Category Archives: Blog

GLA Greenwich Gala 2018: Highlights

Global Lyme Alliance honored Lyme disease patients and researchers at its annual Greenwich Gala on Saturday, May 12 at the Hyatt Regency Greenwich. The event supports GLA’s mission to conquer Lyme and other tick-borne diseases through research, education and awareness. The Gala was preceded by GLA’s Research Symposium.

Gretchen Carlson, TV journalist, female empowerment advocate and chair of The Miss America Organization, served as the emcee of the Gala. In her opening remarks, Carlson, a Lyme disease survivor, said the event would not only focus on “this amazing organization” dedicated to advancing research and education, but on the “power of women.” She noted that the three mothers serving as co-chairs were “successful and resilient moms, strong in spirit and conviction.” All three have been caregivers and supporters of daughters who have suffered and continue to battle Lyme disease.

Carlson was soon followed by Scott Santarella, GLA’s CEO, who introduced Nicole Baumgarth, D.V.M., Ph.D., Professor of Immunology at the Department of Pathology, Microbiology & Immunology and the Center for Comparative Medicine, University of California, Davis. A GLA grantee, Dr. Baumgarth received the Lauren F. Brooks Hope Award for being among the first to document immunologic failures on multiple levels in Lyme disease. In accepting the award, she said: “We are all here to no longer have to be here…to find a cure and, even better, to find a mechanism to prevent this disease so none of us have to think about how this horrible disease is affecting our loved ones.”

Gala supporters were treated to a live performance by singer/songwriter Jesse Ruben, whose mother, Janet Ruben, presented him with GLA’s Star Light Award for his ongoing Lyme disease outreach efforts. In one of the more emotional speeches of the night, she admitted that initially she had trouble believing her son’s Lyme diagnosis. “I didn’t listen when he told me he was suffering,” she said. “I let what I thought was going on to color the truth.” Happily, Janet learned more about Lyme and their family was able to provide Jesse with the support that contributed to his healing. But she appealed to those in the audience, saying “those of you with people in your lives who are suffering with Lyme…please…listen to them. Hear them. Support them any way that you can. They need you.”

Among the honored guests attending the Gala were U.S. Senator Richard Blumenthal; stage, screen and television actor Victor Slezak; broadcast anchor and producer Mike Schneider; investigative journalist Mary Beth Pfeiffer; UFC lightweight fighter Jim Miller and singer/songwriter Marina Morgan. Gala Event Chairs were Westport’s Stephanie Ercegovic with daughters Adriana & Eloise, Greenwich’s Sonya Rolin with daughter Tatiana Donald, and Greenwich’s Astrid Womble with daughter Christina Womble.

« 1 of 2 »

GLA: Lyme Disease Research Symposium 2018

Highlights from GLA’s 2018 Research Symposium with top Lyme Disease Researchers

 

by Timothy J. Sellati, Ph.D., Chief Scientific Officer, GLA
(pictured: GLA’s Scott Santarella and Dr. Timothy Sellati with GLA grantee Dr. Nicole Baumgarth)

The incidence of tick-borne diseases has reached epidemic proportions in the United States with more and more people seeking medical care for Lyme disease and its co-infections. As Lyme spreads across the country, scientists continue to grapple with a variety of pressing questions. How can we better diagnose and treat Lyme? Are there direct diagnostic strategies that can avoid the complications associated with indirect antibody-based detection methods? What new non-traditional treatment options are available to patients suffering from persistent symptoms despite prior treatment with conventional antibiotic regimens and what role does our gut microflora play in the clinical course of Lyme disease? Provocative questions such as these and many others were discussed at the 2018 Global Lyme Alliance Research Symposium, which was held May 10-12 in Greenwich, Connecticut.

lyme disease research
GLA research grantees: Drs. Ying Zhang, Klemen Strle, Nicole Baumgarth, Brian Fallon and Kim Lewis

Some 40 scientists from across the nation met to share their most up-to-date research findings about Lyme disease. They included researchers who had received GLA grants in 2017 as well as Scientific Advisory Board members who provide strategic guidance and direction for GLA’s research and scientific programs.

