Tag Archives: lyme warrior

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, rather than to merely survive it, I do have to adhere to certain rules that probably seem restrictive to the average healthy person. Before I got sick, I no doubt would have thought such a schedule was restrictive, too.

What exactly are these “restrictions”? I need to nap for a couple hours every afternoon. I need to make sure I’m in bed around 10:00 p.m. I don’t eat gluten or processed sugar, and I don’t drink alcohol or caffeine. I pace myself physically, planning out travel and exercise so I can enjoy activities rather than become depleted by them. I avoid over-stimulating events like concerts and fireworks that can rile up my otherwise controlled neurological symptoms. I don’t watch Game of Thrones.

These parameters are what allow me to function. It’s taken time, reassurance, and a perspective shift to recognize these boundaries are ensuring my health. In order to do a lot, I’m stinting myself a little. Without these “restrictions” in place, I would quite simply relapse.

Though I have generally accepted the limits or parameters on my life, sometimes I still do get frustrated by them. I’d prefer not to have to cut an afternoon or an evening short because I have to sleep. I don’t like missing out on things. I don’t want my needs to hold anyone else back, and I try not to let them (“You guys stay out; I’ll take a Lyft home.” “I’ll ski with you in the morning; you stay for the afternoon while I nap.” “I’ll drive separately to the party, so you won’t have to leave early when I do”).

Because I make these efforts, it hurt when someone told me that my life has too many restrictions.

It also gave me pause. I realized restrictions was not a word I had ever used before. I had often used the word “limitations”. When giving a quick overview of my decades-long struggle through misdiagnosis, diagnosis, treatment, relapse, and remission, I have said, “It was really bad for a lot of years. Luckily I’m much better now, though I do still have certain limitations.”

Limitations seems not as negative as “restrictions”, but it’s hardly positive, either. Using it gives other people permission to see my life as limited, when in fact I want them to appreciate the truer glass-half-full version of me.

I don’t have restrictions. I have needs.

Sure, my needs are different from those of others. But the fact is, everyone has needs. Introverts, for instance, need time alone. Extroverts need to recharge with others. Shift workers need to sleep during the day. These are simply things people need to do to live their best lives. To be the best version of themselves.

Sometimes that means putting other people’s needs first, to make sure they’re taken care of, too. Parents need to take time off work when their child is sick. They need to leave a dinner party earlier than they might otherwise have, so they can get their child to bed.

What matters is not what these boundaries of life are, but how they are viewed. Should we bemoan all that we can’t do? Or should we appreciate all that we can do?  I could say, I can’t work a 9-5 job and I can’t celebrate the New Year at midnight, and I can’t go to a Dave Matthews concert anymore. Or I could say, by not doing those things, I can work part-time. I can write. I can avoid brain fog. I can exercise. I can visit friends.

There was a time, when I was completely bedridden, when I couldn’t do anything. I know how lucky I am to have gotten as well as I have. Some Lyme patients are paralyzed. Some have schizophrenia. Other people have cancer and have to endure chemotherapy. There are veterans who suffer PTSD and limb amputation, people who have traumatic brain injuries and strokes and terminal diagnoses.

Even those people can choose how they view their restrictions. Take Jean Dominique Bauby, the former editor of French Elle magazine who suffered a stroke that left him with “locked-in syndrome”. His cognitive function was fine, but the only part of his body he could move was his left eyelid.

So what did he do? He figured out a communication system whereby he blinked letters to a scribe. It was a painstakingly slow process—it took him two minutes to blink out one word—and yet he managed to write an entire book, The Diving Bell and the Butterfly. Instead of being weighed down by his situation, Bauby found a way to shine his light out into the world.

He inspires me to see my own limitations in a new light. When I looked up restrictions in Roget’s Thesaurus, I found a long list of negative words, but in the middle of it, in capital letters, was the word CARE.

To honor your needs is to care for yourself, to free yourself from victimhood and, instead, turn yourself into a victor, a Lyme warrior. To honor your needs is to see yourself as chronically awesome rather than chronically ill.

If someone else can’t see the beauty of that reframing, that shortsightedness is their restriction, not yours.


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: lymewarriorjennifercrystal@gmail.com

team gla runners

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, running that grueling course to help raise funds for Global Lyme Alliance (GLA).

Recently we caught up with the five members of GLA’s first official charity partnership team— Annie Cunningham of Denver, Colorado, Thor Kirleis of North Reading, Massachusetts, Nani Luculescu of Los Alamitos, California, Dan Gautreau, of Brooklyn, NY, and Team Captain Jesse Ruben, also of Brooklyn. Each teammate has been afflicted by Lyme in one way or another, sadly confirming what we all know about the growing threat of this disease. We asked them to reflect on Team GLA and their marathon experience. Here’s what they had to say.

Dan Gautreau, along with three other team members, has sadly experienced Lyme firsthand. Dan ran an astonishing time of 3:30:58. He found strength in the team’s unity. “Running in the 2018 NYC Marathon on behalf of GLA,” Dan said, “was a truly inspirational experience! I could not be prouder of what we accomplished as a team.” He also admitted to counting on the city’s spectators for those moments when his illness interfered, and his stamina flagged. “The city was thriving with support and energy. It really was an amazing experience.”

Team GLA’s Thor Kirleis followed Dan across the finish line, completing his 114th marathon in 3:37:14. “Beating Lyme is my cause,” said Thor. Through his race, he says, he wanted to show Lyme patients that getting through the day is not always mind over matter. He went into race day hoping that his physical strength would match his mental fortitude but anticipated a Lyme flare up. “I thought I would have to walk the entire course because of how Lyme robbed me of the ability to run,” Thor said. But I was able to cobble together 10 training runs, and on race day Lyme didn’t stand in my way. I went on to have a great race.”

In the weeks since the marathon, Thor is still savoring the experience. “It was so special to me to feel like an athlete again and to have at least one more day of living without the limitations of Lyme. I felt like I was on cloud nine,” he said. He hopes that feeling will last, and on behalf of his teammates, shared that “we all want it to last.” On his long car ride back home to Boston, Thor said: “I came away with renewed motivation to continue to battle this disease.” When asked if he is considering running again in 2019, our Lyme warrior exclaimed, “I will be back. We will all be back.”

Annie Cunningham echoed Thor’s sentiments when asked if she would run consider participating in the marathon again. “Heck yeah,” she said. While running is usually considered an individualized sport, she realized that being a part of Team GLA was quite the opposite. Lyme disease can feel isolating but running with those who have suffered as she has helped her to a 4:50:00 finish. “My teammates understood my struggles and supported me,” she said. While Annie could be seen with a smile on her face throughout the marathon, she faced some adversity at Mile 17 when her feet started to hurt. “Nine [more] miles are a long way to go when your legs begin to cramp. I knew that I could slow down but I didn’t want to stop. I just took it one mile at a time, keeping my head up to enjoy the sights and the cheers from the fans.” Post-race, Annie experienced a unique form of a runner’s high: she felt less inflamed than usual. Although she felt sore, “it’s a good sore,” she assured us. Annie found the race to be physically, mentally, and emotionally beneficial. Like her friend Thor, “I have hope too,” said Team GLA’s top fundraiser.

