Category Archives: Blog

GLA POV: Advances in Serodiagnostic Testing for Lyme Disease

by Timothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance

GLA Point of View on “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand” published in Clinical Infectious Diseases

 

In 2016, a scientific conference was held at Cold Spring Harbor Laboratory’s Banbury Center to discuss the state of serodiagnostic testing for Lyme disease, from both a historical perspective as well as recent advances in the field. This conference was supported by a meeting grant from Global Lyme Alliance (GLA). GLA, as part of its support, also inspired the topic for the conference; to discuss the adequacy or inadequacies of the current Lyme disease diagnostic testing paradigm. The opinion of conference attendees was detailed in a recent publication by John A. Branda, M.D. of Harvard University, Steven E. Schutzer, M.D. of Rutgers University-New Jersey Medical School, and co-authors, in the peer-reviewed journal Clinical Infectious Diseases.

The article titled “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand” clearly articulates the fact we are at a historic turning point where new diagnostic approaches can deliver better performance than the current two-tiered testing protocol that was established for Lyme disease serodiagnosis back in 1994. Issues with poor sensitivity, specificity, and reproducibility inherent in the two-tiered testing protocol, which relies on Western immunoblotting, makes it a suboptimal choice and yet, more than two decades later, this approach remains the standard for laboratory diagnosis of Lyme disease. Branda, Schutzer, and their colleagues highlight several exciting technical and conceptual advances in laboratory diagnostic testing that, if adopted, would significantly improve the accuracy of testing and ease with which physicians can diagnose patients, particularly those in the early stages of Lyme disease.

The article describes a new generation of enzyme-linked immunosorbent assays (EIAs, the first tier of the current testing protocol) that have emerged and offer superior specificity, reproducibility, and ease of interpretation of assay results. The authors suggest that adoption of such NextGen EIAs, as a replacement for second-tier Western immunoblotting, could eliminate or at least significantly reduce the rate of false-positive or false-negative results associated with the second tier of the current testing protocol. Furthermore, coupling the use of multiple NextGen EIAs that target different parts of Borrelia burgdorferi, the bacterial causative agent of Lyme disease, would provide greater specificity than would be obtained with individual EIAs. This well-accepted principle is applied in rapid testing for human immunodeficiency virus (HIV).

The time for the Lyme disease community to benefit from implementing a similar test strategy is long overdue. In fact, in a separate study published by Branda et al. in Clinical Infectious Diseases, it was demonstrated that a two-EIA protocol can be more sensitive in early Lyme disease than conventional two-tiered testing.  GLA has been focused on investing in direct and indirect diagnostic methods using the latest available technologies.

Other key points made at the Banbury Conference include the following:

  1. Beyond improved sensitivity, the two-EIA protocol offers several advantages compared with standard two-tiered testing. The results are obtained objectively by an instrument system, and the information provided to the clinician is straightforward (e., the patient is either seropositive or seronegative), with an interpretation that is less complex than immunoblotting.
  2. Improvements in serologic testing methods or protocols will not address their inability to differentiate active infection from past exposure. Ideally it will be addressed through improved direct detection methods, because direct detection of the microbe is strong evidence of an active rather than a past infection.
  3. Ultimately, it will be advantageous to have both direct and indirect tests available, with direct detection methods favored in the evaluation of patients who present soon after initial infection, or who have been exposed multiple times and have a persistent antibody response, and indirect tests favored when clinical presentation of the primary infection occurs weeks or months after tick exposure.
  4. Although several next-generation EIAs are FDA-cleared as first tier assays, none is currently cleared as a second-tier test in place of immunoblotting. Currently, the Centers for Disease Control and Prevention (CDC) recommends that only laboratory tests cleared or approved by FDA be used to aid in the routine serodiagnosis of Lyme disease. Thus, an important next step for widespread adoption will be for assay developers to provide performance data establishing that their assay is equivalent to, or better than, the current reference standard, which is the two-tiered testing with immunoblots.

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

A noted immunologist and microbiologist, Dr. Sellati has more than 20 years of research experience with Lyme and other tick-borne diseases. 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.

Ticks Are a Year Round Threat: Don’t Let Lyme disease Become Your Holiday Surprise

By Jennifer Crystal

Writer Jennifer Crystal discusses common Lyme disease misconceptions. Many are surprising! Read on to ensure you are up to date.

In late November, a friend told me she’d just found an engorged tick on her leg. “Isn’t that crazy,” she said, “at this time of year?”

