Real change happens when we work together. This is especially true when it comes to advancing the Lyme disease and tick-borne illness agenda, be it through research, awareness, funding, or patient support.
At Global Lyme Alliance (GLA) we are eternally grateful for the tireless work of our board member Avril Lavigne and our amazing partners in The Avril Lavigne Foundation. The Avril Lavigne Foundation recently invited GLA’s CEO Scott Santarella and Chief Scientific Officer Tim Sellati to join them at the Reaching the Last Mile (RLM) Forum in Abu Dhabi, to discuss and collaborate on the world stage about the risks of tick-borne illness and how we can come together to help patients.
The biennial Reaching the Last Mile (RLM) Forum, held in Abu Dhabi, convenes global health leaders to share insights and best practices on how to map out, eliminate & eradicate infectious diseases. Held under the patronage of His Highness Sheikh Mohamed bin Zayed, Crown Prince of Abu Dhabi, in partnership with the Bill & Melinda Gates Foundation, this year’s RLM Forum brought together more than 300 preeminent individuals from government, private sector, philanthropy & academia, to discuss reaching the last mile of disease elimination faster – including The Avril Lavigne Foundation!
We were honored to be invited by The Avril Lavigne Foundation to participate alongside incredible organizations like The Clinton Foundation, The Gates Foundation, Project Hope, The Carter Center, The World Health Organization and to join them in educating global health community about Lyme and other tick-borne/vector-borne diseases. During the Forum, we had the opportunity to hear from a number of prominent global health leaders, exhibit Louvre Abu Dhabi, and participate in a Round Table focused on Climate Change & Global Health (chaired by the esteemed Dr. Anthony Costello). Participants included the UAE’s Ministers of Climate Change and Health, Rt Hon Helen Clark (former Prime Minister of New Zealand), @MalariaNoMore@ChildrensPhila and others. During the Forum Bill Gates and other philanthropic leaders from around the world pledged over $2.6 BILLION to eradicate Polio. The Forum was collaborative, educational and beyond inspiring.
We are grateful to have been included in this prestigious event.
For many people, summer means travel, but for Lyme patients, vacationing is not as simple as it was in our healthier days. I miss being able to just throw a pair of pajamas and a toothbrush in a bag and take off for the weekend. Now my baggage is bigger and heavier. I have medications and supplements, specialty foods, and extra pajamas (in case of night sweats) that I have to bring along. I need to consider my daily schedule and my energy levels. Travel is still possible, but I’ve had to make some adjustments.
Many patients write with questions about travel. Can they get on a plane with a PICC line in? Can they bring their medications and supplements on a plane? How far can they travel? I responded to some of these questions in my recent Dear Lyme Warrior…Help post. But here’s a longer practical guide to help you determine if, how, and when you might travel, and what you should keep in mind when you do so.
Travel abilities—Your stamina for travel will fluctuate. This is probably the most important lesson I can impart. When I was first ill with Lyme and two co-infections babesia and ehrlichia, I could barely walk, let alone travel. It was exhausting to sit in the car and go to a doctor’s appointment. Someone else always had to drive. As my physical and neurological symptoms improved over more than a decade, I have been able to slowly increase my ability to travel. First I could drive myself short distances. Then I could take a short, direct flight if someone was with me. I’ve worked up to a four hour flight now. Hopefully I’ll be able to go even farther in the future, but I also have to remember that progress isn’t linear. With a relapsing condition like Lyme, there will be times when it will seem easy for me to fly to Florida, and times when it will be difficult for me to drive for an hour.
PICC lines—Yes! You can fly with a port! The important thing is to think about timing and supplies. How long will you be away? If you have a PICC line, how many boluses of medication will you need? Contact your airline to see about bringing your boluses on the plane, especially since most need to be refrigerated. Some airlines allow you to bring them through security in a cooler, but you should make them aware. Be sure to have your written prescription with you. Next, think about where you will store your boluses upon arrival. Is there a secure, easily accessible refrigerator? Be sure to bring extra boluses and extra supplies, and to have the emergency contact information of your doctor. You may also want to ask your doctor what you should do if there’s a problem with your line while you’re away (is there a nurse you can call? Should you go to a local medical clinic?).