One important area of discussion during the two-day symposium was the targeting of persister forms of Borrelia burgdorferi, the causative agent of Lyme disease, with novel essential oil treatments shown to be effective in killing spirochetes in bacterial culture. Now these studies are being extended to test the ability of essential oils to treat mice, non-human primates, and eventually humans. Another research group described heritable drug tolerance in B. burgdorferi and has explored use of novel antibiotics derived from soil bacteria to kill persister B. burgdorferi. This same group, as well as other researchers in attendance, are investigating how disturbance of the microbiome, the “ecological community of commensal, symbiotic and pathogenic microorganisms” found in our bodies, might worsen and prolong the symptoms experienced by Lyme disease patients.

Also discussed was the 10-20% of Lyme disease patients who despite antibiotic therapy are not cured. Unfortunately, these patients often suffer debilitating joint and muscle pain, fatigue, and neurocognitive difficulties, which are termed post-treatment Lyme disease syndrome (PTLDS). The mystery of why people fail therapy is the subject of GLA-funded work, both in the mouse and non-human primate model of Lyme disease. Efforts to understand the immune response underlying PTLDS and what perpetuates a chronic inflammatory state are being spearheaded by the next generation of young Lyme disease research scientists, recent recipients of the “Deborah and Mark Blackman-GLA Postdoctoral Fellowships.” Their latest discoveries were presented in the form of scientific posters and these young postdoctoral fellows appreciated the opportunity to discuss their work with some of the leading senior research scientists in the field.

lyme disease research
Deborah Blackman with the “Deborah and Mark Blackman-GLA Postdoctoral Fellowship” recipients, Drs. George Aranjuez, Ashley Groshong, Bijaya Sharma, Chrysoula Kitsou, and Matthew Muramatsu

Another fascinating area of discussion centered on harnessing the power of metagenomics, proteomics, and metabolomics along with “big data” analysis to achieve precision diagnosis through identification of Lyme disease-specific biomarkers was another area of discussion. Measuring biomarkers of a person’s immune response to infection with B. burgdorferi coupled with novel methods to directly detect the presence of spirochetes in patient samples promises to replace the current gold-standard two-tier testing method, whose luster is tarnished by insufficient sensitivity and specificity, especially during acute or long-term chronic infection.

lyme disease research
GLA’s Dr. Mayla Hsu with Drs. Omar Green and Joel Tabb of Ionica Sciences

Finally, using a rat model of Lyme neuroborreliosis stunning fluorescent images were presented of B. burgdorferi invading what were thought to be sacrosanct regions of the brain. This work meshed seamlessly with a talk on the relationship between Lyme disease and the development of psychiatric disorders, and what changes in biomarker levels might be indicative of psychosis.

This year’s symposium concluded with a stimulating group conversation about the need for evidence of the persistence of B. burgdorferi after antibiotic treatment as well as the existence of biofilms in patients, and the coordination and sharing of “big data” results across research groups.

Once again, GLA was proud to host this gathering of leading scientists. The latest research findings will eventually be published in peer-reviewed scientific journals. Not only are we eager to see the final results, but will continue to support ongoing studies.


timothy sellatiTimothy J. Sellati, Ph.D., is Chief Scientific Officer at Global Lyme Alliance

As GLA’s Chief Scientific Officer, Dr. Sellati leads GLA’s research initiatives to accelerate the development of more effective methods of diagnosis and treatment of Lyme and other tick-borne diseases.

Adding Joy and Pleasure to Life, No Matter When

by Jennifer Crystal

I celebrated my 40th birthday by doing a cartwheel on a beach.

A few weeks earlier, a childhood friend and I had been bemoaning our upcoming birthdays. We agreed that we would feel better about the looming big number if we’d achieved everything we’d hoped to by this age. Back when we were 10, 15, 20, our 40th birthdays felt very far away, and we were both sure we’d be married and settled by then. Though we have each made strides in our careers and our lives, 40 doesn’t look the way we expected it to—nor does it look the same as it does for many of our contemporaries—and my friend lamented that instead of a celebration, the birthday felt like a marker of an unfortunate reality.

That’s when I decided we needed a perspective shift.

Actually, the shift was one I adopted halfway through my 39th year: to add joy and pleasure to my life in the meanwhile.

It began when another friend, newly single, announced that she was going to start dating just for fun. She ultimately wanted another long term relationship, with the right person. But she had things to work through from her old relationship, and wasn’t necessarily in a place to jump right in to something serious. That didn’t mean, though, that she couldn’t jump in to anything. She was just going to enjoy whoever came along, for whatever they brought to her life, just for the sake of that enjoyment.

