated seriously, by a Lyme Literate Medical Doctor (LLMD). You can find one here. 


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]

Building Resilience

by Jennifer Crystal

Last spring was incredibly stressful for me. With adrenaline, good maintenance routines, and a bit of luck, I completed an intense amount of written work, a teaching load that included a lot of traumatic subject matter, and emotional upheaval in my personal life. By the time I stopped teaching in June, I was burned out.

That’s when my Lyme symptoms started to flare, and I started to panic.

Earlier in the spring, I’d experienced a flare-up of babesia symptoms—air hunger, post-exertional fatigue, low blood sugar—and quickly nipped them in the bud with medication. I had an uptick in neuropsychiatric symptoms —sleep disturbances, obsessive thoughts, some anxiety and depression—but assumed those were all a response to external stressors, not a flare up of infection. My Lyme Literate Medical Doctor (LLMD) agreed, but cautioned that I really needed to decompress this summer to restore the good health I’ve grown used to.

Borrelia burgdorferi, the spirochete that causes Lyme disease

As I finally took a rest, Lyme symptoms I hadn’t felt in years suddenly crept back. My shins and forearms ached, as they had when I first had Lyme. When I put my hands on my arms and legs, I felt the buzz of spirochetes spinning under my skin. I could still do errands and even go kayaking, but my store of energy was low and ran out completely afterwards. It didn’t feel like I had the flu and I wasn’t bedridden as I’d been in my early Lyme days, but I was more tired than I’d been in some time. Blood work confirmed that my inflammatory markers were high—not enough to warrant a mediation change, but what my doctor called normal variations in a relapsing cycle.

That frightened me. I hadn’t heard the word “relapse” in years. I’ve been in remission for more than a decade, and while I’ve had periods when my sleep was off, when my nightmares returned, when my night sweats were heavy, they were always quickly alleviated with a shift in supplements or extra integrative manual therapy appointments and neurofeedback sessions. (For information on integrative manual therapy, including research on how and why it works, check out the book Body Wisdom by Sharon Giammatteo, Ph.D. She’s also written several manuals on integrative manual therapy techniques for specific systems of the body).

“You’re much more resilient than when I first met you,” my integrative manual therapist has remarked often in the last few years. Overall, he feels far less bacteria in my body, and he says when I do have a flare up, my body knows how to bounce back from it quickly. I also know how to take better care of myself, and I’m generally more in tune with fluctuations in my body, which helps.

My neurofeedback practitioner has made the same comment about resilience I’ve arrived in his office haggard and crazed after several nights of wild dreams or several days of missing my essential mid-day nap. A few minutes in to the session, my brain would kindly remember why it was there and what it was doing, and settle back down again. After the sessions, I usually go home and take a good nap. “Signs of a well-trained brain,” my practitioner says. (The type of neurofeedback I do is called Neuroptimal. To learn more about it, click here)

Over time, without my even realizing it, my body and brain have built resilience. I’ve had enough appointments and sessions that my body has slowly gotten stronger. I’ve been on medications and supplements, and have kept to a solid routine, long enough that I’ve developed good foundational resilience. When a blow hits, I can weather it better than I used to.

Still, this most recent episode scared me. What if I did myself in? I worried, remembering how similar stressors led to my complete relapse over a decade ago.

However, I didn’t have the same armor back then. I had no antibiotics or immune-boosting supplements to defend against replicating spirochetes. I had some maintenance routines in place, but not enough of them. I had stopped adjunct integrative manual therapy and neurofeedback. I didn’t have good local support. I hadn’t yet accepted my illnesses as part of me, and therefore chided myself for a lack of fortitude when my body couldn’t perform the way I wanted it to.

Now, with years of building resilience—medically, emotionally, physically, and neurologically—I have much stronger physiological armor. I rested a lot last week. I did a lot of integrative manual therapy to quiet the buzzing spirochetes. I underwent a neurofeedback session. I took a true break from work. I ate well. I increased one of my homeopathic drops. I drank green tea.

And this week I am feeling much better. Not 100% yet, so I still need to be careful. I need to keep my foot off the accelerator for awhile. My blood work showed I was at a precipice, so I intend to keep working to tip back towards full remission. My improvement this week gives me hope that will happen soon.

If you are currently bedridden in the throes of one or more tick-borne illnesses, you might be thinking, Ha! I wish I could get better in a week! Believe me, I know how you feel. I was bedridden for years. I often took two steps back before I took one step forward. I did everything my doctors told me to do and I still didn’t feel I was making improvement.

