Kasey Passen was driven to help others in the fight against Lyme disease
Some people have dreams about changing people’s lives but, through no fault of their own, never have an opportunity to carry them out. By contrast, Kasey Lynn Passen, 37, filled with love and the power for doing good, was determined to make people aware of the escalating incidence of Lyme disease in Chicago and outlying areas. Her passion stemmed from her own experiences with the disease and her wish to prevent others from going through the suffering she had. “Too many people are unaware of the risks they face,” she said.
Sadly, the disease took her life yesterday, September 4. We at Global Lyme Alliance condole with Kasey’s family and friends on the passing of such a vibrant, creative and loving individual.
I met Kasey a few weeks into my tenure as CEO of Global Lyme Alliance. We discussed her desire to hold an event in Chicago to raise money and awareness for tick-borne diseases. GLA had never done an event in the midwest before, but Kasey made that conversation a reality— first with an “Evening of Art and Education”in March 2017, followed by the highly successful “Sublyme Soirée” fundraiser later that summer.
Thanks to the incredible efforts of Kasey and her fellow committee members, the second annual Sublyme Soirée was held two weeks ago. It was an huge success attended by 300 individuals who enjoyed healthy food (another of Kasey’s passions) while also receiving crucial information about the risk, symptoms and prevention of Lyme disease and other transmitted co-infections.
Kasey once told me she suspected that she had suffered for many years before being accurately diagnosed, but had been told that her full body pains were due to fibromyalgia. Despite this “diagnosis,” she felt progressively worse, suffering from extreme exhaustion, alarming night sweats and cognitive problems such as brain fog and severe headaches. She sought medical help, but with very few Lyme-literate doctors in Chicago, she was only diagnosed about three years ago.
“It took me a long time to find answers to my own health questions,” Kasey said. “My hope is to spread awareness and education of Lyme so that people will be able to recognize the common signs of symptoms and know the right questions to ask their doctors. Lyme is very misunderstood by the medical community and we must advocate to get the right diagnostic tests and treatments.”
With the tragic loss of Kasey Passen, GLA finds further motivation to cure Lyme disease and reduce the collective suffering. We can never replace such a zealous and compassionate member of Team GLA, but let’s hope Kasey’s stellar example will be emulated by others with their own tales of Lyme to tell.
Global Lyme Alliance is thrilled to be the first Lyme organization named an official charity partner of the TCS New York City Marathon, starting with the 2018 race. The TCS New York City Marathon provides a dynamic platform for GLA to raise funds and increase public awareness about the escalating risks of Lyme disease.
We are excited to announce the carefully selected inaugural team of 5 Lyme warriors who will represent Team GLA on Sunday, November 4, 2018. Please join us in supporting and celebrating our runners throughout their memorable journey to the iconic finish line.
Jesse Ruben, Brooklyn, NY
Singer/Songwriter, 3X Marathon runner on behalf of GLA and Team GLA Team Captain
Why I run: I run to prove to myself that I can. But I also run to represent the huge number of people with Lyme who are still dealing with their symptoms. I feel a huge responsibility to do whatever I can to help the people in this community. Part of that means spreading awareness and raising money. The marathon is a perfect way to do that.
If you had told me a couple of years ago that I’d be training for a marathon, there’s no way I would’ve believed you. I was spending most of my time in bed. My fatigue was unbearable. The fact that I was fortunate enough to find a treatment that was effective, and to be in remission, is a miracle. I am so honored to be the team captain, but even more than that, I am just so excited that we finally have an official team. Two years ago, it was me and one other person, last year it was only me. There are some marathon charity teams that have hundreds of members that raise millions of dollars every year. I see no reason why the Lyme community shouldn’t have that as well. To me, this is just the beginning. I can’t wait to see what happens in the upcoming years. It’s very exciting.
Cell Culture Scientist, Certified Yoga Instructor, wife and dog mom who loves spending time in the mountains
Why I run: Diagnosed in 2016 & spent two years fighting for my health, spreading awareness to friends, family and anyone who will listen!