Wait a minute, I thought. Why can’t I do the same thing?

For years when I was bedridden with tick-borne illnesses, my entire life had been on hold. Not just in terms of dating, but in terms of working, exercising, socializing, or doing anything else that didn’t involve taking medication or going to a doctor’s office. I was waiting. Waiting to feel well enough to walk up a flight of stairs. Waiting to get my PICC line out so I could wash my own hair. Waiting for my hands to not ache so I could type one paragraph.

During that period of recovery, I had a recurring dream. I was back at the summer camp where I got my original tick bite. It was the last day of summer, and I realized that all the boats had been put away and I’d never had a chance to waterski. My therapist analyzed this dream as a fear of missing the summer of my life. By losing my prime years to illness, I worried I would miss that prime entirely. The therapist reminded me that I was simply on a different track than my peers, and that my prime would come later, when I was healthier.

She also helped me to see that I was missing fun. From that point on, I tried to add enjoyment to to my life, even though I couldn’t do most of the things I had once considered fun: waterskiing, skiing, going out with friends. But I worked with friends to bring the fun to me. When I was well enough to go out to lunch, a friend and I went to an outdoor place by a harbor, so I could enjoy the feeling of being by the water. Another friend took me for a drive and had me describe to him what it was like to drive the ski boat I once had at camp. He took me to a ski movie, so I could at least participate in that life in some way.

I didn’t enjoy those moments as much as I could have, because I was still waiting. Waiting to be able to do those activities for real.

As I got better, I was able to actually ski, to try new water activities like paddle-boarding, to learn to bike in an adaptive way. I hosted parties and board game nights and went out with dear friends, not to the extent I once had, but certainly in a manner that added a lot of fun to a life that had previously been constricted by illness.

But it wasn’t until my friend made her “dating just for fun” announcement that I realized that despite these additions to my life, I was still in a waiting state. I’d still been denying myself certain pleasures, because I have to be so careful about my limitations. And also because I was waiting to do things like go on vacation, until I felt fully secure in my career and met someone to travel to a romantic destination with. I was waiting to meet that right person, who would fully understand my limitations and would be willing to build a life together in light of them.

I still do strive for those things. But I’ve lost enough years of my life. Why should I deny myself joy and pleasure while I wait? Lyme disease or not, there are no guarantees; none of us know if we’re going to be here tomorrow. So, like my newly single friend, I decided that I, too, was allowed to just enjoy life starting that very day.

I, too, started dating just for fun. What a relief of pressure, to date someone just because I enjoyed their company, even if I knew he wasn’t The One. To my friend who was lamenting our upcoming birthdays, I suggested a beach vacation that worked within my limitations (two hours away, and on a strict  budget). What a pleasure it was to just enjoy our time on the beach together! To celebrate the fact that we’ve made it to 40, and survived all that we have, and are here to enjoy it now.

On our second day on vacation, I noticed that a number of kids were doing cartwheels in the sand. “I bet I can still do that,” I announced, and without thinking, I just stood up and did one. Not perfectly—I didn’t stick the landing—but even as I fell over in the sand, I was laughing hysterically.

“Why would you do a cartwheel?!” my mother asked when I sent her the video later. Undoubtedly she was worried that acrobatics would take too much energy for me and set off a flare of my Lyme disease, or that I’d re-injure the knee I’d had repaired years before.

To be honest, I didn’t think about either of those concerns before I did the cartwheel. I just did it, because I knew I could. And, as I told my mother, “because all the other kids on the beach were doing it.”

I may be 40. I may still have Lyme and other tick-borne illnesses. I may still be waiting for certain pieces of my life to fall in to place. But  I’m not going to wait to have fun.


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

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.

 

Gender and Lyme: Is Tick-Borne Disease Different for Women?

by Jennifer Crystal

Every Thursday evening, three girl friends come over to eat ice cream with me and watch Grey’s Anatomy. Yes, that show is still on! Despite the fact that it’s been running for 14 seasons, it often makes some commentary on current social issues. In one recent episode, the Chief of Surgery, Dr. Bailey, checks herself in to the hospital because she believes she is having a heart attack. But because her tests initially come back clean—she suffers from Obsessive Compulsive Disorder (OCD) and is under tremendous stress— she grows increasingly upset when her male doctors won’t listen to her, and her symptoms are written off as psychosomatic.

Does this scenario sound at all familiar?