One team member, Nani Luculescu, experienced a struggle no family member should have to go through. Nani lost her father to Lyme-induced ALS several years ago and ran the marathon in his honor. “I never want anyone to have to suffer the way he did,” she said. While crossing a marathon finish line is something only 1% of people get to do, to Nani it meant knowing she had made a difference. On finishing, she said: “I couldn’t hold back the tears!  My dad would be so proud of me for making it to the finish line and raising over $5000 for Global Lyme Alliance all by myself.” After Nani crossed the finish line, she put on her cheerleader hat to applaud the final marathon finishers. “I can’t get enough of this,” she said. “I don’t want it to end!” The 2018 TCS New York City Marathon is the first of many to come for this spirited teammate; Nani plans to run for Team GLA next year. “When can I sign up?” She asked, thanking GLA for “an amazing opportunity.”

As Team Captain Jesse Ruben said: “It was so special for me to represent the Lyme disease community while running through all five boroughs of New York City. What a beautiful, incredible day.” An integral part of Team GLA, Ruben provided support to his teammates after unofficially running the marathon for Global Lyme Alliance in the past. We asked Jesse how he would feel about returning next year. “I am going to do it every year forever,” he said.

Collectively, Team GLA raised over $21,000 to eradicate Lyme and help those who are suffering. Please join with us in congratulating our phenomenal team. Perhaps Jesse said it best: “I hope that running the TCS New York City Marathon shows all those struggling with Lyme that you can get better. You can do it, too.”

RACE HIGHLIGHTS

Team GLA Pre-Race Dinner
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Interested in joining Team GLA? There are a variety of events you can pursue. Contact events@GLA.org for an opportunity near you.

marathon_jesse ruben

Five Warriors Tackle the Ultimate Road Race for Lyme

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.

Team Dinner_NYC Marathon 2018
Team GLA gathers for pre-marathon dinner: Dan Gautreau, Jesse Ruben, Thor Kirleis, Annie Cunningham, and Nani Luculescu.

Representing Global Lyme Alliance’s first team entry as an official charity partner in the marathon—and the first for any Lyme organization—were Jesse Ruben (team captain, pictured above), Annie Cunningham, Thor Kirleis, Nani Luculescu, and Dan Gautreau. These amazing warriors not only entered, trained for, competed in and finished the 26.2-mile race; while doing so they raised more than $21,000 to support GLA’s mission, and ultimately, help patients.

Jesse, Annie, Thor, Nani, Dan, and Annie each have a personal Lyme story.

Jesse, who personally suffered from Lyme’s devastating symptoms, runs the marathon in part to prove that he can. “If you had told me a couple of years ago that I’d be training for the marathon, there’s no way I would’ve believed you. I was spending most of my time in bed. My fatigue was unbearable.” I was fortunate enough to find a treatment that was effective and to be in remission— and that’s a miracle.”

annie cunningham

Annie spent two years fighting the effects of Lyme. She is determined to spread awareness about the threat of Lyme to friends, family and “anyone who will listen.” Her goal in running the marathon was “simply to finish and to maintain my health all while raising awareness and funds for an amazing and vital organization!”

thor kirleisThor has been fighting Lyme for the past six years. He has run over 110 marathons in his 30 years of running, but Lyme nearly ended all that— to put it mildly. Since contracting Lyme disease (and several co-infections), he has gone on stretches where he could not run even one full stride. He constitutes an example to us all, as does entire Team GLA, about what it means to overcome adversity.

NANI LUCULESCUNani ran in memory of her father who lost his battle with Lyme-induced ALS in 2013. Running with Team GLA to raise money and awareness for Lyme was especially important to her. It was, in fact, one of her dad’s final wishes before he died. She says, “for me to tell others about Lyme so they wouldn’t have to suffer as he did.”

dan gautreauDan was diagnosed with Lyme disease when he was 21. “While my symptoms have subsided in recent years,” he said, “there is so much to be done to lessen the impact on those affected.” His hope was that by running on behalf of GLA, he could fundraise and spread awareness to combat Lyme and other tick-borne diseases. Among all the team members, Dan’s time was the fastest, 3:30:58.

Please join GLA in giving these five amazing warriors a marathon size thank you for their tremendous achievement. To show your support, donate to Team GLA today.

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her replies to questions she has recently received. Do you have a question for Jennifer? If so, email her.

How do you explain to someone that one day you’re so tired and your body aches, and the next day you’re fine?

This is a question with which patients with chronic illness wrestle, whether they have tick-borne disease or another condition that follows a relapsing pattern. With such illnesses, symptoms ebb and flow, even when you’re under treatment. For example, antibiotics can kill bacteria faster than your body can eliminate them, thus causing a back up of toxins known as a Jarisch-Herxheimer reaction. Simply put, this makes you feel worse before better. Once the toxins are eliminated, you go through a period of feeling better, which can last a couple days or a couple weeks, before the process starts over again. It’s very hard for most people who aren’t Lyme literate to understand this. Their understanding of illness is that it is linear: you get sick, you take medicine, and you slowly start to improve until you’re better.

Such is the case for bronchitis or a sinus infection, but not for tick-borne illnesses. I think healing from Lyme is akin to walking up a spiral staircase. You will go around and around. Sometimes you’ll stop on a landing and be steady for awhile. Then you’ll continue climbing, spiraling through various symptoms. You may even slip backwards, because the staircase is steep. But ultimately, after some delay, you make your way to the top, which is relative wellness. Perhaps you can give the naysayers in your life this image to help them understand what it means to have a relapsing illness.

If they don’t understand, find other people who do. Some people in your life just aren’t going to get it, and you don’t have the energy to argue with them; you need to conserve that energy on your health. This is especially hard when the people who don’t understand are the people you need the most—family or close friends. Some may come around eventually; some may not. Focus on the friends and support group members who do validate how you feel. That’s the medicine you really need!

Is it okay that I’ve had symptoms for two years?

There is no “okay” or “normal” with Lyme and other tick-borne diseases. No two individual (cases are alike. Someone who finds an engorged tick and is treated immediately might only have symptoms for a few weeks. Someone like me who went undiagnosed for eight years might be symptomatic through several years of treatment, with lingering, milder symptoms afterwards. Someone who is never properly diagnosed and treated will have symptoms their whole life.

I can tell you that longer-term cases of Lyme disease—those that fall under Stage 2 or Stage 3 of the disease can take years to treat. Spirochetes are smart. They’ve evolved to spiral away from antibiotics, requiring intense, long-term treatment to treat them. Tick-borne co-infections often complicate and lengthen the treatment period, since each pathogen requires a different kind of treatment. Another variable is the strength of a patient’s immune system and how well he or she responds to medication.