Medications and supplements—When flying, I always carry on all of my medications and supplements in their original bottles. You do not want to run the risk of your medicine being lost in a checked bag. Some people get written prescriptions from their doctors in case they get questioned by airline security. I have never had this problem—prescription bottles with current labels have always sufficed, even when I went out of the country—but you might need this information if you’re traveling with liquid medication (for more information on flying with medication, visit tsa.gov and click “Travel Tips”). If you’re traveling by car, make sure your pill bag is in the car itself, not in an overheated trunk. I tape closed all the compartments of my weekly pill box, so they don’t spill all over my bag. I always bring more pills and supplements than I’ll actually need, in case I get stuck somewhere.
Health information sheet—Write out a list of your diagnoses, your medications and supplements, your allergies, your dietary restrictions, your practitioners and their contact information, the name and number of an emergency contact, and any other pertinent medical information. I keep a copy of this list in my suitcase, a copy in my purse/wallet, and an e-copy on my phone.
Pharmacy and doctor information—In case you do get stuck somewhere and need an emergency refill, find out before you go if your pharmacy has a store near your destination, and if they can transfer your prescriptions. Also be sure to have your doctor’s phone number easily accessible, and have it written on your health information sheet.
Food—Make sure you will be able to get foods that fit your dietary restrictions at your travel destination. Plan in advance—read restaurant menus online, research what grocery stores are nearby, talk to your hosts, call your hotel to see if there will be a refrigerator in your room. I always pack extra gluten-free snacks, even if I wind up putting them all back in my cupboard when I get home. Remember to bring meals and snacks in your carry-on, too. Additionally, I always carry a water bottle, and I bring rehydration tablets if I’m going to be somewhere where I won’t be able to find electrolyte-enhanced water (which I often need due to nightsweats).
Plan extra recovery time before and after your travel—Depending on how far you are traveling, you may need extra time to rest upon arrival. When I fly somewhere, I don’t do anything else on the travel day besides sleep and eat, and often I need the following day to recuperate, too. When I travel by car, I make sure that there will be a quiet place for me to nap upon arrival. Build in a couple days for recuperation upon your return, too. This means in general that you will need more time for travel—a three-day trip may turn in to a week-long endeavor.
Budget—The reality of traveling with Lyme disease is that it’s probably going to cost more than if you weren’t ill, especially if you’re a budget-minded traveler like me. I used to take red-eye flights or make multiple connections, because those options cost less. I can’t do that anymore. In order to save enough energy to function at my destination, I need to take direct flights at times that work well in my schedule, and that’s more expensive. To do otherwise though would jeopardize my health, and that would be even more expensive.
Have a buddy!—It’s much, much easier to travel when you’re accompanied by someone who understands your needs. Having someone to carry your bags, to drive, to help you navigate a new area, to help you find appropriate foods, all this makes travel much more feasible for Lyme patients. Make sure your travel companion is aware of your needs and how they might impact your itinerary. (For example, if you need to nap every afternoon, will there be a way for you to do that without disrupting everyone else’s day? Or will others be okay taking a midday siesta, too?).
Ask yourself, is it worth it?— Always ask yourself, is the distance of this travel, and the energy it will take out of me, worth it? Is this someplace you really want to go or someone you really want to see? Will the travel jeopardize your health? Think about costs of travel not just in terms of financial costs, but also in terms of costs to your health, including downtime.
Wishing you safe travels to farther and farther destinations!
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].
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.
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:
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?
Listen to the audio version of this blog here:
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 short–term 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 tick–borne 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.”
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.
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.
Where are you from? It’s a standard question, asked as casually as “How are you?” or “What do you do?” In today’s world, however, there isn’t always a standard answer.
I have friends who were born in one country, raised in another and now work in a third. My response—“I live in Boston, but I’m originally from Connecticut”—isn’t quite as cosmopolitan as those of my friends, but it still gives pause. It inevitably leads to the follow-up question, “So how did you get from there to here?” To that, there certainly isn’t a simple answer.
My journey from Connecticut to Massachusetts included stops in Washington, DC, Vermont, Paris, and Colorado, but the trajectory wasn’t as glamorous as it sounds. It also involved a long layover in Lyme land. Literally, that means I spent years recuperating in my childhood bed in Connecticut, the state in which Lyme was first discovered. I spent years there in what felt like an alternate universe—completely separate from the healthy, social, active life I’d once known.
In her book Illness as Metaphor, Susan Sontag wrote,
Illness is the nightside of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick… sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Lyme patients are cast suddenly and severely into that darker place. Banished by the mere bite of a tick, we are unwitting citizens of the land of illness, not wanting—and often unwilling—to claim it as home. Before I got sick, I saw home as my physical environment. As a skier, I often sought out mountain towns where I felt a connection to the land, the people, and their way of life. When tick-borne illness forced me to leave Colorado, the place I then called home—I felt displaced.
