Personal Stories Archives - Global Lyme Alliance Personal Stories Archives - Global Lyme Alliance

The Impatient Patient

by Jennifer Crystal When would I get better? Why was I not seeing improvement every day? Recently a friend’s toddler son asked her for a snack. Holding his baby sister, my friend told her son …MORE

Isolation Takes a Toll

by Madison Pinckney I could be in a room full of people, but still feel alone. I’m trapped inside my head. While I may have made it to the event, the pain is still there, …MORE

I Have Lyme Disease. Should I Get the COVID-19 ...

by Jennifer Crystal In my October “Dear Lyme Warrior…Help!” post, I answered the question everyone was asking at the time: “Should I get a COVID-19 vaccine when it becomes available?” We didn’t yet know how …MORE

Spring Warnings: Beware of the Great Imitator

Lyme disease had been masquerading as a litany of other health issues for years, until Slater Lawrence finally got wise in time to take back control. by Slater Lawrence Seemingly overnight, I had lost my …MORE

Podcast: Two Much Lyme

By Julia Allyn & Madison Pinckney Welcome to the Two Much Lyme podcast! Hosts Julia and Maddy both live with late-stage Lyme disease. Their conversations focus on the challenges of living with chronic illness through …MORE

Staying the Course When the End is in Sight

by Jennifer Crystal At long last, the solution we’ve all been hoping for to get out of the COVID-19 pandemic is here: vaccines have been approved. The end is in sight, but we’re not quite there …MORE

Lessons from Lyme: Lockdown Isn’t Forever

by Jennifer Crystal With COVID-19 cases surging, many states are returning to lockdown, and those that aren’t may soon be headed that way. The first time we were in lockdown, it was almost spring, so …MORE

Wondering What to Say to a Lyme Patient? Try Th...

by Jennifer Crystal A bereaved creative writing student of mine recently lamented how infrequently friends and family talk about her lost loved one. “When she was alive, everyone asked how she was doing,” the student …MORE

My Lyme Disease Is In Remission. How Do I Keep ...

by Jennifer Crystal The first time my doctor said the word “remission” for my late disseminated Lyme disease, I cheered.I’d been in treatment for Lyme and two of its co-infections, babesiosis and ehrlichiosis, for over …MORE

Living in the Present While Worrying About the ...

by Jennifer Crystal Tips and resources for living in the present during challenging times. As schools resume and cooler weather rolls in, the country is bracing for a possible second wave of COVID-19. The U.S. …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

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

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

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

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

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

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

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

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

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

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

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

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


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


By Jordan Younger Repurposed with permission from the writer for 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

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

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

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

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

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

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