If you are under the care of a Lyme Literate Medical Doctor (LLMD) and your symptoms have persisted but improved even a bit over the last two years, then yes, I’d say that sounds pretty typical. If you are not yet seeing an LLMD, GLA can help you find one. Lyme is a bacterial infection that won’t go away on its own. If you’ve received treatment and are still symptomatic, you may need additional treatment. Only an LLMD can determine what’s best for your specific case.

When you said that it felt like your arms and legs were “jumping,” was it like twitching?  

Yes, that would be an accurate description. I described this feeling as part of air hunger, when my arms and legs would sometimes feel like they were having a panic attack. What I meant by that was that my limbs felt like they were gasping for air, the same way my lungs would. Due to neurological upset caused by spirochetes in my brain, my muscles would also twitch (sometimes, when I am especially tired, they still do). It can be a mild twitching, or it can be more of a focal seizure, where that whole area of my body jerks against the bed. For me, these twitches can be an indication that I need Vitamin A1, but only your LLMD can determine the cause and treatment of yours.


jennifer crystal

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 jennifercrystalwriter@gmail.com

sonya rolin

Lyme’s Life Lessons: Sonya Rolin and Tatiana Donald

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 sufferers—in addition to many physical symptoms— to endure depression, anxiety and a sense of hopelessness. The unending effort to embrace the hope that a better, more empowered life lies ahead can feel Sisyphean.

Nevertheless, despite its challenges, Tatiana Donald (pictured with her mother, Sonya Rolin), now 25, who experienced the lowest of lows as a result of being bitten twice by infected ticks—first as a child and again as an adult—has managed to emerge as a person who now says “being sick taught me a lot about empathy. I also learned I have grit.”

Tatiana was first diagnosed with Lyme when she was 12 and living in Greenwich, Connecticut. She rode horses six days a week and believes she developed Lyme from a horse carrying a tick. She was given antibiotics, but suffered a severe reaction to them, which put her “down and out and in bed” for several months, she said. But then her Lyme disease went into a dormant stage, which it can do for years without creating symptoms.

Looking back on her life, Tatiana senses the anxiety and moodiness she experienced in the years that followed may have been due to Lyme’s lingering effects. Yet she was, as she puts it, “treatment resistant” and in 2010 she headed off to the College of Charleston in South Carolina. “I felt normal, worked hard, and consistently got 4.0 grades,” she said. “But in her junior year she started to experience gastrointestinal problems.

“I was vomiting all the time,” she said, “and even had a colonoscopy, which is unusual for a 20-year old.” Naturally, as is often the case with Lyme, the doctors were unable to figure out what was wrong. By the spring, her health problems seemed again to disappear and she was back to “pushing myself hard.” But she paid a price for being so hard-driving. By the end of her senior year, she said, she was “falling apart” both emotionally and physically.

lyme warriorTatiana attributed her health problems to stress, which can hurt any of us by depressing the immune system. She didn’t consider Lyme might be the culprit. “I didn’t connect the dots,” she said. “I had blinders on.” After graduating magna cum laude, she rested for a month and then took a job in marketing. Although she felt “tired and lethargic” she didn’t recognize something was seriously wrong until one day—to her horror— she found herself lost on a familiar street. She texted her boyfriend that she didn’t know where she was. They would soon learn that Lyme had announced itself again and Tatiana was experiencing “a full-on” relapse.

“It’s a complicated disease that’s very, very difficult to cure,” said Sonya Rolin, a successful fashion designer turned real estate business owner. “Because Lyme can affect the brain it comes with a lot of depression and anxiety, memory loss and mood swings.”

What followed for Tatiana were many trips from South Carolina to New York, often with her mother, for treatments. “Lyme doctors are few and far between in Charleston,” said Tatiana. When her boyfriend got a job in Connecticut, they moved to the state together and Tatiana continued her treatments, but she was unable to work. She made progress and in the summer of 2015, she had a PICC line put in for antibiotic administration.  Twelve days later she developed a blood clot in her neck and had to go to the hospital.

Like too many other Lyme sufferers, Tatiana and her mom visited a veritable host of different doctors and tried various alternative treatments to help her get better. “It’s not like a cold,” she said. “You aren’t going to get better by pushing through it.” Throughout her Lyme journey she also experienced the social isolation suffered by many with chronic illnesses—from losing friends to being confronted by those, including some family members, who would not believe she was suffering from a verifiable illness and thought it was all in her head.

“You learn who is there for you in good times and in the less good times,” she said. “I also learned that having Lyme is nothing to be ashamed of. I am not my Lyme infection, even though Lyme takes over so much of my life.”

Tatiana had been making progress with her treatments until about six months ago when she learned she had been re-infected by a second tick bite. “It’s unlikely,” she said, “but it can happen.”

She took this news stoically. “I have definitely learned that I have a keen ability to persevere,” she said. Rather than focusing on despair, she has been thinking about the future. “I’ve never been fully Lyme-free as an adult,” she said. “I’m interested in meeting a version of my adult self without Lyme and seeing what she’s like.” Tatiana says she’s thankful for the ways that her Lyme journey has helped her grow as a person. “It’s taught me about self-care and wellness, the importance of knowing what to eat, and being more open and empathetic with others generally.”  Moreover, “I know what it feels like not to be believed.”

Both Tatiana and her mother are looking forward to serving as co-chairs of Global Lyme Alliance’s Greenwich Gala this weekend. “It’s exciting to see how much money is being raised for Lyme research,” Tatiana said, “but it’s also wonderful to share the human connection with those who have been dealing with this illness.” Echoed mom Sonya: “I hope the Gala gets more people involved in this urgent cause. So many people are misdiagnosed and suffering unnecessarily for years. My heart goes out to them. I want to do whatever I can to help.”


The Greenwich Gala is a major fundraising event for GLA. It will be held Saturday, May 12, 2018 from 6:30 p.m. until midnight and features a cocktail reception, dinner, dancing and both a live and silent auction. To purchase tables or tickets, please visit GLA.org/2018CTGALA or call 917-242-1817.

 

womble

A Mother and Daughter’s 12-Year Quest for Answers: Astrid and Christina Womble

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 (pictured), who remembers being bitten by a tick 12 years ago, is so quick to say: “I know I am so incredibly lucky. My mom has continuously fought for me for all these years.”

Christina’s mother, Astrid, has believed in—and fought for—her daughter Christina all her life. Astrid, a Greenwich, Connecticut mother of five, watched as the then 10-year old Christina first began to suffer recurring sinus infections, fevers, and inexplicable weariness. With time, Christina ’s symptoms intensified with a confusing array of alternately relapsing then remitting multi-systemic ailments.

Astrid and Christina Womble
Astrid and Christina Womble

Listening to what Christina, now 22, has gone through is positively heart-wrenching. Over the years she has suffered from a tsunami of symptoms including night sweats, memory problems, blackouts, partial paralysis, digestive issues, unremitting fatigue and severe insomnia. Many times she fell behind in her school work or had to leave school altogether, though she struggled from home to keep up. “I was constantly drowning in a sea of coursework extensions,” she said. Teachers and peers questioned whether she was really sick. She was diagnosed with mononucleosis four times. At one point her legs were so numb that she was unable to walk.