Dr. Bailey’s experience is one that too many female patients go through—not just women with Lyme, but women with any illness. In her March 2013 New York Times article, “The Gender Gap in Pain”, award-winning health writer Laurie Edwards cites several studies that prove that women’s complaints of pain are much more likely to be dismissed than men’s. For Lyme patients, the complaints are not just about pain, but also about brain fog, word reiteration, forgetfulness, heart palpitations, insomnia, and that particularly nebulous one, fatigue. Because Lyme symptoms can seem idiopathic—meaning they arise spontaneously from unknown causes— and do sometimes encompass a psychological component, it’s easy for doctors to write them off as “all in someone’s head.”This especially occurs when faulty diagnostic tests can’t support what a patient knows to be true: that she is physically ill with an all too real pathogen. Women who appear in doctor’s offices wearing makeup or hairstyles that mask how awful they really feel are often told, “But you don’t look sick!”

If women are louder with their complaints, it’s only because they’re not being heard. A patient recently wrote to me to ask if Lyme is more common in women, because all of the other patients in the waiting room of a doctor she recently visited were female. Perhaps those females had legitimate tick-borne illnesses that had been dismissed longer than their male counterparts’, and they had finally made their way to a Lyme Literate Medical Doctor (LLMD). Whatever the reason, medical research demonstrates that more men than women test positive for Lyme disease. A study by Dr. John Aucott of Johns Hopkins University found that when testing for Lyme—with tests that are, admittedly, less than 60% accurate—women’s and men’s antibody responses were different, and more men than women tested positive.

Does this mean more men than women actually have Lyme disease? That’s hard to know, since the tests are so unreliable. What it does mean though is that men have a greater chance of having their symptoms confirmed by clinical tests, while women face a greater uphill battle in getting accurately diagnosed. Some have to wander around for years—it took me eight years, battling both male and female doctors—to be taken seriously. Even on Grey’s Anatomy, the fictional Dr. Bailey had to collapse on the hospital floor before her doctors would admit she might actually be suffering a heart attack, and whisked her in to surgery.

In addition to more men than women being diagnosed with Lyme disease, women face different challenges from the illness. My own symptoms always increase during menstruation, when the hormones progesterone and estrogen diminish. I have a higher chance of getting a migraine than a male, and my fatigue and sleep disturbances are worse during those few days. Doctors and patients alike agree that many, many women say the same thing. Women also have to contend with the possibility of yeast infections from antibiotic treatment for Lyme. Yeast overgrowth can be a problem for any gender, as antibiotics not countered by probiotics and a special diet can cause intestinal yeast overgrowth, but women also have the added potential of vaginal yeast infection.  And of course, women who contract Lyme while pregnant must work with their doctors to manage their own health while trying to avoid passing the Lyme bacterium to the fetus; women who already have Lyme and become pregnant have similar concerns.

Don’t forget that ticks do not discriminate. They will bite anyone of any gender. But  women who get tick-borne illness as a result do often face discrimination when it comes to being validated, diagnosed, and treated by physicians. Once accurately diagnosed, women face different complications than men.

For now, women can’t do much about the fact that menses can worsen our symptoms, or that we are more susceptible to yeast infections, or that Lyme can affect pregnancy. We can, however, speak up for ourselves and for our illnesses. We can push back against doctors who won’t listen, or go elsewhere to find better medical care. We can also fight against the psychosomatic write-offs of Lyme sufferers. And we can share our stories, bonding together in a movement to earn validation and respect for all patients.


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

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.

You Get What You Pay For: Be Wary of Where You Buy Your Supplements!

by Jennifer Crystal

Many people turn to the internet for supplements, where they can find products at discounted rates. But saving a few dollars can be a big gamble that can put a patient’s health in jeopardy.

Tick-borne illness is expensive. The toll it takes on your body notwithstanding, the financial cost can bankrupt even the most successful people. Patients suddenly unable to work are often swamped by medical bills. Some don’t have insurance. Those that do often still have to pay out-of-pocket for their appointments and then fight for reimbursement. Many insurance companies deny long-term treatment coverage, at least until the weary patient puts up a long battle. To make matters worse, non-traditional therapies that help Lyme patients, such as specialized diets, neurofeedback, integrative manual therapy, and nutritional and homeopathic supplements, are generally not covered by insurance.

