by Jennifer Crystal Has your doctor recommended you get a PICC line to treat your Lyme disease? Here are the pros and cons of IV antibiotics for Lyme. When diagnosed right away, many cases of …MORE
Cooling Off When Swimming Isn’t an Option
by Jennifer Crystal Heat can take a toll when living with Lyme disease Summer is usually a time for celebration, relaxation, and fun in the sun, but 2020 presents special challenges. Due to the pandemic …MORE
Corona With a Twist of Lyme: Part 4
by Jennifer Crystal As many of you know from my previous blog posts and my webinar with Daniel Cameron, M.D., I got sick with COVID-19 in mid-March. I have charted my progress with in Corona With …MORE
Differentiating Between Babesia and COVID-19 Ai...
by Jennifer Crystal Air hunger is a symptom of both COVID-19 and the tick-borne illness babesia. Let me tell you about my own experience with both. During my April 2020 webinar on Lyme and COVID-19 …MORE
We’re Not Out of the Woods Yet
by Jennifer Crystal It’s finally Summer! The heat has arrived, the sun is out, and everyone wants to be outside. Before we begin to romp too freely in the great outdoors, however, we have to …MORE
The Lyme Voices You Didn’t Hear at TBDWG ...
The Tick-borne Disease Working Group (TBDWG) issued a public request to hear from patients willing to share their stories for its July 8, 2020 meeting. It’s an important part of these meetings, where the public …MORE
Calculating Risks
by Jennifer Crystal When living with Lyme disease and making decisions in regards to your health, it’s important to weigh the dangers, benefits, and consequences. It’s called taking calculated risks. When I got my PICC …MORE
You Know Your Body Best
by Jennifer Crystal …we grow up thinking of doctors as all-knowing. Whatever ‘the doctor’ said—be it the Primary Care Physician, the family doctor, or the ER doctor—was once deemed absolute. This doesn’t have to be …MORE
The Comfort of Solidarity
by Jennifer Crystal When I was bedridden with Lyme disease, two tick-borne co-infections babesia and ehrlichia, and chronic Epstein-Barr virus, I often felt terribly alone. Friends and family did their best to try to understand …MORE
Speaking Up for the Immunocompromised
by Jennifer Crystal I live in a high-rise apartment building with a common laundry room for hundreds of apartments. The long, narrow room is lined with ten washers and dryers, with barely enough space for one …MORE
Corona With a Twist of Lyme: Part 3
by Jennifer Crystal Since writing “Corona With a Twist of Lyme: Part 1” and following up with a sequel a few weeks later, I’ve received many emails from those who wonder how I’m doing. In …MORE
What a Difference a Year Makes
by Jennifer Crystal When I was little, my grandmother used to sing the Dinah Washington song, “What a difference a day makes, twenty-four little hours…” Later, memories of her singing those lyrics carried me through …MORE
PODCAST: In The Lymelight – Lyme Awarenes...
IN THE LYMELIGHT: A SHOW ABOUT … WELL … LYME DISEASE by Alex Moresco In The Lymelight · Lyme Awareness Month Podcast – 5:3:20, 2.24 PM Welcome to In The Lymelight: a show about…well…Lyme …MORE
Lyme and COVID-19 Panel: Follow-up Q and A
by Jennifer Crystal Last week, I had the opportunity to talk about my experience as a Lyme patient with COVID-19 on a panel with leading Lyme specialist Dr. Daniel Cameron. Thank you to everyone who …MORE
Corona With a Twist of Lyme: Part 2
by Jennifer Crystal I have been battling COVID-19 symptoms for almost five weeks. I have had Lyme disease and two tick-borne co-infections—babesia and ehrlichia—for twenty-three years, though my tick-borne diseases went undiagnosed for the first …MORE
The Importance of Digging Deep
by Jennifer Crystal I was a telling a date last night about my Lyme journey. He responded, “I read an article that said Lyme can be cured, but then I read another that said it …MORE
Lyme Brain: The Science and the Experience
by Jennifer Crystal At the 2019 International Lyme and Associated Diseases Society (ILADS) conference in Boston, infectious disease specialist Francine Hanberg, M.D. gave a talk about the causes and manifestations of “Lyme brain” called “Neuropathology …MORE
Lyme Education Ambassadors: Active In the Commu...