When she was In high school—Christina had been an avid tennis player who also enjoyed ice hockey and lacrosse—she began to suffer from recurring stress fractures in her legs (ultimately 37 of them). Sadly, she then had to give up the sports she so loved so much. “When her sports were taken away from her,” said Astrid, a Dartmouth graduate with a JD/MBA degree, “it was like taking her identity away.”

Christina was tested for Lyme disease a number of times but each time her test came back “negative.” As she struggled for answers, she occasionally questioned herself, wondering “Am I crazy? Am I lazy?” Yet Astrid, now the irreplaceable caregiver, believed something was seriously wrong with her daughter’s health and was determined to find its cause. They went from one doctor to another without resolution. A raft of medical professionals—from internists to naturopaths—suggested diagnoses ranging from adrenal fatigue and hormonal growing pains. Others repeatedly told Astrid  that Christina’s problems were all “mental.”

“I was crushed,” said Astrid, “by how many expensive, smart doctors looked us in the eye and said there was nothing was wrong with her. It made me question both myself and my daughter. At my lowest point, even Christina’s father thought I was making excuses for her.”

With sporadic successes, sometimes stretching for extended periods before symptoms returned, Christina tried supplements, homeopathy, IV treatments, and other alternative protocols. She attended the University of Texas at Austin for two years, but had to drop out because she was so sick. It wasn’t until the fall of 2017, after her seventh Lyme test, that she finally got her answer. Christina received a positive result for Lyme as well as five tick-borne co-infections—including babesia, bartonella, and mycoplasma—each of which has its own treatment protocol.

“The day I got a diagnosis I was so happy,” Christina said. However, her Lyme struggles are far from over. After a year of IV antibiotics through a port, Christina is beginning to restore her life. “She still has her ups and downs,” said Astrid. “But the doctor says she’ll need about two more years of treatment before she feels really good.”

Today, Christina, an amazingly positive and determined individual, is focused on living in the moment, rather than dwelling on the past. “I don’t need to feel bad for myself,” she said. “Having a large family, my siblings have been my support system and I have a mom who is the most incredible, most empathetic person I know.”

Christina now attends Georgetown University in Washington D.C., where she is taking a modified schedule of three classes. She is preparing to deliver a talk on May 31 at the Nantucket Project in Greenwich about her journey with Lyme and the tick-borne co-infections. She hopes to eventually deliver a TED Talk.

Christina and Ella Womble

In the meantime, it’s her turn to help support Astrid, who was herself diagnosed with Lyme this past November and is undergoing oral antibiotic treatment expected to last at least a year. “I was never so shocked in my life as when I learned I had Lyme,” Astrid said. “I was feeling incredibly exhausted, but I thought it was just life.” Also suffering from Lyme is Christina’s 12-year old sister, Ella, who was diagnosed in March and has been suffering from exhaustion, body-wide eczema, severe muscle and joint pain, blackouts and concentration problems. Ella is now on medical leave from school due to her inability to make it through the day. “It’s a lot of stress for her,” says Astrid. “She feels very socially isolated as a result of this disease. She cries all the time.”

Both Astrid and Christina are angry—so angry at a disease that has taken so much from the life of their family.  “Lyme patients have been abandoned by the medical profession,” said Christina. “So many people are suffering because doctors are set in their ways, don’t keep up with new research and don’t look at how everything in the body is interconnected. They are unwilling to recognize that they may be wrong. Instead, a lot of Lyme sufferers are brushed off by doctors like I was.”

Astrid and Christina Womble, 2017 GLA Greenwich Gala

The mother and daughter are co-chairs at Global Lyme Alliance’s May 12th Greenwich Gala. Both women feel their participation in the Gala is their way it’s a way of turning their troubling encounters with Lyme into a positive for themselves and others. “It’s shocking how long it took us to get a diagnosis for Christina,” said Astrid. “Now more than ever, we need to raise awareness and funds for research for a better diagnostic test and ultimately a cure.”

“So many people are suffering,” she added. “Five people call me every week asking for the names of doctors. I tell them that if you suspect you might have Lyme, go to a Lyme specialist right away. Our current model of specialized medicine is wonderful at treating specific issues, yet lacks the ability to look at a person holistically and consider why this  person has so many issues.”

For her part, Christina says she wants people who don’t have Lyme to know what it can do to an individual and to a family. “We need to erase the stigma of Lyme,” she said. “I want to make people angry that such a sorry situation exists. I also want Lyme patients to learn that they are not alone. There are so many of us. We are all like one big team and we can make a difference.”

The Greenwich Gala is a major fundraising event for GLA. It will be held Saturday, May 12, 2018 from 6:30 p.m. until midnight and features a cocktail reception, dinner, dancing and both a live and silent auction. To purchase tables or tickets, please visit GLA.org/2018CTGALA or call 917-242-1817.

stephanie ercegovic

A Mother, A Supporter, A Lyme Warrior: Stephanie Ercegovic

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 she sought treatments for the mysterious illness affecting her 13-year old daughter.

Her daughter had suddenly gone from being healthy, “super-athletic and full of energy” to suffering from an alarming number of problems that included a painfully inflamed shoulder, unremitting sleep difficulties, severe anxiety, and digestive issues. Ercegovic and her husband consulted doctors in Connecticut and New York but none were able to determine what was wrong.

It goes without saying that when a child is chronically ill, the whole family feels the pain. “It’s been a nightmare for my daughter,” said Ercegovic, a Westport, Connecticut resident, “a nightmare for everyone.”

Living in Connecticut where Lyme disease is endemic, you might wonder why doctors did not immediately suspect that the teen’s problems were caused by the tick-borne illness. As it turned out, Ercegovic’s daughter was tested twice for Lyme, but after both tests were negative—even though such tests are only 50% accurate—doctors ruled it out. As a result, she was shuffled off to numerous specialists, while the Lyme infection became more disseminated throughout her body and more difficult to treat.

“We went from place to place, searching for answers,” said Ercegovic, president of Discovery Capital Management, a South Norwalk-based hedge fund. “She had MRIs and nine months of rehab for her shoulder with two different orthopedists. The second doctor finally concluded that they couldn’t find anything wrong with her and it must be inflamed since her shoulder was ‘hot to touch’ and she should not carry anything more than five pounds. We visited ear, nose and throat specialists; pediatricians; and allergists as her body was developing new and significant food allergies every two to three months with no known cause.”

Fortunately, an answer came after Ercegovic watched a close family friend—Robyn Carpenter, who last year served as a co-chair of Global Lyme Alliance’s (GLA) Greenwich Gala—go from being “healthy and active to having her knee swell up massively and being unable to walk.”