Like many people, she had fallen into the false sense of security that colder weather meant fewer ticks. Maybe this was true once. Now, however, ticks are a year-round problem. While deer tick nymph season is in late spring and summer, adult ticks feed in fall and—thanks to global warming— in winter too. Ticks can’t survive in very cold climates, but now that we are experiencing markedly warmer winters in the U.S., ticks are living year-round and in previously inhospitable areas. Warmer temperatures have also sped up ticks development rate, allowing them to reproduce faster.

In a recent Boston Globe article, Dr. Howard Frumkin, former environmental health director at the US Centers for Disease Control and Prevention, said that “the ticks do better with warmer weather.”[1] Indeed, Lyme cases have more than doubled since the 1990s, with the CDC now reporting approximately 325,000+ new cases each year.

Another reason for this explosion in numbers is the way Lyme disease is spread.

We typically associate Lyme with deer—and increased deer populations are a problem—but those animals are not the only tick vectors. Birds and white-footed mice also host ticks, allowing ticks to travel to unexpected areas at unprecedented rates. White-footed mice have become a bigger problem in the last two years due to a bumper crop of acorns—more food has meant more mice and, therefore, more hosts for ticks. A late autumn stroll among acorns and leaves—another hiding spot for ticks—can result in a surprise bite like my friend encountered. Though we tend to be covered up more in the colder seasons, ticks can still attach to our clothes and crawl under a pant leg or behind a collar to reach open skin. Hunters should take special care, and of course, it’s important to continue to check our children and pets for ticks throughout the winter months just like we do in other seasons.

Luckily, my friend’s tick tested negative for Lyme and co-infections. But another friend who found a tick on a winter walk in Boston was not so lucky. That’s right—this occurred in a city! That’s because to reiterate, ticks are not just carried by deer, but can live anywhere that birds and mice go. Researchers in Poland recently published a study in the peer-reviewed journal Parasites & Vectors that found “…well established populations of ticks in urban areas.” The study concluded that “awareness of the presence of these disease agents in cities should be raised.”[2] Around the world, tick-borne illness is not just a suburban problem anymore, nor is it just a summer problem. It is a year-round threat.

Even in Canada, ticks are still an issue well into snowy winter. One woman in Halifax reportedly pulled 12 to 15 ticks off her dog after an hour-long walk, while a zoologist at the Nova Scotia Museum receives 150 ticks a week for identification from various medical offices—more than he receives in the middle of summer. Donna Lugar, Nova Scotia’s representative at the Canadian Lyme Disease Foundation, gets a lot of calls from new patients in the winter—even ones who have become sick after being bitten in a Christmas tree farm lot.[3]

This story begs the question, can ticks come inside the house on Christmas trees? Many people have this concern after finding little black bugs crawling out of their trees. There’s been fear that ticks lay eggs in the trees, which then hatch in the warmer temperatures inside the house. Though Tick Encounter Resource Center has debunked this as a myth, saying that the “ticks” people find are actually Cinara aphids, six-legged bugs with antennae. Ticks have eight legs, and no antennae. Cinara aphids are pests particular to Christmas trees grown in the field, and if the grower doesn’t treat the infestation, the bugs make their way into homes.[4]

Aphids don’t pose a health threat, but ticks do. For that reason,  it’s important to look out for them not just in the woods or at Christmas tree farms, but anywhere you spend time outdoors in winter. Stay vigilant for a happy and healthy holiday season!

[1] http://www.bostonglobe.com/news/world/2017/10/30/global-warming-taking-toll-people-health/aX6hrAjmepoRrlfy9wvXOP/story.html

2 Parasites & Vectors 2017 10:573

https://doi.org/10.1186/s13071-017-2391-2

[3] http://www.cbc.ca/news/canada/nova-scotia/winter-lyme-disease-risk-1.4413245

[4] http://www.tickencounter.org/tick_notes/christmas_tree_ticks


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

Chronic Illness is a Big Waste of Time

by Kerry Heckman
#MyLymeLife

Every Sunday evening I get out my pill organizer and about 20 bottles of medication and supplements. I set up a station at my table and start dividing pills into little compartments for morning, afternoon, evening and bedtime. The entire process takes about a half an hour and a lot of mental energy. It’s not a big deal, but it’s just one example of the time-consuming tasks that go along with having a chronic illness. Things that we have to do that other people don’t have to think about. Each week I spend time ordering and picking up medication refills, making and attending appointments, and preparing special food from scratch. When you’re ill, taking care of yourself becomes a full-time job and everything is done while fighting through brain fog, pain and chronic fatigue.