So what is a patient to do? For supplements, many people turn to the internet, where they can find products at discounted rates compared to retail stores. I’ve certainly done this, wanting to save as much money as possible since my illnesses, a combination of Lyme and two tick-borne co-infections could easily cost $1,000 per month out of pocket. But saving a few dollars can be a big gamble that puts a patient’s health in jeopardy.

Why? Because a good deal of what we order from the internet is fake.

In her article “The Fake Supplement Issue No One is Talking About—Beware of Amazon” , Jill Carnahan, M.D., says, “Amazon has been making headlines lately due to surges in counterfeits, imitation merchants, and elaborate fake review scams.” She cautions that this is especially an issue for supplements, a $112 billion market that has almost no regulation. A Forbes article noted in Dr. Carna-han’s post revealed that 25% of Amazon’s marketplace are Chinese knockoffs.

I learned this the hard way recently, when I ordered a supplement off of Amazon. It was a basic vitamin that I usually get at the pharmacy, but I didn’t have time to go to the store that week, so I opted for the convenient click of Amazon Prime. Two days later, a green bottle arrived that looked exactly like the one I buy at the pharmacy—with the same label, sealed in plastic packaging—but when I opened it, I found red capsules instead of white. Were they real? They might have been. But I wasn’t going to risk my health to find out. In the end, I wound up paying double the money—the sunk cost of the discarded bottle from Amazon, plus the replacement bottle from the pharmacy—and still had to take the time to go to the store.

I was shocked to learn from Dr. Carnahan’s article that even major stores can’t always be trusted either. She cites a 2015 New York State attorney general’s office report which found that GNC supplements contained ingredients that were not listed on their labels. A Walgreens ginseng supplement turned out to be rice and garlic, and six supplements from Target contained beans, rice, peas, and carrots instead of the main ingredients listed.

With this frightening information, now I really ask, what is a patient to do? Dr. Carnahan recommends buying straight from the producer. There are a number of reputable online stores that sell brand name supplements. I personally use Emerson Ecologics, Researched Nutritionals, and Wellness Pharmacy. A good Lyme Literate Medical Doctor (LLMD) will refer you to his or her trusted pharmacy or retailer.

Moreover, beware those doctors who, instead of making these referrals will try to sell you supplements directly from their office. They often charge a steep mark up, for this service, which begs the question, is the doctor running a retail concern or a medical practice? Some doctors certainly have the patient’s convenience in mind, but be sure you trust that your doctor is acting in your best medical interests rather than his or her own financial interests. I’ve had naturopathic and traditional physicians sell me expensive supplements that they swear will make me better, but they haven’t. When I called one physician’s office, the au-tomated prompt listed the apothecary before scheduling; this told me exactly where this doctor’s priorities lay.

The bottom line is to be vigilant and well-informed, and to always make sure both you and your practitioners are putting your health first. Be sure you trust your doctor and your pharmacy and retailers, and remember the old adage, “You get what you pay for.”


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

#VBGIVESBACK: STACI GRODIN

Republished with permission from Veronicabeard.com

For the month of April 2018, veronicabeard.com will donate $10 from every sale to Global Lyme Alliance as part of their ongoing #VBGIVESBACK program.

For over two years Staci Grodin battled symptoms that ranged from blinding migraines to chest pains before finally being diagnosed with Lyme disease. Today as a mother of three, she continues to deal with symptoms 20 years after her diagnosis. This scenario is a common one for many dealing with a tick-borne illness and it inspired her and her husband to act. Her work with the Global Lyme Alliance focuses on research, education and awareness around Lyme disease and other tick-borne illness. With the organization, Staci is working to provide prevention resources to families, schools and the medical community and making a difference in the lives of those suffering from this life-altering illness.

WHAT IS LYME DISEASE?

Lyme disease is a multi-stage, multi-systemic illness caused by the bacteria Borrelia burgdorferi. Lyme is the most common vector-borne disease in the United States and has been found in all 50 states. There are an estimated 329,000 new cases each year, according to the Centers for Disease Control and Prevention.

The disease is transmitted by the bite of a black-legged tick (aka: deer tick). Lyme disease can affect each person differently. The most common symptoms in early-stage Lyme are fatigue, joint pain, brain fog, and flu-like symptoms. When undiagnosed and left untreated, it can become a severely debilitating illness affecting multiple organs, including the joints, heart, brain and other parts of the central nervous system.