At one point Carpenter was being treated for rheumatoid arthritis and she was told she even needed surgery, only to finally consult with a Lyme-literate doctor. He helped her navigate the path from illness to wellness by correctly diagnosing her with Lyme. As they saw Carpenter steadily improve after four months of care, Ercegovic’s husband wondered if his daughter might actually have the tick-borne illness. They met with Carpenter’s doctor and soon learned their child not only had Lyme, but was also suffering from a tick-borne co-infection, Bartonella, which can cause troubling neurological symptoms.

greenwich gala 2018
GLA CEO Scott Santarella with Greenwich Gala Co-Chairs Sonya Rolin and Stephanie Ercegovic (Co-Chair Astrid Womble not pictured)

Today, after being treated for a year, her 16 1/2 year old daughter is much better, but she can no longer tolerate antibiotics and her symptoms linger. Ercegovic, a Lyme Warrior if there ever was one, still searches for treatments that will help her child.“I’m a huge advocate for doing whatever I can,” she says. Taking a moment to reflect, Ercegovic says childhood should be a time of joy and exploration, but that “this disease has literally destroyed my child’s childhood.” The biggest issue that remains for her daughter, she says, is ongoing sleep problems that leave the teen exhausted, fatigue draining every ounce of energy from her body and making if difficult for her to stay focused, study, or get organized.

To make matters worse for Ercegovic, as she learned more about Lyme’s effects, her husband realized that he had Lyme, which was previously diagnosed as “arthritis in his hands and hips” and he too is undergoing treatment. Then last summer, she relived the nightmare of her older daughter’s Lyme when her younger child went for her annual pediatric physical and the pediatrician found a “red oval” rash on her back. “I found myself saying ‘Oh my god, oh my god. It’s a tick bite!,” Ercegovic recalls. “I was freaking out!” Recognizing that chances were good it was Lyme, she was taken aback when the pediatrician questioned whether it really was the tick-borne disease since it wasn’t the exact shape of a bulls-eye, the tell-tale sign of the disease which only manifests in some cases. “We left that office, got in to see the Lyme doctor the next morning and started treatment the same day, ” Ercegovic says.

Over three years, Ercegovic has had a crash course in what so many Lyme sufferers endure. She has seen how difficult it is to get an accurate diagnosis and find effective treatments. She has watched her teenage daughter suffer from an illness and its co-infections that traumatize the mind and spirit. Like others, her daughter must struggle against the invisible enemy inside of her. “My experience has been eye-opening,” she says. “I used to think that if you were diagnosed with Lyme, all you needed to do was take antibiotics and you would be fine. I didn’t know that spirochetes can hide in cells and even have a neurological component. It was all new to me.”

Her new-found awareness has made her determined to speak out and help others. Not only is she one of the Co-Chairs of GLA’s 2018 Greenwich Gala being held next month, but she says she plans to remain actively involved in GLA. “I’ve learned more from the mothers in this organization—what they’re doing and not doing to help their children—that it’s been amazing.”

Ercegovic says she is particularly eager to help alarmed mothers who search for answers when their children develop symptoms that doctors can’t explain. The first thing she tells a parent with a child who isn’t acting normally is to look for Lyme. “I tell them this is a real disease and they have no idea the damage it can cause,” she says.  I also tell them to find a doctor who knows Lyme. Think of it this way: If you have breast cancer, you aren’t going to go to a GP. You’re going to go to an oncologist, a doctor who specializes in cancer.  The same thing goes for Lyme disease. If you suspect Lyme, you need to see a doctor who deals exclusively with Lyme and tick-borne diseases.” For help in finding a Lyme-literate health provider, go GLA.org.

Ercegovic is looking forward to next month’s Gala and says she hopes it raises significant funds for researchers to continue their work of developing a highly accurate diagnostic test and better treatments. “Research is the key,” she said. “I’m hoping that research focused on detection and treatment will make a difference for other people and show them there is real hope.”

The Greenwich Gala is a major fundraising event for GLA. It will be held Saturday, May 12, 2018 from 6:30 p.m. until midnight and features a cocktail reception, dinner, dancing and both a live and silent auction. To purchase tables or tickets, please visit GLA.org/2018CTGALA or call 917-242-1817.

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

EVERY COUPLE MONTHS, LYME WARRIOR JENNIFER CRYSTAL DEVOTES A COLUMN TO ANSWERING YOUR QUESTIONS. HERE ARE HER ANSWERS TO QUESTIONS SHE IS FREQUENTLY ASKED.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

Since blood tests aren’t 100%, how can you be definitive you have Lyme?

Lyme disease is difficult to diagnose for exactly the reason you describe: there is not yet a reliable test. This is because current tests look for antibodies for Lyme in your blood, rather than for the bacteria itself. Western Blot tests from labs like Igenex are more sensitive, looking for a larger spectrum of bands than the standard CDC test, but Western Blot tests are still not fool proof. The best way to know if you have Lyme is to get a clinical diagnosis by a Lyme-Literate Medical Doctor (LLMD), who will look at your complete medical history and symptoms.

In our society we tend to think tests are the only way to diagnose disease, but it’s important to remember that doctors diagnoses lots of illnesses—like colds, sinus infections, and the flu—without tests. We trust their expertise in those areas and we have to do the same with Lyme, as long as the doctor is Lyme literate. My CDC tests did come back positive—for Lyme and co-infections babesia, and ehrlichia—but it was my doctor’s clinical expertise that made me sure of my diagnosis.

The other way you can tell you if really have Lyme is based on how you react to treatment. If you experience a Jarisch-Herxheimer reaction, when you feel worse before you feel better because the antibiotics are killing the Lyme bacteria faster than your body can eliminate them, then you know the spirochetes really are there.

The CDC states that laboratory tests are “helpful” in diagnosing Lyme, but not definitive. The best thing you can do is find an LLMD whom you trust. Had I not found an LLMD to diagnose and treated me accurately, I would still be bedridden.

 

I had Lyme years ago, and now I think I have a new infection. If my blood tests come back positive, how will I know if that’s an old or new infection?

Blood tests look for two different types of antibodies: Immunoglobulin G (IgG) and Immunoglobulin M (IgM). IgG are longer-term antibodies that are produced later and stay in your system after you’ve had an infection. If you had chicken pox as a child, you still have IgG antibodies for chicken pox. IgM antibodies are produced more immediately, and represent a new, acute infection. Since you had Lyme before, you will still have IgG antibodies for it. If you show IgM antibodies, however, that’s a sign of a new infection. Your LLMD will be able to differentiate between the two.

That said, after a tick bite, it can take your body awhile to build up enough antibodies to produce a positive blood test. For that reason and for the reasons outlined in question 1, it’s important for you to see an LLMD who can evaluate whether your symptoms are a sign of new or recurring infection, and also whether you have new or recurring co-infections.

 

What helps most with low blood sugar?

Lyme disease can impair adrenal function, which in turn can cause reactive hypoglycemia (blood sugar swings). This is also a common symptom of babesia. Hypoglycemia was one of the first symptoms I experienced. Shortly after finding a strange red rash on my forearm, I fainted one day due to low blood sugar. This had never happened to me before. I continued to have low blood reactions at inopportune moments for years. Though doctors confirmed I was hypoglycemic, they never looked into why I’d suddenly developed it. Had they, my tick borne illnesses might have been diagnosed much earlier.