Too sick to care for themselves, many Lyme patients have to move “home”—often to their parents’ house, a place that is no longer home for most adults. Some move in with other relatives, or with friends. No matter where we land, most of us lose two homes in the process: the physical place where we once lived, and the healthy kingdom we once inhabited. And while we appreciate those who open their houses and care for us, the loss of the places and lives we called our own leaves us feeling stranded. Long-term illness is terribly lonely and isolating.
To survive Lyme, I had to turn my definition of home on its side. Feeling disconnected from my physical environment and life, generally I had to really think about myself as a voyager. What parts of myself did I bring with me, no matter where I went? What grounded me, no matter where I lived or what I could do? For me, the answer was my sense of humor, my tenacity, my faith and friends who extended bridges of kindness.
I still rely on those things because even though I’m now in remission I’m often still in unchartered territory. Anyone who re-emerges from the kingdom of the sick finds themselves on uncertain ground. There’s a sense of reverse culture shock as we try to get back to work, to activities, to social lives. We can’t always trust how people will respond to us, especially regarding Lyme. Will the person I’m meeting be Lyme literate? Will she or he understand the kingdom from which I’ve come from?
I didn’t expect my journey to take such a sharp detour. My life hasn’t wound up where I expected it to be. But Lyme did lead me to discover a lot about myself. Most importantly, it led me to writing. I’d wanted to be a writer since I was a child, but it was a forgotten dream during my active, healthy days; I was too busy with other pursuits. Now writing is my pursuit. It grounds me more than anything else. So in a way, Lyme has actually led me home.
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]
When I was first sick with Lyme disease, time dragged endlessly.
I lay in bed or on the couch—too neurologically impaired to do “normal” sick-day activities like watch TV or read a book—and listened to the clock tick. I had more time on my hands than most people would know what to do with, but no energy to do anything with it. Time was my enemy, because I was waiting, waiting, waiting for it to pass so I could feel better. It was like watching sand drip one grain at a time through an hourglass, only to flip it over and suffer again through the same long, painful day. The same long, sleepless night. This went on for years.
Now that I am in remission, the hourglass is still my nemesis. Because I am better but not fully cured—the case for most people who suffer with long-term tick–borne illness—I need to allocate judiciously the limited energy I do have. And that tricky hourglass, which once dripped slower than molasses, now seems to flow faster every day.
Sick or healthy, all of us have an hourglass. Everyone has a certain amount of energy to spend each day. In a busy, wired world, we are all running the race against time. Friends often remark to me, “Don’t you feel like time goes faster now that we’re getting older?” or, “Where did the summer go?” Now we’re heading in to fall; with shorter days that will be clipped even tighter when we turn back the clocks in a few weeks. The race is picking up.
For Lymies in any stage of recovery, that race is amplified by the fact that our energy can run out without warning. A patient can be having a good hour—the first in days!—and then, suddenly hit a wall. Doctors use this term because it is akin to the feeling marathon runners get when they suddenly lose steam due to depletion of glycogen in their muscles. Runners can sometimes combat the condition by ingesting carbohydrates; Lyme patients, on the other hand, find themselves slumped in bed. When we’re out of energy, we’re out. We have no reserves.
As I started to feel better, my hourglass became more reliable. It still can run out more quickly than expected, but for the most part, I know how much energy I have and how much time I have to spend it. By my calculations, it’s roughly half the time that able-bodied people get. My energy is best in the mornings. I wake up feeling strong and clear-headed. Morning is my time to write, to teach, to exercise, to go food shopping. Not all in the same morning, mind you. Harkening back to last week’s post, I’m careful to write one morning and exercise the next, leaving the grocery shopping for its own day.
Afternoons are another story. I hit a wall every afternoon around 1:30, and must nap. The rest isn’t optional. Without it, I melt down, making the evening long and cranky and the next day worthless. Naps keep my hourglass dripping steadily, and ensure the fullest glass possible when I flip it over the next day.
To a healthy person working a 40+hour work week, naps probably sound luxurious. Yes, I am lucky to be able to take the time out I need in order to function. But it also means I lose my afternoons. If I don’t meet a morning deadline, I can’t say, “That’s okay—I’ll just finish it this afternoon.” I can read essays or run small errands later in the day, but my major tasks—especially creative work—must be done in the morning.