Mundane tasks aren’t the only reason chronic illness is a waste of time. A lot of time and attention goes into self-care. It’s important but it still takes essential time out of the day. Every morning I meditate, do a few yoga poses, and use a detoxification technique called dry brushing. Then, in the evening, I spend at least a half an hour in an Epsom salt bath and prepare an essential oil diffuser to run while I sleep. Some Lyme patients sit in an infrared sauna or use an ionic foot bath. It’s great for our health, but it all takes precious time.

A big chunk of our time also goes to researching symptoms and treatments. Because research on Lyme disease and other chronic illnesses is lacking we are forced to do a great deal of learning on our own. This is done by reading books, articles, blogs, and message boards, in addition to communicating with others with similar symptoms. This can often lead to a rabbit hole and eat up hours at a time, especially since a lot of information on the internet won’t be relevant to you. On the whole, however, it’s time well spent, but it can become exhausting.

To top it off, people with Lyme are often forced to sit (or lay in bed) and watch life pass us by. We see our friends on social media hiking in the mountains, playing outside with their kids, or crossing the marathon finish line and think, “That could’ve been me if I hadn’t gotten sick.” Many of us have half-finished college degrees or gaps in our resume from when we weren’t able to work. No matter when Lyme strikes there are always missed milestones and lost years.

Recently, I was talking to my husband about how for the past two years we hadn’t been spending much time outside or taking advantage of all the thousands of things to do in Chicago where we live. It was then I realized that for most of the last two years I was either at work or on the couch. Time passes quickly when there isn’t much diversion. I imagine many other people with chronic illness wonder where the years have gone. We’re all waiting for the day we get better and can go back to doing everything we used to do.

In spite of everything, I have a strong drive not to waste precious time. Perhaps it’s because, like many people with Lyme, I’ve been forced to face my own mortality. I often remind myself I only have one life, no matter what circumstances I’ve found myself in. When I feel disheartened about the wasted years, I try to reframe the way I look at time. Lyme is a season in my life. In some seasons we are meant to be active and productive, but in other seasons we are meant to rest and recuperate. I know this season will eventually pass or at least get better.  I think this quote by TK says it all:

Be easy. Take Your time. You are coming home to yourself.

Maybe it’s not about wasted time. Maybe instead it is all part of a process of slowly becoming who you are meant to be. Some people are transformed by radical shift, but maybe people with Lyme need a softer transition. Like the caterpillar becoming the butterfly, we are slowly preparing to take flight.


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.

In The Lymelight Episode 4: Things I wish I knew about Lyme disease when I was diagnosed

Welcome to In The Lymelight: a show about…well…Lyme Disease.

In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco and self-certified iced coffee sommelier Sarah Aiken: we hope you enjoy listening in as much as we enjoy talking.

In our fourth episode of In The Lymelight, we sat down to chat about the things Alex wished she had known while going through the diagnostic process of testing for Lyme and things she wished she had known when she was eventually diagnosed with the invisible illness. Sarah and Alex chat about inaccuracy in testing, symptoms, insurance coverage and tips and tricks to help yourself heal.

Some of Alex’s favorite Lyme friendly literature includes How Can I Get Better? By Dr. Horowitz and Real Food Fake Food by Larry Olmsted.

Alex also recommends RachLMansfield, Minimalist Baker and One Part Plant for simple gluten, dairy and (mostly) sugar-free recipes.

A message from Alex and Sarah:

With #GivingTuesday having just passed, fundraising for Global Lyme Alliance is still at the forefront of our minds. Sarah and I started In The Lymelight to fill a hole that I felt when I was diagnosed with Lyme, leaving me overwhelmed and scared. Our goal is to create a safe space for fellow Lymies to stay up to date on Lyme related information while building out meet-ups around our podcast for our community to connect in person (we held our first one in Chicago last week and brought together 60 Lymies!)

If you enjoy our podcast and want to see a breakthrough in Lyme disease research, please consider donating to Alex’s fundraiser for Global Lyme Alliance, HERE.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with us on Instagram at @alitmoresco and @saraiken.