I run because it just feels good for both my body and my mind. I don’t need any fancy gear and can just step outside my front door. I am looking forward to being a part of a team for a cause that I care deeply about and to participate in such an electrifying city like NYC! My goal is to simply finish and to maintain my health all while raising awareness and funds for an amazing and paramount organization! I am honored to be representing the Lyme community and I now understand the power of representing something bigger than myself.
Senior Software Engineer, dad, husband and 110-time marathon runner
Why I run: I run with Team GLA so that I can help raise funds and retain a part of my identity by refusing to let Lyme dictate what I can or can’t enjoy.
I have been fighting Lyme for the last 6 years. To say it is my cause is an understatement. I live it every day. Although I have run over 110 marathons in my 30 years running, I have been hampered — to put it mildly — over the last 6 years since contracting Lyme disease (with many co-infections). I have gone on stretches where I just cannot run even a step. I run and often walk (due to Lyme) to show Lyme and the world that although you can make me ill, you cannot rob me of my love of running. My goal for the New York City Marathon is to have fun and get as far as I can before they pull me off course. I will likely have tears in my eyes as I cross the 59th Street Bridge as the course traverses back into Manhattan as at that point, with the knowledge that I am doing my part in my battle with Lyme, I am also more than halfway through showing Lyme that it cannot take away my passion that is running and being an athlete and participating in meaningful endurance events.
Why I run: I’m running for Team GLA in memory of my Dad who lost his battle with Lyme-induced ALS in 2013.
I started running to help me cope with the overwhelming grief I felt after losing my dad. I was in a bad place, depressed and feeling lost. Running was a place to be alone with nature and appreciate all the beauty around me and an opportunity for me to meditate and improve my health. I started feeling better and found solace in running so I kept at it. Running with Team GLA to raise money & awareness for Lyme means so much to me since one of my dad’s final wishes before he died was for me to tell others about Lyme so they wouldn’t have to suffer like he did. I am most looking forward to climbing up to the Statue of Liberty crown on my birthday before the race. My goal for this year’s marathon is to enjoy the experience and share my dad’s Lyme story with as many people as possible.
Bank Examiner, recently moved to NY from Washington DC and is running his 2nd marathon
Why I run: I was diagnosed with Lyme disease when I was 21. While my symptoms have subsided in recent years, there is so much to be done to lessen the impact on those affected.
As someone who struggled with Lyme, Team GLA immediately stood out as the perfect fit. My hope is that by running on behalf of GLA, I can raise fundraising and spread awareness to combat Lyme and other tick-borne disease. I believe that supporting GLA is a great way to fight this disease, and to contribute to tangible results. As someone who has been plagued by this horrible and often misunderstood disease, I have been passionate about spreading awareness about Lyme. I run because it keeps me in shape, it gets me outdoors, but most importantly it makes me feel great. My goal is to finish the 2018 NYC Marathon under 3 hours and 15 minutes! I’m most looking forward to the magic of marathon day in the city. There is a special energy among runners and spectators alike, and I’m excited to be a part of it.
Meet the Researcher is a blog series to introduce GLA-funded Lyme disease researchers, and in this case, GLA’s Chief Scientific Officer.
NAME: Timothy J. Sellati, Ph.D.
TITLE: Chief Scientific Officer
Dr. Sellati has more than 20 years of Lyme and tick-borne disease research experience. He has published more than 40 peer-reviewed infectious disease papers, nearly 20 of which are focused on Lyme disease. As GLA’s Chief Scientific Officer, he leads GLA’s research initiatives to accelerate the development of more effective methods of diagnosis, the treatment of Lyme and other tick-borne diseases, and the search for a cure. But what makes him tick?
WHAT MOTIVATED YOU TO FOCUS ON TICK-BORNE DISEASE RESEARCH?
When I began pursuing my Ph.D. from the State University of New York at Stony Brook, I thought I would focus on cancer biology and tumor cell metastasis. Through serendipity I instead found myself training with Martha Furie, Ph.D., a renowned cell biologist, and Jorge Benach, Ph.D., who along with Willy Burgdorfer, Ph.D., discovered that the causative agent of Lyme disease Borrelia burgdorferi is a bacterial spirochete transmitted by the bite of a black-legged (“deer”) tick.. Although the study of bacteria entering and then escaping from the bloodstream after a tick bite sounds worlds away from studying tumor cell metastasis, there really are some remarkable similarities.