Everyone is at risk for Lyme and other tick-borne illnesses. Men, women, children, and our pets are all susceptible. The most at risk group is children under the age of 15. In the U.S. more than 200 children get Lyme every day.

TELL US ABOUT YOUR DIAGNOSIS…

As a carefree junior in college I couldn’t possibly imagine worrying about anything except my next test and my social plans. As I slowly became plagued with crippling arthritic symptoms in my hands and arms, blinding migraines, flu-like symptoms, swollen glands, chest pains and more, I could not understand what could possibly be wrong with me. My journey with tick-borne illnesses is sadly very similar to that of many other sufferers. Over the next two years following the start of symptoms, I visited dozens of specialists to try to find an answer. Each doctor referred me to yet another doctor who might be more equipped to deal with the mystery illness. Some doctors even told my mom to send me to a psychiatrist in case I was creating these symptoms to seek attention. I wasn’t. I pushed my way through junior and senior years of college, often dragging myself to classes and forcing myself to get through school.

With my mom continuously by my side, I finally made my way to a cardiologist who asked if I had ever taken a Lyme disease test. I had never even heard of Lyme disease at the time. Fortunately, my test came back positive. Many people, however, have tick-borne illnesses and show negative blood test results, as current tests are 55% inaccurate. Naturally, such false negative results makes receiving a correct diagnosis for those Lyme sufferers even harder. I thought now that my illness had a name, the treatment would be easy. I was wrong. Like most ticks, the tick that had bitten me carried a host of co-infections, making treatment and recovery even trickier. My journey to wellness was a long one fraught with frustration and worry. With the help of different Lyme literate physicians, I ultimately came up with a combination of eastern and traditional western treatment options to see which one would hold true, which one worked best.

As my health started to improve, I met my husband, Rich, through a mutual friend in New York City. As we talked about having a family, I feared that these diseases would be transmitted to my children—thanks to medication taken during pregnancy, they were not. I went on to have three children and in 2001 my husband and I decided to start the Turn the Corner Foundation. Our goal was to increase education and awareness of Lyme and tick-borne illnesses. In 2015, Turn the Corner merged with the Lyme Research Alliance and we morphed into the Global Lyme Alliance. Throughout my tenure, I particularly enjoyed seeing the long-term effects of the awareness, physician training and education programs that I spearheaded, which enabled doctors worldwide to learn firsthand about tick-borne illnesses by studying side by side with Lyme literate doctors.

Although even today, I still deal with some of the symptoms from Lyme disease, I feel extremely fortunate that this journey has led me to meet and help so many other passionate people all around the world. I am grateful that I have had such tremendous support from my family and friends throughout my illness and that everyone showed such eagerness to help us from the moment we began the foundation 16 years ago, dedicating much of their personal time and energy toward the cause.

WHY IS LYME DISEASE DIFFICULT TO DETECT?

Lyme disease can be difficult to diagnose for a multitude of reasons, including:

  • There is no accurate diagnostic test. The common diagnostic tests are 55% inaccurate, so many people who test negative may in fact have Lyme. This leads to high rates of patients being misdiagnosed and left untreated. And as many as 20%, even if they were properly diagnosed and treated early, continue to suffer persistent illness.
  • Ticks are tiny! Most people who get Lyme don’t recall ever seeing a tick. Deer ticks can range in size from a 1.3 mm (nymph)—roughly the size of a poppy seed— to 3.7 mm, a full-grown female.
  • Ticks are stealth. Ticks possess a substance that numbs a person’s skin, which may explain why many people never feel a bite.
  • No rash may appear. Fewer than 50% recall seeing a rash of any kind, let alone the classic “bulls-eye” rash associated with Lyme.
  • Hundreds of possible symptoms. Lyme shares a multitude of symptoms with other illnesses, such as fibromyalgia, rheumatoid arthritis, lupus, MS, and ALS, to name a few. This is why Lyme is called “The Great Imitator” for its complexity and contributes to the difficulty and delay in receiving an official Lyme diagnosis.
  • The lack of Lyme-literate physicians. Early stage Lyme disease is widely accepted by most physicians, especially if there is a clear bulls-eye rash, the patient has the tick or recalls the tick bite. However, the lack of a reliable diagnostic test, conflicting definitions of Lyme, and its many symptoms, may puzzle healthcare providers, causing them not to review Lyme dis-ease as a viable diagnosis. Lyme-literate providers, on the other hand, will look at the entire health picture and environment of a patient before making a final clinical diagnosis.