 

How Chronic Lyme Disease Changed My Life

by Skye Cowie

How a professional athlete at the start of her career was sidelined by chronic Lyme disease

People always say that life can change in a blink of an eye, but I never truly understood that quote until it happened to me. One year ago today, December 1, 2016—after six years of searching for a diagnosis—I was diagnosed with chronic Lyme disease. I had been bitten by a black-legged deer tick when I was 12. For those reading this who don’t know me, I’m a 19-year-old professional athlete from North Carolina. I started playing soccer when I was 5 years old and loved every minute of it. Unfortunately, by age 13, I had to give it up due to chronic pain.

The diagnosis was a pivotal turning point for me, since I was lucky enough to discover a new sport called freestyle soccer. This was something I was able to practice on my own time, when I was physically able, without feeling pressure from others. My career in freestyle soccer has since presented me with amazing opportunities and I now have over 70,000 Instagram followers.

I’ve had amazing experiences working with brands like Adidas, Samsung, Canon, Puma, and even former First Lady Michelle Obama.  Due to my social media presence, I came to feel a certain obligation to speak out about my seemingly invisible illness, and to shed some light on what has, in fact, become a global pandemic.

When I was 12 I found a tick on my hand and was assured repeatedly that I was fine because I lacked the typical Lyme disease symptoms, a fever or bulls-eye rash. Gradually, my health deteriorated. I started with debilitating knee and back pain. Later symptoms included migraines, memory fog, chronic fatigue, and dizzy spells. I kept telling my parents that something was wrong with me, and they could see it for themselves. My light went out. My mom was adamant at every medical appointment that I had Lyme disease, but she was consistently ignored by the doctors.

Until I was 18 I seemed to spend all my time visiting every kind of specialist trying to discover the cause of my chronic symptoms. It became an exhausting, not to say hopeless, routine. Starting with my pediatrician, I was given brain and spinal MRI’s, multiple spinal X-rays and ultrasounds. I moved on to an orthopedic surgeon who injected steroids in my my knee. Then there was my primary care doctor who told me I was just a typical tired teenager, and then the acupuncturist, a chiropractor, endocrinologist, optometrist, immunologist, gynecologist, rheumatoid specialist—all with nothing meaningful to report— and, finally, a neurologist who told me that there was nothing I could do. I would just have to live with daily migraines.

I felt worse and worse. My days consisted of school—when my friend would have to carry my book-bag—then coming home and sleeping for hours, waking up to do as much homework as my fogged brain could handle, eating dinner and going back to bed again.

My only relief was in sleep. I had no social life. Worse, perhaps, was that I had no friends who understood what I was going through. It got so bad I decided during my junior year that I would graduate high school early, halfway through my senior year. By that time, I would have enough credit hours to do so. Getting up for school and faking a smile to hide my suffering had become impossible.

My mom started spending every waking moment looking for doctors who would take us seriously. Finally, her persistence paid off. We went to an out-of-network functional medicine doctor who ran full body tests on me. Although it wasn’t the news I wanted to hear, I finally got a diagnosis: chronic Lyme disease. I was also diagnosed with intestinal impermeability and celiac disease, but those ailments will have to wait for another blog post.

The days and weeks after my diagnosis were the hardest. I had never felt so isolated and alone. The lack of empathy from those closest to me was the hardest part. Most doctors don’t think Lyme disease exists, never mind trying to educate my egocentric teenage peers that it does. Last December not one of my friends would sympathize with the news I had just been given. They brushed it off and treated me as if I would be okay again in a few weeks. Nobody believed I was sick. Those closest to me didn’t know about half of the things I went through daily. Social media is a mask; it’s easy to live a beautiful life online. But it doesn’t give visibility to one’s real life behind the scenes. I have never posted a picture or list of all the pills I have to take every day. I have never mentioned losing my best friend over the disease. Nor the days and nights I’ve spent crying out of hopelessness.

Life is never what you think it will be. This truth is hard for all of us to accept, especially if you’re a teenager. Four months after my diagnosis I got accepted into my dream university. My celebration was short-lived, though, when I came to understand that I wouldn’t be healthy enough to attend. When August rolled around I made a compromise. Currently, I’m enrolled in two online classes that I can attend from my bedroom. This is my reality. The past year I have found out not only a lot about myself but a lot about the lives of those around me. Although most of my friends still don’t understand, I stopped letting that bother me. Now I focus on the few friends who check up on me and take time to understand chronic Lyme disease.