For instance, small cell lung cancers spread via the bloodstream to the liver, lung, bones and brain, but not to other organs that also receive blood. In a similar fashion, B. burgdorferi spirochetes leave the site of inoculation and travel to the joints, heart, and brain, but not to other organs also receiving blood. I wanted to explore and understand why that was so and what controlled where the spirochetes (like cancer cells) could and could not go in the body. I also wanted to determine why certain immune cells responsible for killing and clearing B. burgdorferi instead invade the joint while a different type of immune cell invades the spirochete-infected heart.
WHY DID YOU DECIDE TO MOVE FROM THE LAB TO GLOBAL LYME ALLIANCE?
Joining GLA allows me to make a greater impact, beyond my own academic research program, in helping to solve the mystery of Lyme disease and better understand its impact on patients. I’m most excited about the opportunity to engage scientists and physicians willing to share and learn from one another, willing to approach their work in a cross-disciplinary, inter-departmental and cross-institutional manner and who are willing to alter their notion of “how the world works” when presented with experimental evidence that runs contrary to it. In essence, GLA enables me to serve as scientific ‘cupid,’ supporting young, mid-career, and senior research scientists and physicians who are inclined to “color outside the lines,” challenging conventional thinking and approaches and hopefully getting us to the finish line—preventing future cases of tick-borne illness and curing those individuals already infected.
What drew me to GLA was its reputation. Reviewing its roster of Scientific Advisory Board members, I saw many faces and names with whom I was familiar and had interacted with during my long research career. I was also excited to see the caliber of scientists and physicians whose research the organization had funded in the past or is currently funding.
WHAT IS YOUR VISION FOR GLA’S RESEARCH PROGRAM?
GLA’s goal is to impact patients, and I believe the best way to do that is through research. My strategic vision for GLA is to identify and help direct funds to projects that will drive the development of more accurate and accessible diagnostic tests, treatments for chronic, or persistent, Lyme disease, and a cure. I believe these goals are realistically attainable.
Tupin E, Benhnia MR, Kinjo Y, Patsey R, Lena CJ, Haller MC, Caimano MJ, Imamura M, Wong CH, Crotty S, Radolf JD, Sellati TJ, Kronenberg M. Proc Natl Acad Sci U S A. 2008 Dec 16;105(50):19863-8. doi: 10.1073/pnas.0810519105. Epub 2008 Dec 5.
Kinjo Y, Tupin E, Wu D, Fujio M, Garcia-Navarro R, Benhnia MR, Zajonc DM, Ben-Menachem G, Ainge GD, Painter GF, Khurana A, Hoebe K, Behar SM, Beutler B, Wilson IA, Tsuji M, Sellati TJ, Wong CH, Kronenberg M. Nat Immunol. 2006 Sep;7(9):978-86. Epub 2006 Aug 20.
Highlights from GLA’s 8th Annual 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.
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.
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.
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 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.
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:
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.
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.
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.
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 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.
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 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.
I started treatment for Lyme, and now I feel worse! Is this normal?
Yes. As strange as it may sound, this is actually a good sign. It means the medication is working. What you’re experiencing is called a Herxheimer reaction: the antibiotics are killing off bacteria faster than your body can eliminate them, making you feel worse before you feel better. While Herxheimer reactions—often referred to as a “herx”—are tough to deal with, they usually don’t last too long. The first time I had one, my doctor told me to “stay the course”, and I’m glad I did. If your herx is unending or unbearable, you may want to talk to your doctor about “pulsing” your antibiotics—taking short breaks from them, or changing them.
I have mostly had neurological symptoms, but now I suddenly have fatigue and joint pain. Why did that happen?
Lyme bacteria, called spirochetes, are tricky. They spiral away from antibiotics in an effort to evade the treatment. This means they might burrow into new places, or they might move deeper into places they’ve already been. Without antibiotics, though, the spirochetes will eventually get to all those places and then some, without anything fighting them off. Eventually the antibiotics will win out, but in the meanwhile, you may experience new symptoms. Fatigue is especially common, because your body is laden with bacteria that is being killed off (a good thing!), and because your body is working so hard to fight the infection.