Now that I have an accurate diagnosis and have been treated, my hypoglycemia is better, but not gone. There are a few things that have helped me the most. The first is sticking to a gluten-free, sugar-free diet. This has helped my blood sugar stay more stable, with the added bonus of keeping intestinal yeast overgrowth at bay.

I try to limit carbohydrates like bread and pastries (even the gluten-free, sugar-free kind, because they still cause a quick rise and then drop in blood sugar) and instead eat whole grains like rice and quinoa. I’ve found that it helps to have protein and complex carbohydrates at every meal and snack. The protein gives me sustained energy; without it, my blood sugar will crash an hour or two after the meal. The carbohydrates fill me up and raise my blood sugar to a healthy level; without them, I feel nauseous and lightheaded.

I know when my co-infection babesia is flaring up because in addition to air hunger  (feeling like my body isn’t getting enough oxygen), exertion fatigue and headaches, my blood sugar crashes more frequently, and I have bouts of lightheadedness. I’ve found that during these times it helps to eat meals rich in iron. A steak and a big bowl of spinach can make a big difference. Cinnamon is also a great blood sugar stabilizer. Try sprinkling some on steel cut oats with protein powder for breakfast.

Finally, I recommend always having snacks on hand. You never know when you’re going to get stuck in traffic and your blood sugar will drop. I always carry a granola bar and a box of raisins in my purse, and I keep a juice box (made with 100% juice and no added sweeteners) on my nightstand, for those pesky middle of the night crashes.


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 atjennifercrystalwriter@gmail.com

heidi buono lyme warrior

A Lyme Warrior Bites Back

Heidi Buono wants others to have a fighting chance against Lyme disease. She is raising awareness about Lyme and other tick-borne diseases through her “Bite Back Against Lyme Run-Walk” in Albany, NY.

 

Nine years ago, on Halloween night, Heidi Buono received the scare of her life.

Although she had suffered from migraines and achey stiff joints in the past, she had simply dismissed her ailments as signs she was getting older. But that Halloween, she suddenly experienced fatigue so overwhelming she was unable to get off her living room couch. As Buono’s symptoms worsened in the days and weeks that followed, she underwent countless medical tests, but these all turned out negative. She couldn’t find a doctor near her Albany, NY home who could help her resolve the mystery.

Barely able to walk or talk and unable to care for her three children, the distraught Buono and her husband scoured the internet for answers, eventually finding a Lyme-literate physician two-and-a-half hours away who diagnosed her with late-stage Lyme and other tick-borne co-infections.

Heidi Buono with her daughter
Heidi Buono, pictured here with her daughter

In the years since, life hasn’t been easy for Buono. All three of her children were diagnosed with Lyme and like most tick-borne disease sufferers their ailments come and go. Not quite three years ago, Buono’s mother—who had been suffering from chronic Lyme—passed away suddenly. With all the upheaval, Buono then suffered a serious Lyme relapse. She gave up her job as a life coach for special education teenagers and moved the family to a new home with a smaller lawn, hoping to reduce their exposure to ticks.

Now Buono is more determined than ever to make something positive out of her struggles. “I really feel it’s my mission in life to help those who are suffering from Lyme disease,” she says. “When someone mistakenly says that Lyme isn’t a big deal, I’m happy to stand up and set them straight about this debilitating illness.”

To raise public awareness about Lyme and other tick-borne diseases, Buono is organizing a “Bite Back Against Lyme: Albany Run-Walk” to be held Sunday, September 10 at The Crossings of Colonie, in Loudonville, NY. Proceeds from the event will benefit Global Lyme Alliance, the nation’s leading nonprofit dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness.

bite back against lymeThe 5K run is open to all ages and abilities and will start at 11 a.m. inside The Crossings of Colonie park and a 1.5 mile walk will follow. Registration for all will open at 9:30 a.m. The Race will cover a flat 5K loop on designated routes, ending back inside the park. The event will be held rain or shine.

Individuals can pre-register for $35 each; families (up to six participants, same household) can pre-register at the family rate of $100. Registration on the day of the event is $40 for individuals and $105 for families. Participants who pre-register by September 1 will receive a free t-shirt.

Buono has organized similar Run-Walk events in the past, most recently in 2014. But today she feels it’s more important than ever to speak out about the danger of Lyme. “Unfortunately,” she said, “even in upstate New York where Lyme poses a very great risk, people—including doctors—don’t seem to get it.” This worries her. “My son’s friend found six ticks on himself, but when he went to the doctor, he was only given two antibiotic tablets—not enough to treat anything, much less early Lyme or other tick-borne illnesses.”

The event plans call for Dr. Holly Ahern—a microbiologist at SUNY Adirondack and co-founder of the Lyme Action Network—to speak at the event.  Albany Massage therapists will offer free massages and there will be plenty of free snacks and bottled water. There will also be a raffle and a gentle Zuma pre-workout.

“We’re excited about this upcoming event,” said GLA CEO Scott Santarella. “In addition to raising awareness and funding—both so important to help fight Lyme and other tick-borne diseases—Heidi’s event will provide an opportunity for those who’ve been affected by these illnesses to come together and find a sense of community and common purpose. Bite Back Against Lyme is all in the cause of finding an accurate diagnostic test, effective treatments and ultimately discovering a cure for devastating tick-borne diseases.”

Learn more about Bite Back Against Lyme Run-Walk: register or email Heidi.

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she is frequently asked.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

You’ve written about relapsing. How long does it take for a Lyme patient to relapse?

Many Lyme patients continue to feel well after stopping treatment, and my hope for them is that they will never relapse. But if Lyme disease is not fully treated, leftover spirochetes can start replicating, causing the infection to flare up again. While this can happen out of the blue, it is more often triggered by compounding issues such as stress or another acute infection. Stress releases cortisol in the body, which lowers immune function.

When the immune system is compromised, it is less capable of fighting leftover spirochetes. For some people, this happens right away—(usually signaling that they weren’t treated long enough)— while for others it happens months or even years later. If the body doesn’t have other defenses protecting it, such as antibiotics or nutritional and homeopathic supplements, and there is even one spirochete left, that spirochete is free to multiply at any time. For me, it took six months after stopping treatment to relapse. By then, I had moved and started a new job, and was in over my head physically, mentally and emotionally. My doctor said all the stress I was under was like “walking into a minefield of ticks.” Now, I stay on low-dose treatments to keep myself in remission, and I have not relapsed in ten years.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide when you are ready to stop treatment and how you should continue to protect your immune system once you do.

What is the best test for Lyme disease?

Unfortunately, there is not yet an accurate and reliable test for Lyme, but Global Lyme Alliance is supporting research towards one. Current Lyme tests are indirect, meaning they only look for antibodies against the infection, not for the Lyme bacteria itself. It can take the body a while to generate antibodies, causing false-negative tests. The most common test is the two-tiered Western Blot and ELISA test, which is only 50-70% accurate. Some labs like Igenex do more sensitive testing, reading more bands for Lyme on their Western Blot than the standard CDC Western Blot. They also test for two strains of Lyme bacteria, called B. burgdorferi, rather than one. Other tests are the polymerase chain reaction assay (PCR), which detects the DNA of the Lyme bacteria drawn from a joint (usually the cerebrospinal fluid) and the C6-Peptide test (for more information on testing, click here).