Although I am only starting my battle with Lyme, I feel as if I’ve been fighting it my whole life. It’s hard to remember days where I have not felt pain. Not a second goes by when I don’t feel Lyme’s debilitating effects. Some days I’m anchored to my bed with sadness. But on other days I feel more alive than ever. Before my diagnosis, I felt as if I was living my life on the sidelines while everyone else enjoyed the game. I have a long journey ahead, yet I’m thankful for this second chance to get well and play again.

I appreciate every moment I am fortunate enough be alive. I believe that you can get through the worst in life if you’re surrounded by the right people and have hope that things will get better. I refuse to let Lyme disease take control my life. I am going to fight it with everything I have.


Skye Cowie is a 19-year-old professional freestyle soccer player living in North Carolina. Follow her @skycowie on Instagram.

Chronic Lyme Disease Series: Bryce’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

Doctors tested me for MS, ALS, Lupus, Lyme disease and vitamin deficiencies but everything kept showing up normal.

When I was 18 I got very sick with a flu-like illness in the summer that didn’t go away. Months later, doctors found campylobacter (a bacteria that infects the intestines) in my digestive track and diagnosed me with Gerd and IBS. I was put on antibiotics for a few weeks and symptoms subsided. Since then I’ve experienced on and off IBS issues that gradually got worse over the years. I developed a food intolerance to both gluten and dairy. It wasn’t until the early spring of 2016 things got really bad.

I had just finished my latest bodybuilding competition and during my whole 20-week prep, I knew something was off. I contributed it to dieting and training too hard for the show. I thought after the show was done things would go back to normal but they didn’t. I developed bad fatigue and the following summer I got shingles. That’s when things really took a turn for the worse.

I had just finished my latest bodybuilding competition and during my whole 20 week prep I knew something was off.

Bryce at a bodybuilding competition

My face and legs began to tingle and twitch and felt like there were bugs crawling on my shins. I developed balance and cognitive issues. I also had floaters in my field of vision. I gradually became weaker but loved the gym so I still kept it up (to this day) but had to stop competing in bodybuilding. I also developed shooting pains in my legs as well as night terrors and anxiety. Doctors tested me for MS, ALS, Lupus, Lyme disease and vitamin deficiencies but everything kept showing up normal.

It wasn’t until I spoke to a lady in Brandon, Manitoba (Canada) who has Lyme disease and she mentioned the testing can be extremely inaccurate and doctors often misdiagnose patients who have Lyme disease. I ended up seeing a naturopath in Winnipeg, Manitoba (Canada) who thought my story fit Lyme disease. He suggested I send my bloodwork to IGeneX labs in California which is a lab that specializes in testing various Lyme strains and its co-infections. I ended up paying $1800 CAD for the IGeneX test and about four weeks later my result came back positive for Lyme and the co-infection Babesia (an infection caused by a malaria-like parasite that infects red blood cells). I then had to travel to Vancouver, BC (Canada) to see a Lyme-literate doctor who could properly treat me. He also clinically diagnosed me with the co-infection Bartonella (bacteria that live inside cells that can infect humans and a wide range of other animals and causes cat-scratch disease, endocarditis, and several other serious diseases in humans).

Bryce’s Symptom Breakdown:

First onset symptoms: fatigue, digestive issues, shingles, tingling, and twitching.

Recall tick bite/bullseye rash: no; no rash

Diagnosis of Lyme Disease: none, but suspected MS, ALS, vitamin deficiency

Chronic Lyme Disease symptoms: fatigue, eye floaters, balance issues, tingling, twitching, digestive issues, night terrors, depression, weakness, cognitive problems

Lyme Disease & co-infections diagnosed by: blood test through lab in the USA (IGeneX)


The Chronic Lyme Series: Bryce’s Story

Bryce lives in Bandon, Manitoba, Canada. At the time of writing Bryce had been receiving treatment for almost four months, and with a lot of ups and downs, he is optimistic that he has seen some improvement. 

TURN YOUR ANGER INTO ACTION

By Lori Dennis

I’ve been in the Lyme world for several years now. And if there’s one palpable emotion that reverberates throughout this community … it’s anger.

For reasons we all understand, Lyme sufferers and caregivers are not only confused, grief-stricken, and anxious. But we are also angry. Outraged might be an even more appropriate description. I hear it everywhere I turn.

The reasons for being angry are inexhaustible. As a mother whose son has been sick for a long time now with Lyme, as an author, speaker, and activist in the Lyme world, I understand and live with this anger every single day.

At the same time, I also know, without question, that anger can be personally destructive unless it is channeled into something actionable and substantive.