Global Lyme Alliance’s (GLA) Lyme Education Ambassador Program (LEAP) has been busy since it began in August 2018, thanks to a growing team of dedicated volunteer Ambassadors Working together to spread awareness drives change. …MORE
Lobbying for Lyme Disease on Capitol Hill
Learning first-hand the power of coming together to get things done, as Lyme patients and advocates joined together in Washington, D.C. to lobby for Lyme disease research and awareness by Sara Tyghter, Director of …MORE
The Leaps of Lyme
by Jennifer Crystal This year is a “leap year”, meaning that every four years we add February 29th to the calendar. This leap year got me thinking about the many leaps that are involved in …MORE
Mixed Messages: Finding Your Truth
by Jennifer Crystal Why is there so much conflicting information on Lyme disease? Here are a few tips on how to cope One student in the “Writing to Heal” course I teach recently wrote a …MORE
Hugging it Out: How Physical Connection Helps U...
by Jennifer Crystal Research shows that hugging is good for our health I remember vividly a scene from the medical show “Grey’s Anatomy” that aired years ago. All that happened in the scene was that …MORE
Stop the Itching! Lyme and Hives
by Jennifer Crystal Do you get unexplained hives? Could it be Lyme disease? Four years after I was bitten by a tick—and four years before I would be diagnosed with three tick-borne illnesses: Lyme, babesia, and …MORE
When Nothing’s Funny, Even Simulated Laughter C...
by Jennifer Crystal In 2016, I wrote a post called “Laughter Really Can Be the Best Medicine”. In it, I discussed the health benefits of laughter: it reduces stress and anxiety, decreases pain, strengthens resilience, …MORE
No Set Protocol
by Jennifer Crystal WHY ISN’T THERE A SET TREATMENT PROTOCOL FOR LYME DISEASE? Patients often write asking how I fought off Lyme and two other tick-borne diseases. I understand why they ask. When you read …MORE
Dear Lyme Warrior…Help!
by Jennifer Crystal Every few months, Jennifer Crystal devotes a column to answering your questions. Below she answers some that she’s recently received. Do you have a question for Jennifer? If so, email her at …MORE
2020 Vision For Lyme Warriors
by Jennifer Crystal Here are some things I now know for sure, things I wish I’d known, looking back on my Lyme Journey As the saying goes, “hindsight is 20/20.” It’s easy for us to …MORE
Tick-Borne Disease: The Year in Review
by Jennifer Crystal A few highlights on the advances in Lyme in 2019 The end of the year can be a time for reflection. What have we achieved? What losses have we endured? How have …MORE
Dealing With Brain Fog
by Jennifer Crystal What is brain fog, exactly? What does it feel like? What can a patient do to get rid of it? Writing a weekly blog post is a thrilling and rewarding process. I …MORE
Lyme: The Differential Diagnosis
By Jennifer Crystal With overlapping symptoms, how do you know that you have Lyme and not another disease? It’s important to consider all health factors A patient recently asked me, “How do you know you …MORE
The Difficulty—and Importance—of Asking for Help
by Jennifer Crystal Why is asking for help so hard? Sometimes it’s necessary, especially when you are chronically ill Last winter an acquaintance sustained an injury that made it difficult for her to do any …MORE
In The Lymelight: Dating and Relationships with...
IN THE LYMELIGHT: A SHOW ABOUT … WELL … LYME DISEASE In The Lymelight · In The Lymelight: Dating and Relationships with DJ McKerr Welcome to In The Lymelight: a show about…well…Lyme Disease. In the …MORE
William Beesmer: Why Giving Back is So Importan...
Life hasn’t always been easy for William Beesmer, a life-long resident of West Hurley, New York. Born into an impoverished family in 1943, he and his 15 brothers and sisters grew up in a home …MORE
Dear Lyme Warrior…Help!
by Jennifer Crystal Every few months, Jennifer Crystal devotes a column to answering your questions. Here she answers some questions she recently received. Do you have a question for Jennifer? Email her at [email protected] Can …MORE
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 …MORE
End of Summer Season Doesn’t Mean End of Tick S...
by Jennifer Crystal Tick season does not stop with the end of summer Last night I had an end-of-summer ice cream with someone who said, “I’ve probably met fifteen people this summer who have …MORE
Peer-to-Peer Support: A Personal Passion and Mi...