Without an accurate diagnosis, thousands of patients are left without effective therapies while symptoms worsen, and while those around them question their illness, often including physicians not well-versed in tick-borne diseases.

 

WHAT ARE THE GOALS OF THE GLOBAL LYME ALLIANCE?

Global Lyme Alliance is the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education, and awareness. GLA has gained national prominence for funding the most urgent and promising research in the field. GLA-funded researchers—who were the first to prove the existence of the previously disputed chronic Lyme condition—have decoded the Lyme genome, discovered how the disease can survive antibiotic therapy, and now understand far more about what makes the Lyme bacterium different than any other type of infection. Our goal is to help patients, by developing an accurate diagnostic test and proven treatment options for people at all stages of Lyme disease.

GLA also offers the general public and physicians significant education and awareness initiatives, including an interactive school curriculum, a camp awareness program, its Lyme Education Ambassador Program (LEAP), and a CME-accredited medical education program for healthcare professionals.

GLA’s awareness initiatives focus on both prevention and wellness through extensive social media campaigns, videos, blogs, national Public Service Ads, and events. GLA’s Doctor Referral Program helps thousands of people suffering from Lyme find a doctor who is well-versed in tick-borne diseases.

HOW IS THE GLOBAL LYME ALLIANCE WORKING TO PREVENT THIS DISEASE?

GLA’s Be Tick AWARE program is focused on educating children, families, schools and youth-based organizations about the risk of Lyme disease, how to prevent a tick bite and what to look for if you suspect you may have Lyme.

The Be Tick AWARE Prevention Kit is a fun and easy way to teach kids how to protect them-selves from a tick bite. It’s a great resource for camps, schools, and other outdoor-based organizations to teach and remind kids and staff how to protect themselves from a tick bite.

GLA’s Lyme Disease Prevention Curriculum Educational materials that can be implemented in the classroom, home, or other youth organization.

These tools teach kids how to identify ticks, check for ticks, and about Lyme disease. Here are simple tips to Be Tick AWARE:

  • AVOID areas where ticks live. Ticks thrive in wood piles, long grass, bushes, leaf litter, and beach grass.
  • WEAR light-colored clothing: long pants, sleeves, socks, and closed-toe shoes.
  • APPLY EPA-approved tick repellent (such as DEET or picaridin) and insecticide (such as permethrin) to skin, clothing, and shoes as directed.
  • REMOVE clothing upon entering the home; toss into dryer at high temperature for 10-15 minutes before washing them.
  • EXAMINE yourself and your pets for ticks daily. Check everywhere — ticks love to hide!

WHAT ARE THE BIGGEST MISCONCEPTIONS WHEN IT COMES TO LYME DISEASE?

MYTH: Ticks are only active in the summer.
FACT: Ticks are active year-round. They are most active in spring, summer and fall.

MYTH: Only deer carry black-legged (ie: deer) ticks.
FACT: Ticks use a multitude of hosts, in addition to deer, including household pets, birds, mice, chipmunks, squirrels, and lizards!

MYTH: It takes 36-48 hours for a tick to infect a person.
FACT: The longer a tick is attached, the higher the risk of transmission. But it is possible to get Lyme disease even if a tick is attached for less than 24 hours.

WHAT IS YOUR ADVICE TO OTHERS IMPACTED BY THIS DISEASE?

I speak with so many parents daily from around the world who are concerned that their children may have tick-borne illnesses or are panicked because their physician may be overlooking the possibility that one or more of these diseases is the cause of their or their loved ones suffering. I encourage everyone that I speak with to remember that they must be a fierce advocate for their children. If you are not comfortable with the diagnosis from your current doctor, you must seek other opinions elsewhere, as this illness is complex and very hard to diagnose. Educating oneself about the disease is as crucial as is learning about proper prevention methods.

Checking yourself and your children and pets can prove to be an excellent way to remove ticks properly before they even enter into your home. Another key component is awareness. Children or adults do not have to play in the woods to get bitten. Sadly, it’s very easy to get bitten and not even know it. Routine at home tick checks after camp or sporting events are critical for effective prevention. Keeping my three children, ranging in age from 7 to 14, protected from ticks and tick-borne illnesses, and yet able to enjoy themselves in the outdoors, is always of utmost importance to me.