To deal with my own personal anger, I set out to write a book about our experience. It was my way of channeling my feelings of being overwhelmed. It was my way of helping to make sense of all that I learned, and providing a platform for others to tell their stories and share their perspectives. In short, writing was the best way I knew not to drown in my own indignation.

To best manage the overwhelming emotions we experience as both Lyme sufferers and caregivers, the healthiest thing we can do is channel our anger into action.

In the field of psychology, we call this sublimation – turning socially unacceptable impulses and feelings into ones that are more positive.

I don’t believe in repressing our anger because it absolutely needs to be felt. It is really to our own personal benefit to transmute it from a chronic feeling of negativity to positive and concrete endeavors. If we don’t, we can be subject to detrimental physical and psychological effects. Without a constructive course of action, anger can heighten our anxiety, deepen our depression, increase our blood pressure, and cause a myriad of other symptoms.

So, rather than letting anger eat us alive, we need to let it fuel our positive actions and provide us with the motivation, power, and drive necessary to get what we want and so clearly deserve.

The best strategy is to direct our energy towards a specific task––any task that can help you feel like you’re part of a solution. I recognize that it’s hard to do much when you’re feeling unwell. But remember, your actions don’t have to be heroic or superhuman. Any contribution you make will help you to feel connected to this mission for medical justice.

You can call or write to your local politicians. Bring an evidence-based Lyme article (or two) to your next medical appointment for your doctor to read. Join a Facebook support group so that you have an outlet to vent your anger with those who ‘get it’. Read blog posts on the subject to feel inspired and take comfort in knowing that advances are being made in the Lyme community. Start your own blog to share your experiences, tips, and learning with others. Follow the work of Lyme activists that you respect and trust. Channel your emotions into a creative endeavor––art, music, fiction, poetry––wherever your talents lie.

If you happen to have even more energy, volunteer at or even create a local event––an information seminar, a panel discussion, a town hall meeting––to educate the general public about Lyme disease, so that they won’t find themselves caught as unaware as you might have been. Creating the experience of community is the most healing action we can undertake.

Above all, let your voice be heard. Remember, our anger turned into concrete action will ultimately effect measurable change. Make an effort to connect with like-minded people who understand what you’re experiencing. This social connection will ameliorate your feelings of isolation, anger and despair.

There is always plenty of work to do in the Lyme world. Plenty of people to educate about Lyme awareness and tick avoidance. There are plenty of things to do that can propel us toward a new reality where all doctors are ready, willing and able to support us in our mission.

I hope that day comes soon. In the meantime, I will get back to the work at hand and channel my anger into continued advocacy for my son … and for all those who are suffering with this illness.


lori dennisOpinions expressed by contributors are their own.

Lori Dennis, MA, RP is a Registered Psychotherapist in private practice and the author of LYME MADNESS, named #1 NEW RELEASE in Immune System Health on Amazon. LYME MADNESS is available on Amazon. For more information, go to lymemadness.ca and loridennisonline.com. 

Join Global Lyme Alliance in taking action against Lyme disease. Click here to #BePartOfTheCure

Highlights from ILADS Boston 2017

by Jennifer Crystal

A Lyme Warrior’s take on ILADS Boston 2017

Tick-Borne Diseases: The Global Perspective

 

ilads

This past weekend, November 9 through 12,  I had the opportunity to attend the International Lyme and Associated Diseases Society (ILADS) conference in Boston. For four days I woke up at 5:30 a.m. so as to be ready for even the earliest sessions, where I spent hours learning about topics such as hypothalamic and pituitary function, extracorporeal photopheresis, and mycotoxin-induced immuno suppression. You would think so much medical jargon would cause a mental meltdown in a Lyme patient such as myself.  But the truth is, I loved every minute of it. Even without a degreed physician’s grasp of the science, I was able to glean the big picture of the conference, which was inspiring and empowering, and filled me with hope. I left feeling invigorated.