Because testing is so inaccurate, both the Centers for Disease Control and Prevention (CDC) and the International Lyme and Associated Diseases Society (ILADS) note the importance of a clinical diagnosis, which can only be done by an LLMD. My tests were CDC-positive for both long and short-term infection, but I also had a thorough clinical assessment by an LLMD.

Do you know if muscle atrophy and nerve damage can be regenerated after Lyme treatment?

This is another question that varies per patient, but I can tell you that I personally was able to heal from both. I had very serious cases of Lyme, Babesia, and Ehrlichia that crossed the blood-brain barrier. A SPECT scan showed lesions on my brain and inflammation that blocked the left side from getting adequate oxygen. My muscles atrophied to a point where my previously rock solid ski legs jiggled like Jell-O.

Recovery was slow and unsteady, and did not happen solely due to antibiotic and antimalarial treatment; it also took a lot of work on my part. I had to really rest my brain while I was going through treatment, not pushing it to watch TV or read when those activities gave me brain fog. I had to learn my limits, pulling myself away from stimulating activities before I became overwhelmed. I still have to enforce limits today. I used to get paroxysmal limb movements—twitching of my nerves and limbs—and while that still happens occasionally when I am overtired, it is far less frequent than it used to be.

I worked assiduously at physical therapy to regain my muscle strength, but not until I had completed enough treatment to really be ready to exercise. Then I started very slowly: thirty seconds on a stationary bike. I worked up to a minute and thirty seconds, only to get a migraine and wind up back in bed for a week. Eventually, over the course of many months at physical therapy and many years on my own, I have improved to a point where I can now spend a morning skiing, paddle boarding, or canoeing. I recently kayaked three miles on the Boston Harbor. I still have to rest after I exercise and am no longer skiing moguls for eight hours a day, but I am also not as young as I once was. Nevertheless, I am happy to report that my rock solid muscles are back.

In addition to medicine and physical therapy, neurofeedback and integrative manual therapy helped me to regain cognitive and physical function. Don’t give up hope!


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 jennifercrystalwriter@gmail.com

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 it’s one of the strongest you’ll ever meet. It had to carry so much and it fought so hard for you. Never forget that progress is a slow process.

Please don’t ever feel guilty again of not being the perfect friend, girlfriend, daughter or employee. You are not your disease. You’ve tried more than everything to keep up with life, but in the end, you lost. You fought an incredible battle. But a setback is just a set-up for a comeback. And one day, you will be winning again. You’ll proudly show your scars and scream “I’ve survived”.

Please don’t ever feel ashamed again, for not remembering things and asking questions when you should already know the answers. Memory loss is part of the disease, and some day your brain will function properly again. Remember that the people who love you, don’t blame you. So why blame yourself?

Don’t compare yourself to the girls who post sunny holiday pictures with the cutest outfits. When these girls wore sunny outfits, dresses, daisy dukes and high heels, you wore sweatpants 7 days a week. And you know what? That is okay. Really, it is. Your time will come too, and then you’ll feel confident and maybe even sexy. And you’ll buy all the dresses you can dream of. And the shoes too, of course.

Don’t accuse yourself of being difficult to love. Don’t you dare tell yourself that ever again. There is so much to love about you. When you feel hate for yourself, you are actually hating Lyme disease. But there is more to you than that. You are loyal, giving, generous and have such a big heart. Even with this debilitating disease and unreal medical bills, you still support people you love and give a lot to your family. And almost never ask for anything. Your soul is pure and your intentions are always good. Don’t blame yourself for the negative thoughts, but learn to understand that they are a part of this process. There will be a day when you will tell your mind to shut up when the bad thoughts will come again. You will beat this negativity. Yes, you will.

Don’t hate yourself. Stop hating your body. Your legs carried you through the hardest parts of your life. Your arms are strong. Yet they are also soft and can be used to cuddle and hold the ones you love. When you’re finally able to workout again, it will feel like the biggest victory you’ll ever know. I promise you that if you learn to appreciate yourself, your body will glow again. The scars will be evidence that you have won the fight. Celebrate the future and be thankful.

Please forgive your former friends for not being able to understand what it really means to be sick. They simply cannot empathize with you, and their lack of trying doesn’t mean they are bad people. It just means that life got in the way. Take it as a lesson learned. Now you know who really has your back. If you dare to let go, life will reward you with new people who will see the good in you when you feel lost or disoriented.

Please get rid of the idea that you can never thank your loved ones and friends enough for putting up with you. It’s not necessary to give them money or gifts. Remember that they support you because they choose to. Cherish them, and pay them back with love and unconditional friendship, because that is more than enough.

This is not your fault. Lyme disease is not your fault. But ten years ago, this stupid tick bite happened to you. Since then you’ve lost control over your body and life. If you blame yourself, please remember the tick bite and try to blame the tick. Quit being impatient, pat yourself on the back and remember how far you have come. You can do this. Hell yes, you can.


Opinions expressed by contributors are their own.

Bonnie van Geffen is a 29-year-old Lyme warrior from The Netherlands. She has experienced symptoms for many years but was officially diagnosed with Lyme disease a few years ago. After her initial treatment, Bonnie’s symptoms have now returned.

Determination Through Despair: A Lyme Warrior Speaks

by Susan Pogorzelski
#MyLymeLife

From one Lyme warrior to another.

 

I’d be lying if I said this wasn’t a difficult time. I’m still struggling to recover from this disease—the raw feelings surrounding this daily battle are documented regularly on my blogs and across social media. I’m still reaching out to Lyme patients and trying to find new ways to connect and provide emotional support and friendship to those who are suffering from this isolating illness. I’m still trying to grow my own business so I have some means of financial support, even though I’m only partially functioning and never have any consistency. I’m still trying to write my novels—my passion—in the rare moments when the fog in my mind clears. I refuse to let Lyme take that away from me, too.

But I’d be lying if I said it was easy to keep holding on.

There’s so much more to Lyme disease that most people can’t understand unless they’ve experienced it themselves. It’s not just the physical symptoms that make life impossible —it’s the emotional. It’s the financial. It’s the burden under which we’re forced to bend until we break. And boy, do we break. If anything, Lyme teaches us resilience. But how many times do we have to break down and build ourselves back up before it all becomes too much?

Sometimes this disease feels impossible. Too often, we walk in darkness.

I need to stop speaking in the abstract. That doesn’t help anyone. So here’s the truth of my Lyme disease: Even as I continue to get better, the bills add up. Medicine and doctor visits are all out of pocket and expensive—and that’s just for the oral antibiotics which I’m taking. I’m waiting to get a disability hearing, but that won’t be scheduled until 2018. In the meantime, I need some financial relief until I can go back to work without worrying that I’m either jeopardizing my health or that I won’t lose whatever job I do get because I have good health days, but they’re always followed by bad weeks.