Spirochetes also love to hide out in scar tissue. If you’ve had an injury to a particular joint, you may feel more swelling or pain in that area than others. I tore my ACL a few years before I started Lyme treatment. The rehabilitation took much longer than expected because Lyme was living in the scar tissue around the knee. I’ve also had intense migraine headaches over my left eye. I had several surgeries on both eyes as a child, and my doctor suspects I have more scar tissue around the left, causing focalized pain.
Be sure to tell your doctor about new symptoms—especially if you develop neurological impairments that you never had before, as this could be a sign that the infection has crossed the blood-brain barrier. It helps to keep a daily log so that you can track your symptoms and accurately report them to your doctor.
I have spoken with many people with chronic Lyme disease who were on years of antibiotics and did not do well until going a natural route. Do you think it’s possible to treat Lyme disease without antibiotics?
My short answer is no. The long answer is that everyone has a different experience and reacts differently to treatments. Some people only get well with antibiotics. Some people start on antibiotics and then add or switch to naturopathic treatments. As I’ve said in the past, it all depends how long a patient went undiagnosed, whether their Lyme is complicated by co-infections, whether the infections have crossed the blood-brain barrier, and how a patient’s immune system responds to various treatments. Only you and your Lyme Literate Medical Doctor (LLMD) can decide the best course of action.
In my experience, the naturopathic route alone did not treat Lyme. For me, it took a combination of Western and Eastern modalities. Lyme is a bacterial infection, and antibiotics kill bacteria. I would not treat other bacterial infections, such as pneumonia or a urinary tract infection, solely with naturopathic remedies. I apply the same theory to treating Lyme. I take homeopathic supplements to help boost my immune system, replenish nutritional depletion, and augment the work of pharmaceutical medication. I also rely on adjunct therapies such as neurofeedback and Integrative Manual Therapy.
However, none of these therapies would have helped on their own. Before being diagnosed with Lyme, I was seeing a naturopathic physician who treated me with Chinese herbs, dietary restrictions, and acupuncture. After two years of these treatments, I showed only nominal improvement. That was because there was an underlying bacterial infection that wasn’t being adequately treated. It was the naturopathic physician who recommended I see a Lyme specialist; he knew he’d maxed out his ability to help me, so he sent me to someone else who could. That, in my opinion, is the sign of a good doctor.
How do you live out in the great outdoors without fear of reinfection? My fear of this is all-consuming. I used to be an outdoorsy person, and now I’m scared to walk on grass. A sidewalk littered with leaves makes me so overwhelmed that I’ll walk in the street.
This a great question that merits its own post, coming soon. Stay tuned!
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 firstname.lastname@example.org
by Scott Santarella, CEO, Global Lyme Alliance
pictured here with GLA teammate, Lindsy Brophy
I need your support for Team GLA and Tough Mudder
On Sunday, July 23rd I will Captain the Global Lyme Alliance Tough Mudder team in Bethpage, Long Island, raising funds and awareness to support GLA’s efforts to eradicate Lyme disease. Part of my incentive to take on the challenge of the Tough Mudder was to support the tens of thousands of patients who struggle each day dealing with the insidiousness of Lyme disease, and as an excuse for me to get my you-know-what into shape!
I went so far as to exercise on LIVE TV! That alone should tell you how important this is to me. If you want a laugh, check me out on this Good Day New York segment promoting GLA and our team.
How You Can Help
You’ve witnessed me crawl, jump, and try to catch my breath – now it’s your turn to help.
To make a donation to support me and Team GLA, CLICK HERE.
To be part of the fun by joining Team GLA or participate in a Tough Mudder anywhere in the county on behalf of GLA, CLICK HERE.
Thank you all in advance for your consideration of support and I will report back on how sore I am with photos of me full of mud on July 24th!
Is Lyme disease ever really gone from your body? Relapsing is a constant reminder and reality that the bacteria are still lurking.