GLA launched its Peer-to-Peer Mentor Support program in June 2019. The inspiration for this important program was our friend Kasey Passen. When Kasey Passen, a Chicago chef and nutrition expert, contacted Global Lyme Alliance’s …MORE
A Call to Unite, Not Divide
by Jennifer Crystal We are all in the Lyme battle together. Let’s be united, not divided. In today’s divided times, we see a lot of hate on the internet. Politics have become more polarized …MORE
How to Be an Advocate with Your Non-Lyme Doctor
by Jennifer Crystal Here are 10 tips to most effectively work with your non-Lyme doctor Finding a good Lyme Literate Medical Doctor (LLMD) is hard enough. (If you’re having trouble finding one, GLA can …MORE
Meet Team GLA for the 2019 TCS New York City Ma...
Meet the Team GLA runners for the 2019 TCS New York City Marathon. All 5 have personal reasons for taking on the 26.2 mile run through the streets of New York City. If you …MORE
Traveling With Tick-Borne Illness
by Jennifer Crystal 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 …MORE
Ticks are Everywhere. Don’t Believe Me? I was B...
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 …MORE
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 …MORE
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 …MORE
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 …MORE
REGAINING CONTROL …of your day, life… Why agenc...
by Jennifer Crystal Agency—or, having a voice, having the power to make free choices about issues related to you or your body—has been a big buzzword in the news lately. I’ve been thinking about the …MORE
Men, Ticks, and Lyme Disease
Why do more men get diagnosed with Lyme disease than women? Is it chance? Is it job related (think about outdoor workers such as landscapers)? Or do they view the initial risk of a tick …MORE
Reframing Restrictions
by Jennifer Crystal A few months ago, someone told me that my life has a lot of restrictions. From a certain perspective, this statement seems true. To thrive in the context of chronic tick-borne illness, …MORE
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 …MORE
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 …MORE
Lyme Disease is Causing a Mental Health Crisis:...
By Kerry Heckman Note: This post discusses self-harm and suicide. If you feel suicidal or a danger to yourself or others, PLEASE call the National Suicide Prevention Lifeline: 1-800-273 TALK (8255),or text “HOME” to 741741 …MORE
The Time Warp of Tick-Borne Illness
by Jennifer Crystal I’d already lost three years of my life to illness. Then I got a taste of resumed independence and health, only to have those intimations of well-being quashed once more. The …MORE
Treating Instead of Denying Yourself
by Jennifer Crystal Spring is a time of rebirth and renewal. Many people engage in some kind of spring cleaning, whether it is airing out their homes or themselves. People open their windows and shake …MORE
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 …MORE
Be a Victor, Not a Victim
by Jennifer Crystal Many patients of tick-borne disease take years to get diagnosed. A lucky few ones find a bull’s-eye rash or an embedded tick, go to a physician who just happens to be Lyme …MORE
What Does it Mean to Herx?
by Jennifer Crystal Sometimes when I’m describing tick-borne illness, I feel like I’m speaking a foreign language. Most people have heard of Lyme disease—though too many mistakenly call it “Lyme’s” when there is actually no …MORE
Lyme Isn’t a Choice
by Jennifer Crystal Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with …MORE
Don’t Settle For Good Enough
by Jennifer Crystal In life, we’re often told not to settle. We don’t want to take a job or enter a relationship simply because it seems good enough. Doing so might bring short-term gains, but in …MORE
I Just Got Diagnosed with Lyme Disease. What Sh...
Welcome to the school of Lyme. 6 tips for those newly diagnosed with Lyme disease. by Jennifer Crystal Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As …MORE
Financing Tick-Borne Disease
by Jennifer Crystal Having Lyme disease is expensive. It can take a toll on you in more ways than one. Below are some resources and insights to help you or the patient in your life. …MORE
Can’t Versus Shouldn’t
by Jennifer Crystal “Should” is one of my least favorite words. Society gets us caught up in the idea of what we “should” be doing—we should work more, exercise more, take on more—and that puts …MORE
A Different Kind of Lyme Journey
Brooke Procida Takes to the Road to Promote Lyme Disease Healing Many of us have embarked on cross-country adventures with plans to enjoy America’s superb national parks, cultural landmarks and regional cuisine. But Brooke …MORE
A Tribute to Rick LaPierre, Our Friend and Advo...