Whether we’re better in the morning or at night, most Lymies are trying to fit a day’s work—or a day’s living—into a few short hours. This is why we get anxious when dinner plans get shifted an hour later. It’s not because we’ve become demanding and finicky from our illness. It’s because we know the clock is ticking. If I have to be in bed by 10:00 and dinner with friends gets pushed from 7:00 to 8:00, my time with them gets cut short. I’ll probably have to leave early, because the repercussions for pushing my bedtime are severe.
It’s a hard balance, trying to be flexible while living with strict time constraints. I’m grateful to friends and family who accept and accommodate my unusual schedule. If you know a Lymie, please be patient with them. Recognize that they have very little control over their hourglass of energy. If they don’t call you back, or cancel on dinner or cut short your conversation, it’s nothing personal; it just means they’re out of sand.
Time does fly by these days, and I’m just fine with that. It means my years of waiting for time to pass are over. I may not get as much time in a day as a healthy person, but I’m able to use, instead of suffer through, the hours I do get. And that, to me, is a glass half full.
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. [email protected]
Taking Care of Our Overall Health Within the Context of Chronic Lyme
In the first section of this series, I cautioned that not every ache and pain is Lyme disease; we must be sure to take care of our overall health, even when we are consumed by tick borne illness. What we also must remember, though, is that when something ailing us isn’t Lyme, it is affected by our tick borne illness, and vice-versa. When you have a chronic illness, that condition must be considered when making all other medical decisions.
Take the common cold. This age-old, mucus-infested ailment is begrudged by all. Whether you have a chronic illness or you’re otherwise the picture of health, getting a cold just plain stinks. But whereas most people can shake that cold in a week, Lymies and people with other ongoing illnesses have a much harder time fighting it off. Basic illnesses are not basic for us; they are possible cause for our underlying conditions to flare, because our immune systems are already compromised.
A Lyme patient can have a cold for a month, which can be difficult for healthy people to understand. Whereas most people’s symptoms gradually improve, a compromised patient may find the mucus growing greener and the cough getting deeper. Before long, the cold has turned in to an upper respiratory infection. And this is where Lymies can get into trouble.
Because most of us are on long term antibiotics, we have to keep those treatments in mind when considering management of an acute infection. This is not a problem when our primary care physicians are Lyme literate. They’ll be sure to put us on an antibiotic in a different family than the ones we’re currently on, for maximum effectiveness. I’ve been on oral antibiotics for years, and have never had a problem clearing up an acute infection with a different antibiotic.
The problem, though, is that it’s not easy to find a Lyme literate primary care doctor. When you’re sniveling with a sinus infection, you want to be in good hands. The last thing you need is someone who doesn’t understand your long term treatment protocol, or, worse, someone who questions why you’re on that protocol at all. It’s hard enough to fight that fight when you’re feeling sick from Lyme; add another infection on top of that, and you’re quickly trampled.
Not only do doctors need to understand how a new antibiotic will work (or not) with your current regimen, but they also need to understand how new treatment might affect your Lyme. Let’s say you didn’t have a cold, but your Lyme doctor suddenly decided to add an antibiotic to your usual cocktail. You might have a Herxheimer reaction; the same could therefore happen when an antibiotic is used to treat an acute infection.
We also need to keep this big picture mindset when going through “basic” medical procedures. Because of my tick borne illnesses, I know that it will take me longer than most people to recover from my wisdom teeth extractions. I also know that spirochetes like to hang out in gums, and that this surgery puts me at risk both for infection and for a Lyme flare up. Luckily, my doctor knows this too, and so she’s put me on a prophylactic antibiotic that works well with my usual treatment protocol and will help protect me through this procedure.
The key is making sure your primary care physician understands tick borne illness, and your management of it, before you get an acute infection. If your primary care doctor doesn’t believe in long term Lyme or doesn’t seem confident in your treatment, find a new doctor. I know that’s much easier said than done. For me, the important thing is not so much that my primary care doctor is Lyme literate (though clearly that’s the ideal), but that she’s willing to learn and willing to talk with my Lyme specialist to discuss treatment plans. I need to her to be willing to talk to me about what works best for me, and not jockey with me for control of my own health. Open-minded doctors are at least a little easier to come by than Lyme literate PCPs.
And, of course, as with your ongoing battle with tick borne illness, you are your best advocate. We patients are the front line of Lyme literacy. We need to understand our own illnesses and medications so that we can readily explain them to doctors. We need to keep tabs on what treatments have been successful for our past acute infections, and speak up when confronted with new ones. We must remember that tick borne illnesses are part of the makeup of our bodies; when acute infection or routine medical procedures strike, we need to keep that big picture in mind, for the sake of our overall health.