I am writing a memoir about my journey with chronic tick-borne illness. I avoided work on the manuscript for the last month not just because I was busy, but because I was scared. I’d hit the point in the story leading up to my 2007 relapse and I was terrified to write about it. This isn’t to say other parts have been easy to write; it can be difficult to revisit the angst and pain surrounding crushing fatigue, Herxheimer reactions, and migraines. That relapse looms as the very worst part of my whole journey. Ten years after that low point, relapsing is still my worst fear. It’s a worry many Lymies share.
Writing about the relapse meant I would have to confront that experience head-on. I shared my concerns with a writer friend, who asked what a relapse would look like for me. She hadn’t known me in 2007, and though she’d heard stories of what I’d gone through, she didn’t know the whole story of that period. Had it happened out of the blue? Had something caused it?
Lyme relapse can happen spontaneously, simply because all it takes for symptoms to recur is one dormant spirochete to start quietly replicating in the bloodstream. It’s possible that a Lymie could spend his or her days in a hammock on the beach and still relapse, because we can’t control what leftover spirochetes will do, the same way a cancer patient in remission can’t control when cancer cells start metastasizing again. That said, there are other factors that tend to contribute to Lyme relapse and we do have some control over them.
Because I had been feeling better, I stopped antibiotic treatment in summer of 2006. I continued to do well for several months, regaining so much strength that I was able to do a full workout at physical therapy. I was employed as an editorial assistant for a magazine, and was writing my first book. I still had some limitations, but I felt much better than in my bedridden days, and it seemed I would only continue to do so.
In November 2006, I moved to Vermont. I had been living in Connecticut with my parents for two years, and was ready to regain my independence. Instead of taking a small step, such as moving out on my own in their town, I rushed off to the outdoorsy environment I craved. But I wasn’t ready for that environment, and I didn’t realize that until I was there, five hours from my family and alone. I was not yet ready to ski, especially since my energy was now being spent on chores like food shopping, which my parents had taken care of in Connecticut. I knew how to fend for myself—I’d lived own my own in Paris and Colorado—but I didn’t have the physical stamina to do so in Vermont, not on top of taking care of my health and working. Very quickly, my fatigue returned.
I did my best to push through it, because work had suddenly picked up. On top of my usual writing and editing responsibilities, I was tasked with a huge research project that was far too taxing for a brain compromised by chronic neurological Lyme disease. It wasn’t long before I started experiencing brain fog, insomnia and anxiety again.
Then the muscular and joint aches came back, making it hard to type, and then the migraines, which felled me for whole days at a time. I didn’t have the energy to do laundry or cook, much less run errands. I saw myself headed back to the bedridden state I thought I’d left for good, and the mere idea of that terrified me. I became anxious about that possibility, anxious about not getting my work done, anxious about not being able to support myself, anxious that I wasn’t enjoying the Vermont lifestyle I’d envisioned. Stress, it turns out, is a leading factor in Lyme relapse.
“Getting that stressed out is like walking into a minefield of ticks,” my doctor told me when I called about the resurgence of symptoms. Stress causes a release of cortisol, which can speed up the reproduction of Lyme bacteria. The big move, the overload of mental work, the physical fatigue and the anxiety all created the perfect storm for me—especially because I was no longer on antibiotics. My system had no defense against the spirochetes that came raging back to life, replicating at such a rate that by February 2007 I was back in Connecticut at my parents’ house.
I could not stand the fact that I’d touched health, freedom, and independence, and then lost it all again.
I restarted treatment. It was a long, wobbly road, but eventually I battled my way back to remission once more. This time I took baby steps, moving just a few minutes from my parents, taking on smaller part-time jobs, really pacing myself, ever trying to ward off another crash.
I’ve been working to fend off relapse for a decade now. Even though I’ve gotten healthier and stronger—I moved to Boston, went to grad school, published my first book, started teaching, and started skiing—and even though I have a much better maintenance plan in place, I still fear relapsing. In a way the fear is good, because it keeps me on my toes; it forces me to take care of myself, because I know how severe the consequences can be if I don’t.