Remembering our friend who advocated for patients with chronic illness By Diane Blanchard, Vice Chair, GLA Global Lyme Alliance (GLA) wants to say a fond goodbye to our dear friend, Rick LaPierre, who was …MORE
Starting Small in the New Year
by Jennifer Crystal New Year’s Day is supposed to be a time of renewal. People celebrate and make resolutions for a fresh start. But for Lyme patients and those with chronic illness, New Year’s can …MORE
Hope For the Holidays
by Jennifer Crystal The holidays are supposed to be the happiest time of the year. But for many people with chronic illnesses—and others suffering in different ways—the holidays can be really difficult. If you’re bedridden …MORE
Books and Resources That Have Helped Me On My J...
by Jennifer Crystal The holiday season is upon us, and you may be wondering what to get the Lyme patient in your life. Or maybe you’re a Lyme patient who is searching for books or …MORE
The Value of Visualization
by Jennifer Crystal When I was bedridden with Lyme disease and two of its co-infections—babesia and ehrlichia— people sometimes asked if I had tried meditation. Usually, tired of unsolicited advice from yet another person who …MORE
A Marathon Accomplishment by Team GLA Runners
Completing the TCS New York City Marathon, all 26.2 miles of it, is an amazing feat for anyone, let alone for those who suffer from Lyme. Yet last month, five Lyme warriors did exactly that, …MORE
Avoiding Reminders Until You’re Ready
by Jennifer Crystal When I was very sick with Lyme disease and two of its co-infections—specifically, babesia and ehrlichia—friends invited me to a Warren Miller ski movie. Every season, the renowned filmmaker put out a …MORE
A Different Kind of Denial
by Jennifer Crystal In my recent post The Danger of Denial, I spoke about the consequences of denying symptoms or diagnoses when battling serious illness like tick-borne disease. For years I ignored my health issues, …MORE
Five Warriors Tackle the Ultimate Road Race for...
Five runners gave new meaning to the term “Lyme warrior” on Sunday, November 4, 2018, as they completed in the largest marathon in the world—the TCS New York City Marathon. Representing Global Lyme Alliance’s first …MORE
Holidays: Relishing the In-Between Times
by Jennifer Crystal The build-up to Halloween is always an exciting time for kids. There’s so much anticipation—what will I be? What will my friends be? How much candy will I get? After the final …MORE
What Can the Red Sox Teach Us About Surviving T...
by Jennifer Crystal When I told my family I was thinking of moving to Boston, my mom said: “As long as you don’t become a Red Sox fan.” I had grown up a Mets fan, …MORE
School-Related Difficulties With Lyme Disease
by Jennifer Crystal Can you imagine missing all of the second grade? Or having to leave college? Lyme disease can have a devastating impact on kids in school. When I was a junior in …MORE
Scheduling Life with Lyme Disease
by Jennifer Crystal Flexible vs. rigid? How keeping to a schedule can impact one’s life with Lyme disease. In 2007, I suffered a severe relapse of Lyme and two of its tick-borne co-infections Babesia …MORE
The Idea of Hope
by Jennifer Crystal Hope is a tricky concept for patients with chronic illnesses. It is something everyone—healthy or sick—wants, but summoning hope is not always easy when the world around you looks bleak. Someone can …MORE
REMEMBERING ONE OF OUR OWN
by Scott Santarella, CEO of Global Lyme Alliance Kasey Passen was driven to help others in the fight against Lyme disease Some people have dreams about changing people’s lives but, through no fault of their …MORE
The Danger of Denial
by Jennifer Crystal One of the many rewards of writing this weekly blog is connecting with patients and caregivers all over the world. I receive emails from people telling me their stories and asking me …MORE
The Spectrum of Lyme
by Jennifer Crystal Just this week, I heard from yet another friend who had found an engorged tick on her child. With tick populations soaring, it’s not surprising that so many people are being bitten …MORE
To Sleep, Perchance to Dream
by Jennifer Crystal GLA writer and Lyme Warrior, Jennifer Crystal writes about her experience with “crazy dreams” as a result of neurological Lyme disease Last night I had a dream that a college friend and …MORE
Enjoying the Summer While Living with Lyme
by Jennifer Crystal When I first moved to Boston, I took a Duck Boat tour of the city. As the amphibious vehicle cruised the Charles River, the driver pointed out Spaulding Rehabilitation Hospital. I looked …MORE
Dealing with Lyme-related Fear
by Jennifer Crystal Last week I wrote about the well-founded fear of ticks which alarms us every summer, but especially now that infected tick populations are on the rise. Getting a tick bite that could …MORE
MY JOURNEY TO A CHRONIC LYME DISEASE DIAGNOSIS
By Jordan Younger Repurposed with permission from the writer for GLA.org It’s time for a mega health update, especially if you’ve seen my Instagram over the last week or so. I have been sharing openly there about …MORE
Tribute to The Men of Lyme
by Jennifer Crystal In my blog post “Gender and Lyme: Is Tick-Borne Disease Different for Women?”, I cited a study by John Aucott, M.D., of Johns Hopkins University which found that more men than women …MORE
The Quiet Desperation of Chronic and Mental Ill...