What you can’t see from that position, though, is that your body really is building up resilience. If you’re on the right medications (a good LLMD will create the right pharmacological protocol for you), doing whatever adjunct therapies work for you, eating nutritiously, getting the rest you need, and generally taking care of yourself, eventually you should slowly start to feel better. Your Herxheimer reactions won’t be as bad. Your flare ups won’t be as severe.

I say this ten years out. Remember that healing is not linear but a holistic practice. You will cycle through terrible periods, but you’re ever inching ever forward, building resilience along the way. I hope that my resilience helps me continue to fight through this rough patch, and I hope that yours leads you to many years of good health.


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]

Not All Lyme Rashes Are Created Equal

by Jennifer Crystal

Lyme disease: that’s the illness you get when you find a bulls-eye rash, right?

It very well could be, but here’s the catch. The bulls-eye rash isn’t the only sign of Lyme disease. Nor does every Lyme rash (Erythema Migrans or EM) present as a target with red rings around it. To assume that Lyme always comes with a bulls-eye rash is, in fact, to be way off target and—worse—poorly informed when it comes to diagnosing the disease.

In fact, less than 50% of Lyme patients ever find a bulls-eye rash, or any rash at all. But that doesn’t mean they don’t have Lyme. It means they, and their doctors, will need to look a little further.

I found a rash on my forearm in the summer of 1997 while working at a camp in Maine. It wasn’t a bulls-eye shape. It was a series of red dots, sort of stippled, that extended from my wrist almost to my elbow. It wasn’t raised and it didn’t itch.

“It’s probably from your sleeping bag or something,” the camp nurse said. In 1997 Lyme disease was not on the public health radar or mine, which is ironic since I grew up in Connecticut where the disease was first discovered.

That same summer I developed hypoglycemia, which I later learned is a common symptom of the tick-borne disease babesia, a co-infection of Lyme. That fall I was bedridden with flu-like symptoms. Had I presented these symptoms, and my rash, to medical professionals today, they might have seen a pattern and tested me for tick-borne illnesses. Lyme literacy is improving, but not all doctors look at individual symptoms in a big picture way—and that pesky myth of the bulls-eye rash, especially if you don’t have one, still persists, which is why I continue to share my story.

Sample Em-RashEM rashes present in many different ways. Some are small. Some are big and blotchy. Some are spotted. Some are pink and some are bright red. If these sentences are starting to sound like a Dr. Seuss book, it’s because the lesson they contain is simple. If you find any type of rash at all, especially during the summer months, and if you subsequently experience symptoms of tick-borne illness, do not assume your rash is nothing. Show it to a Lyme Literate Medical Doctor (LLMD), who you can find here.

If you, your children, or your pets spend time outdoors, it’s important to do nightly tick checks of everyone exposed. As you are looking for culprits, also keep your eye out for rashes of all kinds. They don’t always appear in obvious places. A rash could be on your back—have someone else look!—in your groin, between your toes, behind your ears, or on your scalp.

And a rash might not be there at all, but you can have Lyme disease without ever getting one. Therefore, in addition to checking yourself for ticks and rashes, it’s important that you keep an eye out for typical Lyme symptoms. If you experience flu-like symptoms such as fatigue, joint aches, headaches, neuropathy, Bell’s palsy, or any other unusual symptom, do not brush it off as a summer flu.

Maybe you’ll get lucky, and that’s all it will be, the summer flu. But it’s better to be safe than sorry; let an LLMD make that call. You will also want to keep an eye out for symptoms of co-infections, like the hypoglycemia which I experienced.

Of course, if you are lucky enough to find a bulls-eye rash, take it as an unequivocal sign: you have Lyme disease. Do not wait to see if you develop symptoms. That can take months. By which time the disease, and possibly co-infections, will have spread further into your system and may cross the blood-brain barrier. Then the disease(s) will be much harder to treat.

In a way, finding a bulls-eye rash is like winning the lottery. If you’re smart, you have a ticket to immediate diagnosis and treatment. Moreover, it’s unlikely that you won’t have to deal with chronic symptoms and long-term treatments. If you aren’t so lucky as to win a bulls-eye, keep looking for ticks, atypical rashes, and symptoms of tick-borne disease.

I wish you all a Lyme-free summer!


Opinions expressed by contributors are their own.

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

A Hard Day’s Night

By Marisa Mann

Fighting Lyme and Mast Cell Activation Syndrome After Dark

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

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

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

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

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

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

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

 


marisa mannOpinions expressed by contributors are their own.