As a Lyme warrior and a writer, I strive to serve as a communication liaison between doctors and patients. I hope to make patient narratives accessible and meaningful to physicians, and I try to translate scientific material into readable layman’s terms. So, let me  share with you my overall takeaways from the ILADS conference:

Tick-borne illness is a world-wide problem

The theme of this year’s conference was “Tick-Borne Diseases: The Global Perspective.” Medical professionals and patient advocates came from 20 countries and 41 states including Alaska and Hawaii, and presenters spoke about the latest research and statistics from research institutions in North and South America, Europe, Africa and Australia. I learned about strains of  Borrelia—the bacterium that causes Lyme— in Russia and Iran. Brazil has its own exotic tick-borne illness that mimics Lyme, called Baggio-Yoshinaro syndrome. Worldwide, there is an urgent need for research and better testing, but the good news, according to Dr. Christian Perrone, Professor of Infectious and Tropical Diseases on the Faculty of Medicine Ile-de-France Ouest, is that awareness is spreading in both the public and medical sectors. There is some exciting treatment research being undertaken, too. Dr. Omar Morales, founder of Lyme Disease Mexico, is taking a hematological approach, looking at ways to remove bacteria from the blood.

We still need better diagnostic tests, but some advances are being made

Current tests for Lyme disease are unreliable. Dr. Brian Fallon, Director of Columbia University’s Lyme and Tick-Borne Disease Research Center, pointed out that the standard two-tiered ELISA and Western Blot test, which only has a 40% accuracy rate, was developed in 1994—10 years before there were iPhones, and years before we even had email. In his talk “The Good News About Lyme Research,” Dr. Fallon referred to testing as a “fishing expedition.” The ILADEF Power of Lyme Award recipient, activist Jenna Luché-Thayer, said that beyond faulty diagnostic tests, there are also problems with spotty, misleading surveillance; nebulous medical coding; misinformed policy; insufficient research; and, of course, politics. Researchers are working on new tests,  including one that is cellular based, and one that looks at DNA sequencing, which would allow doctors, in Dr. Fallon’s words, to “cast a wider net.” The DNA sequencing test can identify an unknown pathogen in several days. Moreover, scientists are working on vaccines, and are trying to genetically engineer mice to produce Borrelia-killing antibodies. “There’s lots of reason for hope,” Dr. Fallon said. “Science is bridging the great divide.”

We need an integrative approach to treatment

Patients often ask me, do you recommend taking antibiotics? Or going the natural route? I always respond that what worked best for me was a blend of Western and Eastern modalities, known as Integrative Medicine. Lyme is a bacterial infection, and antibiotics kill spirochetes. In my experience, homeopathic remedies, nutritional supplements, diet, and other therapies like cranial sacral or neurofascial processing are adjuncts only that can complement but not replace the need for FDA approved medication. The lectures I heard at ILADS reinforced the idea that the best approach to treating tick-borne illness is a holistic one, which incorporates antibiotic treatment, immune reinforcement, nutritional supplements, and lifestyle changes that support well-being and detoxification.

In his talk on eliminating infection, Andrew Petersen, DO, Chief Physician and Founder of  Whole Earth Medical Group, Utah, outlined a history of medical theories. The Miasma Theory, accepted from ancient times through the 1880s, postulated that dirty air, water, and bad energy cause illness. We then had Pasteur’s Germ Theory, which posited that specific microorganisms are the cause of specific diseases. Then there was the Béchamps Host Theory that illness is caused by a host having insufficient defense to pathogens.

Dr. Peterson called all of these theories “true, but not true enough; and wrong, but not completely wrong.” Modern Combined Theory looks not just at the pathogen, but also at the host. Infection is part of the picture, but so is the immune system’s ability to respond to it, which can be influenced by body toxin levels. The standard paradigm for treating Lyme disease is to try to eradicate the infection, but the Infectious Diseases Society of America (IDSA) and ILADS have long argued over how long that should take.

Conversely, Dr. Petersen contends, complete assessment of Lyme should include infection, immune dysfunction, and toxins (such as mold, mercury exposure, and toxins built up in the body and brain by both the infection and its subsequent die-off of infection). Other speakers also called for such an integrative approach.

We also need to look toward precision medicine, a model that customizes care for individual patients, especially since every case of tick-borne illness is different and there is no set treatment protocol. Understanding infection, inflammation, and autoimmunity will helps doctors to “make personalized medicine, so we can better treat our patients,” said John Lambert, MD, PhD, of the Dublin, Ireland Infectious Disease Clinic.

Everything from research to diagnosis to treatment should be patient-centric

Patients are the sick ones, so it only makes sense for their experience to inform research, diagnosis and treatment of tick-borne disease. As Dr. Lambert said, “We need to treat the patients, not the laboratory tests”—especially when those tests are so unreliable.