by Jennifer Crystal Like many of you, I’ve been shocked and saddened by the news of recent celebrity suicides. While none of these celebrities had Lyme disease, the quiet struggles that led them to end …MORE
Things I Never Thought I Would Do Before Lyme
by Kerry J. Heckman On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is …MORE
Honoring the Past, Embracing the Future
by Jennifer Crystal A friend recently shared with me the news that her grandmother had passed away. “She was 97,” she said. “It’s not like we didn’t know it was coming, but it’s still sad.” …MORE
Adding Joy and Pleasure to Life, No Matter When
by Jennifer Crystal I celebrated my 40th birthday by doing a cartwheel on a beach. A few weeks earlier, a childhood friend and I had been bemoaning our upcoming birthdays. We agreed that we would …MORE
Lyme’s Life Lessons: Sonya Rolin and Tatiana Do...
INTRODUCING GLA GREENWICH GALA CO-CHAIRS: PART 3 OF SERIES Anyone struggling with Lyme disease knows it can pretty much take over your life. It is an exhausting, socially isolating, life-altering illness that causes many …MORE
Gender and Lyme: Is Tick-Borne Disease Differen...
by Jennifer Crystal Every Thursday evening, three girl friends come over to eat ice cream with me and watch Grey’s Anatomy. Yes, that show is still on! Despite the fact that it’s been running for …MORE
A Mother and Daughter’s 12-Year Quest for...
Introducing GLA Greenwich Gala Co-Chairs: Part 2 of Series Not every Lyme patient is lucky enough to have a family that stands by their side when no one else will. That’s why Christina Womble …MORE
The Pros and Cons of Social Media When You Have...
by Kerry J. Heckman Before I was diagnosed with Lyme disease, I’d already been diagnosed with multiple autoimmune disorders. At the time, I turned to the internet to learn about diet protocols and treatment options …MORE
A Mother, A Supporter, A Lyme Warrior: Stephani...
Introducing GLA Greenwich Gala Co-Chairs: Part 1 of Series Three years ago, Stephanie Ercegovic (pictured with husband, Brian Foster) began a medical journey that took her from one doctor’s office to the next as …MORE
Seasons of Lyme
By Jennifer Crystal The change in seasons is usually an exciting time for most, but the jump from season to season can be especially trying for Lyme patients In the past couple weeks, many people …MORE
How to Show Someone With an Invisible Illness T...
by Kerry J. Heckman Invisible illnesses like Lyme disease are not always detected by your outward appearance. Here are 7 ways that you can show someone with an invisible illness that you “see” them. Last …MORE
In The Lymelight Episode 5
Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also …MORE
Not Immune
by Erin Walker Something is Not Right As the wife of PGA TOUR player and major winner Jimmy Walker, I am used to supporting him during challenges. In April of this year, my husband …MORE
In The Lymelight Episode 4: Things I wish I kne...
Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also …MORE
Marisol Thomas: Existing with Late-State Neurol...
Below is Marisol Thomas’ Honoree speech given at the 2017 Global Lyme Alliance New York Gala on October 11, 2017, printed in full with her permission. When the Global Lyme Alliance reached out to me …MORE
I’ve Been Sick So Long I Can’t Remember W...
by Kerry Heckman #MyLymeLife Lyme disease, like a shadow, is always there even if you don’t see it. Every facet of a person’s life is affected by it. It determines when and what we …MORE
A Letter to My Sick Self
by Bonnie van Geffen #MyLymeLife One Lyme Warrior’s Letter to Herself Dear Me, Dear Humiliated Me, Please don’t ever call your body weak again. It had to fight so much for so long, that …MORE
When I Miss My Life Before Lyme
by Kerry Heckman #MyLymeLife Do you reminisce about your life before Lyme? This morning my co-worker walked around to each of our offices to tell us that there were muffins the conference room left …MORE
Fear of Lyme Reinfection
by Jennifer Crystal Hoping you don’t get another tick bite and Lyme reinfection this spring. This time of year always makes me happy: the tulips come out, everything blooms, and the world feels hopeful …MORE