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

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]

Spring REALLY Will Come

by Jennifer Crystal

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

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

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

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

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

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

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

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


jennifer crystal

Opinions expressed by contributors are their own.

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

[email protected]

My #1 Headache Trigger? Lyme disease

By Jennifer Crystal

Skiing has always been part of my life. I went to a college in Vermont that had its own ski run. After graduation, I moved to Colorado to teach high school, and to become a ski instructor. It was supposed to be the high point of my life, and in many ways it was, but there were also some very low points because I was wrestling with undiagnosed tick-borne illnesses.

One such low found me on the bathroom floor, writhing in pain from an excruciating migraine. The throbbing started over my left eye, working its way up over that side of my head and around the back to my neck. I felt as if my brain was going to explode out of my skull.

“It’s probably from the altitude,” a doctor later told me. In the years since I had started developing strange symptoms—fever, joint aches, exhaustion, hand tremors, hives—I grew accustomed to doctors writing them off with a simple explanation.

But altitude was not causing my migraines. In fact, I was suffering from Lyme disease, Ehrlichia, and Babesia, the last being a tick-borne parasite that consumes oxygen in red blood cells. Due to these infections, a scan would later show that I was not getting enough oxygen to the left side of my brain. Living at a high altitude certainly didn’t help this situation, but the root cause was the fact that my oxygen levels were already compromised by infection.

Babesia is not the only tick-borne disease that can cause headaches; so can Ehrlichia and relapsing fevers. But with or without co-infections, the vast majority of Lyme disease patients complain of headaches as a chief symptom, with pain ranging from moderate to severe. Many patients, myself included, have encountered migraines so debilitating they’re relegated to bed in a dark room due to pain, light sensitivity and nausea. Though tick-borne diseases can cause pain throughout the cranium, migraines are usually focused to one side. As a child, I had four surgeries to correct weak muscles in my eyes, especially on the left, leaving scar tissue over that eye. I later learned that Lyme bacteria, spirochetes, like to hide out in scar tissue, which may explain why my migraines always started over that eye.

So why are headaches so common for Lyme patients? Spirochetes can enter the central nervous system by crossing the blood-brain barrier. This barrier is supposed to protect the brain from infection, but spirochetes are tricky and swift and can coil their way across, causing headaches for their victims.

Lyme is an inflammatory disease, so once spirochetes enter the central nervous system, they cause swelling there. In his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Dr. Richard Horowitz equates this inflammation to a fire that ignites heat, redness, pain, and loss of function.[1] Feeling like my brain was going to explode out of my skull was not really hyperbole; my head was indeed swollen, but I just couldn’t see it the way I would be able to if  I’d had a swollen ankle or knee.

At my lowest points of illness, I got migraines several times a week. I tried to try to push through the pain. I wanted to be living my life, teaching and skiing. But I always paid a high price for not listening to my body—or in this case, to my brain. Ignoring the headache only increased the pain, sometimes sending me to bed for two or three days at a time. I got prescription medication, which I learned to take as soon as I felt a headache coming on, rather than trying to wait it out. I also found that staying hydrated, eating foods rich in iron, and stretching gently—to help increase blood flow—sometimes helped alleviate my headaches.

The best treatment, however, was rest. If you have a swollen ankle or knee, you stay off that joint, giving it time to heal. The same is true for your brain. Your head needs time to recover from inflammation, and nothing has helped that process more for me than sleep. Though I rarely get migraines these days, I still get pressure on the left side of my head when I get tired or neurologically overwhelmed. I never want to spend a day in bed, but one is better than being there for several days—and it’s certainly better than writhing on the bathroom floor. A day spent recuperating means more days on the slopes, and I’ll take as many of those as I can get.

[1] Horowitz, Richard I. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press. 2013. (186)


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. Do you have a question for Jennifer? Email her at  [email protected]

Is Lyme Disease Treatable?

Dr. Harriet Kotsoris, chief scientific officer with Global Lyme Alliance, discusses Lyme disease treatment, prevention, and transmission.

 

Below is an excerpt from, “Lyme Disease: An Overview”, a podcast with Dr. Kotsoris and Dr. Mayla Hsu, science officer with GLA. Listen to the entire podcast below.


 

Host: Is Lyme disease treatable? What are some of the common treatments?