I’m on government assistance. I’m relying on my family to get me through each month, placing an even bigger financial burden on them. Come August, if nothing changes, I’ll have to sell my house. In the meantime, I’m trying to build up my editing and writing business and do odd jobs so I’m able to earn some income. I’ve always believed in working hard for what you earn. But those jobs are hit or miss. It never feels like enough.

I try to be positive and live in gratitude because I have way more than some, and I recognize that. But every day is a struggle. Every single day. And the worst thing about it is that my story is all-too-common.

This is why I advocate so strongly for Lyme patients. Because we live in this hell for years and years, and if I can help prevent the suffering of just one person—if I can show them they’re not alone—then maybe I’m still here for a reason. Some days, though, it’s hard to tell.

I don’t mean to be so blunt. I don’t mean to sound so weary. But the truth is, I’m tired. I’m tired. I’m so damn tired.

I don’t like people to see this side of me—this side that’s depressed and anxious about her future, whose desperation screams so loudly, I begin to wonder if I even have one. I don’t like others to see this side of me because it’s not indicative of who I really am.

I’m the girl who is strong and brave and formidable in the face of adversity. I’m the girl who strives to help others rise in the face of their own battles, who offers hope in times of darkness because she believes hope can light the world. I’m the girl who faces obstacles with resilience and accepts challenges in stride, persisting despite resistance.

But sometimes I’m also this: Lonely. Scared. Defeated.

This week, I was the girl who sank so low into darkness, she didn’t think she’d ever find her way back out. I was the girl who lost her empathy and ability to cope, who pushed away loved ones, who lashed out at the hands that tried to help her rise from this dark corner. I was the girl who sank to the kitchen floor and curled up near the cabinets, sobbing because she couldn’t see a way forward, a way past this pain.

“I can’t do this. I can’t do this. I don’t want to do this anymore.”

How many times have I said those words? But I’m still here. I am still doing this. Because there is no choice. I can’t support others on this journey if I’m crumbling under the weight of my own.  So I’ve learned to keep picking myself up. I focus on the victories. I reassemble the pieces that fall apart. I fight to keep shedding light on the dark corners of the world even though my own world feels dark because the fire inside me refuses to go out.

I refuse to let it.

Little by little, the light I strive so hard to cast for others spreads to myself, and I bask in its glow for a while. I’m starting to learn how to do that, too. But it’s hard to keep that light there when this disease has shadowed you for so long. It’s hard to keep going when you don’t know where this ends.

All I can do is make a promise myself and to you. I’ll keep going. I’ll keep picking up the broken pieces. I’ll keep trying to shape them into something useful, something beautiful. I’ll keep casting light on all those dark corners of this disease. And I’ll keep trying to remember that I can walk in that light myself.

I promise I’ll keep fighting for you, for me, for us. I won’t stop.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she is frequently asked.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

I started treatment for Lyme, and now I feel worse! Is this normal?

Yes. As strange as it may sound, this is actually a good sign. It means the medication is working. What you’re experiencing is called a Herxheimer reaction: the antibiotics are killing off bacteria faster than your body can eliminate them, making you feel worse before you feel better. While Herxheimer reactions—often referred to as a “herx”—are tough to deal with, they usually don’t last too long. The first time I had one, my doctor told me to “stay the course”, and I’m glad I did. If your herx is unending or unbearable, you may want to talk to your doctor about “pulsing” your antibiotics—taking short breaks from them, or changing them.

I have mostly had neurological symptoms, but now I suddenly have fatigue and joint pain. Why did that happen?

Lyme bacteria, called spirochetes, are tricky. They spiral away from antibiotics in an effort to evade the treatment. This means they might burrow into new places, or they might move deeper into places they’ve already been. Without antibiotics, though, the spirochetes will eventually get to all those places and then some, without anything fighting them off. Eventually the antibiotics will win out, but in the meanwhile, you may experience new symptoms. Fatigue is especially common, because your body is laden with bacteria that is being killed off (a good thing!), and because your body is working so hard to fight the infection.

Spirochetes also love to hide out in scar tissue. If you’ve had an injury to a particular joint, you may feel more swelling or pain in that area than others. I tore my ACL a few years before I started Lyme treatment. The rehabilitation took much longer than expected because Lyme was living in the scar tissue around the knee. I’ve also had intense migraine headaches over my left eye. I had several surgeries on both eyes as a child, and my doctor suspects I have more scar tissue around the left, causing focalized pain.

Be sure to tell your doctor about new symptoms—especially if you develop neurological impairments that you never had before, as this could be a sign that the infection has crossed the blood-brain barrier. It helps to keep a daily log so that you can track your symptoms and accurately report them to your doctor.

I have spoken with many people with chronic Lyme disease who were on years of antibiotics and did not do well until going a natural route. Do you think it’s possible to treat Lyme disease without antibiotics?

My short answer is no. The long answer is that everyone has a different experience and reacts differently to treatments. Some people only get well with antibiotics. Some people start on antibiotics and then add or switch to naturopathic treatments. As I’ve said in the past, it all depends how long a patient went undiagnosed, whether their Lyme is complicated by co-infections, whether the infections have crossed the blood-brain barrier, and how a patient’s immune system responds to various treatments. Only you and your Lyme Literate Medical Doctor (LLMD) can decide the best course of action.

In my experience, the naturopathic route alone did not treat Lyme. For me, it took a combination of Western and Eastern modalities. Lyme is a bacterial infection, and antibiotics kill bacteria. I would not treat other bacterial infections, such as pneumonia or a urinary tract infection, solely with naturopathic remedies. I apply the same theory to treating Lyme. I take homeopathic supplements to help boost my immune system, replenish nutritional depletion, and augment the work of pharmaceutical medication. I also rely on adjunct therapies such as neurofeedback and Integrative Manual Therapy.

However, none of these therapies would have helped on their own. Before being diagnosed with Lyme, I was seeing a naturopathic physician who treated me with Chinese herbs, dietary restrictions, and acupuncture. After two years of these treatments, I showed only nominal improvement. That was because there was an underlying bacterial infection that wasn’t being adequately treated. It was the naturopathic physician who recommended I see a Lyme specialist; he knew he’d maxed out his ability to help me, so he sent me to someone else who could. That, in my opinion, is the sign of a good doctor.

How do you live out in the great outdoors without fear of reinfection? My fear of this is all-consuming. I used to be an outdoorsy person, and now I’m scared to walk on grass. A sidewalk littered with leaves makes me so overwhelmed that I’ll walk in the street.

This a great question that merits its own post, coming soon. Stay tuned!


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com


 

 

 

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every couple of months, Lyme Warrior Jennifer Crystal will devote a column to answering your questions. Here are her answers to some frequently asked questions she has recently received.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

How long did it take for you to get better?

I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.

What medicine and/or supplements did you take?

Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.

How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.

This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.

My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.

I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.

Do you have any communication strategies?

One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?

As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.


jennifer-crystal

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 jennifercrystalwriter@gmail.com