In her presentation “The Value of Using Big Data in Lyme Disease,” Lyme Disease.org’s‘s CEO Lorraine Johnson J.D., M.B.A., called Lyme “a researched orphaned disease.” The last federal treatment trial for Lyme was funded over 15 years ago. LymeDisease.org has created MyLymeData, where patients can register and provide information that can serve as a research platform to affect quality of care and policy change. Johnson said, “Patient registries are a research game changer…allowing people to act based on best past practice, not best available evidence.”

Another area that needs a patient-centric shift is health insurance. Medical treatment should be determined by physicians, not insurance companies. This was something Sheila Statlender, Ph.D., of the Massachusetts Lyme Legislative Task Force, worked hard for. The Task Force got an act passed in 2016 that requires Massachusetts insurance companies to cover long term antibiotic therapy for the treatment of Lyme. While the legislation has its loopholes, it’s a model toward more sensible statutes in other states. In her presentation “Update on Local Lyme Activism,” Dr. Statlender said that such legislation “empowers licensed physicians to use their clinical skills appropriately,” and that’s good news for patients!

Though there is still much work to be done, Lyme awareness and research have come a long way. Nowhere was that truth more evident than at the ILADS conference. Whether or not you know what the glymphatic system is or understand why chemokine CCL-19 remains elevated among patients with post treatment Lyme doesn’t matter. For patients, what matters most is this: there were 750 people at this year’s ILADS conference. That’s 750 researchers, doctors, and advocates on the front lines of tick-borne illness, working every day to make life better for patients like you and me.


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

Video: GLA CEO Scott Santarella’s speech at the 2017 GLA NYC Gala

Scott Santarella’s speech from the gala highlights GLA’s mission and some notable accomplishments in the past 12 months

Good evening. I am Scott Santarella, CEO of the Global Lyme Alliance. It’s an honor to be here tonight with all of you. To those of you who are back once again, thank you for your continued support. For those who are new, welcome to Team GLA.

A year ago, I introduced myself as the new CEO of Global Lyme Alliance and talked about the injustice associated with Lyme disease—the lack of disease awareness, inadequate diagnostics and limited treatment options for patients—all of which, we agree, are completely unacceptable!

I also shared with guests the responsibility we all share to do something when we see inequities in society, especially as it related to underfunded, underserved, and often stigmatized diseases.

And most unequivocally when the health of children and families are at risk, of which, all these, Lyme disease is very much guilty.

As we promised, and thanks in part to your support, GLA has been busy putting our words into action.

Over the last 12 months we have been tackling the injustices associated with Lyme disease with great success and measurable impact, best described by these numbers:

From 2 to 11

The number of countries from which GLA receives donor support, evidence our impact is worldwide.

From 22 to 50

The number of states, yes, all 50, from which GLA receives donations, proof positive Lyme is everywhere.

From a few hundred to 12,000

The number of elementary and secondary school teachers across the U.S. that have been given direct access, free of charge, to our Lyme disease prevention and education curriculum, further evidence of the need to educate nationally.

From 40,000 to 100,000

The number of children and families GLA has helped become tick and Lyme aware through our summer camp program offered at 56 summer camps in seven states and growing.

From $1 million to $2 million

The amount of grant dollars, since January 2017, GLA has committed to scientists focused on researching new ways to combat this disease.

From 2 million to 20 million

The number of media impressions GLA has had over the last 12 months through our social media platforms, educational programming, and awareness outreach efforts.

No doubt, we are all in this together … GLA is just getting started …

Recently, we hired a Chief Scientific Officer, Dr. Tim Sellati, who brings to GLA and our research-based mission 25 plus years experience in Lyme research, extensive disease knowledge and a track record of building bridges among scientists, clinicians, industry and government.

We held a successful fundraising event in Chicago in August which will become an annual event, and we have our sights set on major events in Texas, California, and Florida to further our national impact.

Lastly, we received more than 30 research grant applications this year … an indication of interest among the research community to help us solve the challenge of Lyme disease and reinforcing the need for resources to support their efforts.

This is the moment … now is the time to invest in GLA and our mission!

We have the leadership of our Board of Directors to set the strategic plan.

We have the commitment and dedication of our staff and volunteers to enact change.

And … we are all driven by a passion to erase the injustice for those suffering from Lyme and other tick-borne illnesses.

Together we will shift the paradigm of this disease from uncertainty, misunderstanding, and helplessness … to clarity, comprehension, and hopefulness … on a pathway toward a cure. Thank you for joining us, thank you for your support, and thank you for being part of Team GLA.

gla

Click here to donate to our year-end campaign #BePartOfTheCure

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