Dr. Kotsoris: Lyme disease is what we’d call treatable, the question in everybody’s mind is “Is it completely curable?” In the acute stages, the school of thought is that it is curable with prompt adequate treatment with 3-4 weeks of Doxycycline or Amoxicillin. The longer a person walks around with the disease undetected and untreated the more difficult it is to eradicate. That’s because the Borrelia burgdorferi organism is fleeting in the bloodstream and quickly hides and travels to other organs of the body including the muscles, joints, heart, brain, mostly connective tissue.

It is felt that even in the face of antibiotics these Borrelia burgdorferi bacteria may actually become tolerant, not resistant, but tolerant. That means that they go dormant and hide in the tissues only to reactivate at a later date when the body is put under some type of stress. Again, these issues are quite controversial and this is because many feel that although the bacteria may be viable in the body they’re not culturable. In other words, we cannot prove that there are still living bacteria in these patients with post-treatment Lyme disease syndrome. We’re just hopeful that one day we’ll have better detection methods, both early and late to distinguish acute cases in a prompt fashion, which will then lead to a higher success rate of treatment. Also markers for chronic phase of the illness or post-treatment, or post-infectious Lyme disease, to show whether or not there still are viable bacteria left in this patients body.

Host: How is Lyme disease transmitted?

Dr. Kotsoris: Lyme disease is transmitted by a vector, that is an agent that will a pathogen or disease-producing organism from itself to a host. In the instance of Lyme disease, the human is an accidental dead-end host. In the United States as I mentioned before, the disease is transmitted by the blacklegged tick. The tick crawls around, attaches to a nice warm moist area of the human body and then bites the host, and in doing so transmits the bacterium from the tick belly into the bloodstream of the human being. Dr. Hsu will elaborate more as to the adaptations that are required for this to be a successful event.

Host: What are some adaptations that ticks have that allow them to so successfully transmit Lyme disease?

Dr. Hsu: The tick genome was actually just sequenced this past year, 2016. It revealed all sorts of interesting information about why ticks have evolved to be so successful at transmitting Lyme disease. It turns out that ticks have very efficient olfaction, or smell detectors on their sensory organs. They are able to, as Harriet said, crawl around and look for parts of our body that are damp and hidden, and that they can hide. They attach once they’ve found this good spot, like your belly button or between your toes. They have barbed mouth parts, so they efficiently saw through the skin and they and they attach.

Once they’re attached they can’t detach very easily owing to this barbed penetrating mouth part. Once they start feeding, their saliva is like this very incredible chemical soup that has all kinds of components in it that facilitate disease transmission, but it also where’s it’s supposed to facilitate feeding by the ticks. It has an anesthesia so you cannot feel it. They have also in their saliva a blood thinner, so your blood flows better, blood vessel dilators so you bleed better. The tick itself stays attached for up to 36 hours while it’s feeding on you, and its body size can actually increase by 100 times.

Host: How could you protect yourself from Lyme disease?

Dr. Hsu: I think there are, as Harriet said, it all hinges on that tick bite. There are low-tech protection that you can have, which is just simply to avoid tick bite in the first place, tucking your pants into your boots, wearing bug sprays that contain DEET, which repel ticks, checking yourself for ticks and removing them immediately. Another strategy is to wash our clothes in Picaridin or Permethrin, and these are chemicals that will repel ticks and other mites, bugs from biting us. It’s interesting to note that the Armed Forces are now doing this with their clothes to protect our military.

Host: What are some adaptations that have made the Lyme disease bacterium so successful?

Dr. Kotsoris: Borrelia burgdorferi is quite an intelligent bacterium. Initially, when it first enters the bloodstream it … Actually, because of its shape, the corkscrew shape can penetrate into tissues like a roto-rooter machine. Likewise, the outer surface of Borrelia burgdorferi has a whole host of fatty substances and proteinaceous substances. These proteinaceous substances vary from strain to strain, and so it’s incredibly difficult for the immune system to be able to combat Borrelia burgdorferi effectively. In fact, Borrelia burgdorferi has adapted many mechanisms and actually hijack the immune system that cause certain antibody-producing cells not to operate effectively, so that the bacterium cannot be coated by antibodies and then can’t be mopped up by other immune-related cells in your body.


 

Listen to entire podcast below:

 

Podcast: The Facts on Lyme Disease

Understanding Lyme disease can be as complicated as the bacteria that causes it. Global Lyme Alliance is launching a podcast series to help make sense of it all. The podcasts will cover everything from basic Lyme disease facts to research initiatives.

The first podcast features GLA’s Dr. Harriet Kotsoris, Chief Scientific Officer, and Dr. Mayla Hsu, Science Officer. Dr. Kotsoris and Dr. Hsu help clarify some of the basic facts about Lyme disease, including symptoms and diagnosis. Below is an excerpt.