When I explained all of this to my writer friend, she said, “Maybe writing about the relapse will be empowering. You’ll feel like you’re taking control over it.” Dubious, I gave it a try. To my surprise, the words have been flowing. I’ve written three chapters about my Vermont downfall. While I haven’t yet tackled the lowest point of my relapse, I’m getting closer to it. I’m learning that the best way to deal with fear is to grab it by the horns.
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 email@example.com
I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.
What medicine and/or supplements did you take?
Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.
How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.
This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.
My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.
I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.
Do you have any communication strategies?
One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?
As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.
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 firstname.lastname@example.org
As we approach Thanksgiving, many of us pause to reflect on why we are thankful.
Without a doubt, the challenges with Lyme remain—better diagnostics and improved treatments are still sorely needed. But there are some things we and others in the Lyme community can be grateful for this year:
More Celebrities Speak Out
Supermodel Bella Hadid and President-elect Trump’s former wife, actress Marla Maples, were honored by GLA in 2016. They joined a growing list of celebrities who are turning the spotlight on Lyme disease, including singer Avril Lavigne; TV personality Yolanda Hadid; basketball superstar Elena Delle Donne; TV producer and author Ally Hilfiger; Daryl Hall; Marisol Thomas, wife of Matchbox Twenty frontman Rob Thomas, among others.
New State Laws Help Lyme Sufferers
Maryland’s first ever Lyme disease law requires healthcare providers and medical laboratories that draw blood for a Lyme test to give patients a written statement explaining the potential for inaccurate test results. In Massachusetts, health insurers must now cover long-term Lyme antibiotic treatment prescribed by a licensed physician.
Increased Research Interest
GLA received a record number of 31 grant requests for 2016-2017 research funding, an 80 percent increase over the previous year. This year’s applications are from researchers at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom. While their areas of research are diverse, it’s clear that the tick-borne disease community is zeroing in on unraveling the complexity of Lyme disease.
IDSA Guidelines Removed from Federal Database
Outdated Infectious Diseases of America (IDSA) guidelines were removed early this year from the National Guidelines Clearinghouse (NGC), a federal database used as a reference for physicians and healthcare practitioners in treating Lyme patients. The guidelines, currently undergoing revision, have for years restricted antibiotic treatment of Lyme patients to between two and four weeks. At present, only the guidelines from the International Lyme and Associated Diseases Society (ILADS) are on the NGC.
Increased Media Coverage of Lyme
FOX5 News aired two specials watched by tens of thousands called “Lyme & Reason: The Cause and Consequence of Lyme Disease” and “Lyme & Reason 2:0: Lyme Disease & The Voices of Change.” In addition, Lyme disease stories aired on WNET/MetroFocus, WBUR/PBS, CBS and local outlets as well as in national publications such as Huffington Post, Science, Town & Country, and others.
Most of All
… we are grateful for the unwavering support of Global Lyme Alliance’s volunteers, donors, and friends. Please help us accelerate progress in the fight against Lyme and join us in our Quest for the Test, GLA’s global effort to raise funds for a critically needed Lyme diagnostic test.
Wishing you and your loved ones a Happy Thanksgiving.
Dr. Harriet Kotsoris, chief scientific officer with Global Lyme Alliance, discusses Lyme disease treatment, prevention, and transmission.
Below is an excerpt from, “Lyme Disease: An Overview”, a podcast with Dr. Kotsoris and Dr. Mayla Hsu, science officer with GLA. Listen to the entire podcast below.
Host: Is Lyme disease treatable? What are some of the common treatments?
Dr. Kotsoris: Lyme disease is what we’d call treatable, the question in everybody’s mind is “Is it completely curable?” In the acute stages, the school of thought is that it is curable with prompt adequate treatment with 3-4 weeks of Doxycycline or Amoxicillin. The longer a person walks around with the disease undetected and untreated the more difficult it is to eradicate. That’s because the Borrelia burgdorferi organism is fleeting in the bloodstream and quickly hides and travels to other organs of the body including the muscles, joints, heart, brain, mostly connective tissue.