If you or your child or any family member has one or more of the tick-borne illnesses, remember that you do have treatment options. Finding the right physician and support group or being connected with others who are dealing successfully with these diseases is also helpful.

SHOP STACI’S PICKS AND SUPPORT THE GLOBAL LYME ALLIANCE

Continue reading #VBGIVESBACK: STACI GRODIN

The Pros and Cons of Social Media When You Have Lyme

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 and found an active autoimmune community. After I was diagnosed with Lyme I went searching for a similar community to help me cope with a new and overwhelming diagnosis. I didn’t know how life-changing my being introduced to that community would be. I’ve met so many knowledgeable and inspirational people since then who’ve become my mentors and friends during this journey.

That being said, it’s not always rainbows and sunshine on social media. There are some definite downsides and moments where a good social media detox is warranted. Here is a list of the pros and cons of social media when coping with Lyme disease or other chronic illnesses.

Pros

1. Meeting people who have the same illness

My non-Lyme friends give me strange looks when I tell them I’m going to coffee with a Lyme friend I met online. Getting together with someone I met on the internet is probably not something I would’ve done before contracting Lyme, but now it seems completely normal. There is a very special connection between people who are diagnosed with the same illness. I’ve been fortunate enough to meet in person many of those I first met online and every time I meet someone new we click instantly and talk for hours. Even if you’re not comfortable meeting face-to-face, it’s comforting to interact with people online who can relate to what you’re going through.

2. Resource sharing

While we are making progress, treatment for chronic Lyme disease has not yet been mainstream. Some of our doctors are forced to hide that they treat Lyme out of fear of losing their medical licenses. Many Lyme patients get referrals to Lyme Literate Medical Doctors (LLMD) and other Lyme-literate medical professionals through websites, (LINK TO (https://globallymealliance.org/education-awareness/find-medical-professional/), forums, and Facebook support groups.

3. Sounding board for symptoms and treatment

It has been said that Lyme disease is a do-it-yourself disease. This was true for me until I found the online Lyme community. Lyme disease symptoms can change daily or even hourly, so it’s comforting when you learn that someone else has had a similar symptom. It also helps to chat with someone who has had a similar treatment protocol, so you can be at least in part prepared for the side effects.  Naturally, our doctors have the final say with regard to treatment, but information sharing among other Lyme patients is invaluable.

4. Community

No one should have to face a devastating illness alone and there is a real sense of belonging in the online Lyme community. Having this community is like an informal support group. They are there to chat with you on your bad days and for you to talk to them on theirs. The community listens to each other’s stories of successful treatment and things that didn’t work out. I’m so proud to be a part of this group.

5. Humor

Many of the social media accounts that I follow are lighthearted and include humor. This is where I find funny chronic illness memes and jokes about the mountain of supplements we all take every day. It can’t be all seriousness all the time.

Cons

1.Comparison

One of the biggest problems with social media when it comes to chronic illness is the inevitable comparisons that happen. It may cause you emotional pain to see other people getting better when you are still struggling, or on the other hand, you may see someone who is critically ill and you fear the same thing will happen to you.

2. Negativity

The reality of illness can be very negative, but with social media sometimes you don’t have a choice about whether or not you are exposed to negativity on a certain day. You may be having a good day and then encounter internet negativity (which may not be particularly relevant to your case) and it shifts your entire mood.

3. Rejection

Just like in face-to-face relationships there is a social hierarchy online as well. Maybe you follow someone on social media and they don’t follow you back, or you notice someone else has more followers than you do. It can feel like a rejection, even if it’s not what the other person intended.

4. Fear

Frequently, Lyme advocacy accounts show the harsh reality of Lyme disease, such as severe disability or loss of life, in order to make others aware of the devastating effects of this illness. Personally, when I hear someone has lost their life to Lyme, my first reaction is sadness for them and empathy for their loved ones; my second response is fear of the same thing happening to me.

5. Misinformation

You’ve heard it a million times, don’t believe everything you read on the internet, for much of it is misinformed. This is true in all subjects. Also, what worked for someone else won’t necessarily work for you. Make sure you look at the sources—are they reputable?— and check with a medical professional before trying anything new.

It’s a personal choice for everyone as to how involved they want to be on social media. For some, it’s a beneficial resource but others may not be interested in getting involved. Each person must weigh the pros and cons and decide what is right for themselves.


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Preload