 

Host:  In this series of podcasts we’ll answer a few common questions and unveil some surprising truths about Lyme disease. In this first podcast we’re hoping to cover some basic facts about Lyme disease. To get us started, Harriet, what exactly is Lyme disease?

Dr. Harriet Kotsoris:  Lyme disease is an infectious disease that’s transmitted by a vector known as the blacklegged tick or Ixodes scapularis on the East Coast. Ixodes pacificus is on the West Coast. The disease is caused by a corkscrew shaped bacterium or spirochete known as Borrelia burgdorferi. It’s a multi-organ, multi-system disease. It’s acute onset may be heralded by an Erythema migrans or expanding bull’s-eye rash leading to flu-like illness consisting of headache, chills, fever, malaise, muscle aches and pains. Later stages of the disease can involve other organ systems of the body including the heart, brain, and joints. In it’s delayed or late disseminated phase it is particularly difficult and entrenched in the body, and more difficult to treat.

Host: What is the incidence of Lyme disease in America and around the world?

Dr. Kotsoris: The incidence of Lyme disease has been recently recognized to have grown exponentially. In the United States alone there are over 330,000 new cases reported each year. It is estimated that over 1 million in Europe have been affected by the disease and 1 in 25 people all around the world. These statistics come from European studies and actually one of our Scientific Advisory Board members, doctor Luc Montagnier, co-discoverer of the HIV.

Host: What are some of the tests used to diagnose Lyme disease? Are these tests dependable?

Dr. Mayla Hsu: The diagnostic test that is approved for Lyme disease testing here in the United States consists of 2 separate tests. The first is an ELISA or EIA Assay, and what that detects is antibodies that are specific for the Lyme bacterium, the Borrelia burgdorferi. Typically what happens is the person’s blood is drawn, and it goes through this first level of test and if it is positive or equivocal it goes through a second round of testing which is called the Western Blot. The Western Blot is a more specific test. It actually separates out the Borrelia burgdorferi proteins and then it looks for antibodies against 10 specific Borrelia proteins. There has to be 5 out of 10 possible antibodies against the bacteria that are present in the person’s blood for that test to be scored as a positive.

You asked whether or not these tests are dependable? Actually, they’re not, and that’s a big problem in Lyme disease because up to 60% of the two-tiered test negatives are considered to be possibly false negatives. We really don’t know in cases like that. If you get a Lyme disease test that’s positive, okay great. If tested positive now we can determine what your treatment is going to be, but if you test negative and you still have symptoms that are very much in line with Lyme disease it’s very hard to know if you were actually negative or not.

Below is the the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme disease, discussing diagnosis, treatment and prevention.


 

Follow Global Lyme Alliance on SoundCloud to hear future podcasts.

HOT, HOT, HOT: WHAT A HEAT WAVE MEANS FOR LYME PATIENTS

BY JENNIFER CRYSTAL

When I opened up Facebook on July 4th, the app showed me a photo I’ve posted every year on that day since I joined the site. The scene is summer camp in Maine—where I got my original tick bite—and the year is 2002. My fellow Head Counselors and I are gathered around a hot grill, making pancakes on one of the hottest Independence Days on record. The temperature was 105 degrees.

Decked out in red, white and blue, my friends and I are smiling in the photo. I may have put on a good face—something Lymies do far too often—but inside, I felt like I was dying. Or said in another way, I felt like I was burning up.

July 4, 2002 was a brutally hot day for everyone involved. When I re-post that photo, my friends write the same comments every time: “The hottest I ever was.” “Even the lake was hot.” “The barometer for all other hot days. Am I hot? Yes. Am I July 4, 2002 hot? No? Then I’ll survive.”

All joking aside, I remember feeling like I legitimately might not survive that scorching day. Everyone was sweating, everyone was complaining, everyone was drinking lots of water. But I’d already downed two water bottles by the time I finished cooking breakfast, and still had a headache coming on. By noon that headache had turned into a full-blown migraine; the pressure was such that I wondered if my brain might explode right out of my skull. It felt like nails were being hammered into my left eyelid, over and over. I spent the afternoon sacked out on my bed, chiding myself for not being able to suck it up and play Capture the Flag. I felt weak and ashamed—not to mention nauseous, exhausted and debilitated by excruciating pain.

What I didn’t know was that my body had been harboring tick-borne diseases for five years at that point. I didn’t know that extreme temperatures can exacerbate Lyme symptoms, and that my already compromised system was fighting a much bigger battle than typical overheating. I didn’t know that the hot sun was enraging the bacteria in my body, bringing it—and its inflammatory manifestations, like the migraine—to the surface.

Why does heat affect Lyme so severely? For starters, spirochetes can’t live at very high temperatures. This is why some Lyme patients use infrared saunas, to try and kill off—and sweat out—the Lyme bacteria. Use of these saunas is controversial, however, because they make some patients much sicker. That’s because killing spirochetes at such a high and fast rate can cause a Herxheimer reaction, leaving the body full of dead toxins that it can’t efficiently eliminate. A day in the hot sun can have the same effect.

Another reason Lymies can’t tolerate extreme temperatures, both hot and cold, is because tick-borne diseases can damage the nervous system. Some patients’ bodies have trouble regulating blood pressure and heart rate, and extreme temperatures can send those processes into distress. Common Lyme symptoms of dizziness, fatigue, and joint aches—hard enough to deal with on a moderate day—are intensified in the heat of summer or the bitterness of winter. And because our nervous systems are out of whack, we often can’t recognize that we’re getting too hot or too cold until it’s too late.

I liken this sensation—or lack thereof—to being a lobster in a slow-boiling pot. You’ve all heard the explanation for why lobsters don’t try to climb out of their cooking pots: because the water temperature is slowing rising, the lobsters don’t notice what’s happening until they’re cooked. The same is true for Lymies on hot days. I can be outside feeling fine…fine…fine…and then suddenly, seemingly out of nowhere, I am not fine. Suddenly my face is on fire, my heart is racing, my glands are leaking sweat, and I’m feeling dizzy and faint.

Lyme treatment can also intensify these effects, since many medications (especially antibiotics in the tetracycline family) cause phototoxicity. If you are on one of these medicines, you can’t be in the sun at all, but even umbrellas, hats, and sunglasses don’t protect overheating. High temperatures and humidity, rampant at this time of year, are a dangerous mix for Lyme patients.

So what’s a Lymie to do? Here are a few suggestions for keeping cool:

  • Stay in—This may seem obvious, but when healthy friends are out playing in the sunshine and you have enough energy to join them for a bit, it can be really hard to say no. Remember, though, that your energy will be depleted much faster than usual in high heat. Cooler days will come, with better energy to go with them. Don’t waste what little reserves you have on a 100 degree day. If your home doesn’t have air-conditioning, see if you can stay with a friend, or rest at a local cooling center. Fans are not enough to cool an overheated Lymie.
  • Take breaks—Even if you’re feeling okay when you’re outside, your body will likely overheat without warning. Try to give yourself breaks before this happens, by ducking in to air-conditioned buildings or sitting in the shade.
  • Hydrate—I don’t just mean order a cold drink when you stop in to one of those air-conditioned places. I mean carry water with you at all times. Make sure you have more than enough with you for your outing, no matter how short it may be. You never know when you will get stuck in line at the pharmacy, and suddenly that overheated feeling comes on…
  • Indulge in cool treats—Without breaking the Lyme diet, you can enjoy refreshing treats. You may not be able to sip a frozen daiquiri, but you can drink flavored seltzer with ice, smoothies, and all-natural lemonade; you can eat naturally-sweetened ice cream (So Delicious is my personal favorite); and you can have popsicles like Paleo Frozen Pops or Luna and Larry’s Organic Coconut Bliss Bars.
  • Take a lukewarm shower—Your instinct might be to take a cold shower, but your body will have to work harder to regulate its temperature afterwards. Let the shower do the regulating for you!
  • Put your wrists in cool water—The pressure points on your wrists, and also on your ankles, react quickly to cool temperatures, and can spread that coolness around your body. Run the veins of your wrists under a tap to quickly lower your body temperature.
  • Put a cool compress over your face and neck—Similar to putting your wrists or ankles in cool water, this trick is a quick way to lower your body temperature.
  • Invest in a cooling towel—Sold at sports shops and at stores like Bed Bath and Beyond, Lowes, and Walmart, these towels are basically the opposite of heating pads. While running your own towel under cool water works just fine, these towels are specifically designed to quickly chill you, and are made to target certain areas of your body.

And finally, as always, be gentle with yourself. You are suffering from an insidious disease that rears its ugly head when the sun blazes down. Don’t chide yourself the way I did. You are not weak. You have angry spirochetes in your body, and if you treat them kindly during the heat wave, they just may let you go out to eat lobster, instead of becoming one. Then you can smile in the photo for real.