It is felt that even in the face of antibiotics these Borrelia burgdorferibacteria may actually become tolerant, not resistant, but tolerant. That means that they go dormant and hide in the tissues only to reactivate at a later date when the body is put under some type of stress. Again, these issues are quite controversial and this is because many feel that although the bacteria may be viable in the body they’re not culturable. In other words, we cannot prove that there are still living bacteria in these patients with post-treatment Lyme disease syndrome. We’re just hopeful that one day we’ll have better detection methods, both early and late to distinguish acute cases in a prompt fashion, which will then lead to a higher success rate of treatment. Also markers for chronic phase of the illness or post-treatment, or post-infectious Lyme disease, to show whether or not there still are viable bacteria left in this patients body.
Host: How is Lyme disease transmitted?
Dr. Kotsoris: Lyme disease is transmitted by a vector, that is an agent that will a pathogen or disease-producing organism from itself to a host. In the instance of Lyme disease, the human is an accidental dead-end host. In the United States as I mentioned before, the disease is transmitted by the blacklegged tick. The tick crawls around, attaches to a nice warm moist area of the human body and then bites the host, and in doing so transmits the bacterium from the tick belly into the bloodstream of the human being. Dr. Hsu will elaborate more as to the adaptations that are required for this to be a successful event.
Host: What are some adaptations that ticks have that allow them to so successfully transmit Lyme disease?
Dr. Hsu: The tick genome was actually just sequenced this past year, 2016. It revealed all sorts of interesting information about why ticks have evolved to be so successful at transmitting Lyme disease. It turns out that ticks have very efficient olfaction, or smell detectors on their sensory organs. They are able to, as Harriet said, crawl around and look for parts of our body that are damp and hidden, and that they can hide. They attach once they’ve found this good spot, like your belly button or between your toes. They have barbed mouth parts, so they efficiently saw through the skin and they and they attach.
Once they’re attached they can’t detach very easily owing to this barbed penetrating mouth part. Once they start feeding, their saliva is like this very incredible chemical soup that has all kinds of components in it that facilitate disease transmission, but it also where’s it’s supposed to facilitate feeding by the ticks. It has an anesthesia so you cannot feel it. They have also in their saliva a blood thinner, so your blood flows better, blood vessel dilators so you bleed better. The tick itself stays attached for up to 36 hours while it’s feeding on you, and its body size can actually increase by 100 times.
Host: How could you protect yourself from Lyme disease?
Dr. Hsu: I think there are, as Harriet said, it all hinges on that tick bite. There are low-tech protection that you can have, which is just simply to avoid tick bite in the first place, tucking your pants into your boots, wearing bug sprays that contain DEET, which repel ticks, checking yourself for ticks and removing them immediately. Another strategy is to wash our clothes in Picaridin or Permethrin, and these are chemicals that will repel ticks and other mites, bugs from biting us. It’s interesting to note that the Armed Forces are now doing this with their clothes to protect our military.
Host: What are some adaptations that have made the Lyme disease bacterium so successful?
Dr. Kotsoris: Borrelia burgdorferi is quite an intelligent bacterium. Initially, when it first enters the bloodstream it … Actually, because of its shape, the corkscrew shape can penetrate into tissues like a roto-rooter machine. Likewise, the outer surface of Borrelia burgdorferi has a whole host of fatty substances and proteinaceous substances. These proteinaceous substances vary from strain to strain, and so it’s incredibly difficult for the immune system to be able to combat Borrelia burgdorferi effectively. In fact, Borrelia burgdorferi has adapted many mechanisms and actually hijack the immune system that cause certain antibody-producing cells not to operate effectively, so that the bacterium cannot be coated by antibodies and then can’t be mopped up by other immune-related cells in your body.
Understanding Lyme disease can be as complicated as the bacteria that causes it. Global Lyme Alliance is launching a podcast series to help make sense of it all. The podcasts will cover everything from basic Lyme disease facts to research initiatives.
The first podcast features GLA’s Dr. Harriet Kotsoris, Chief Scientific Officer, and Dr. Mayla Hsu, Science Officer. Dr. Kotsoris and Dr. Hsu help clarify some of the basic facts about Lyme disease, including symptoms and diagnosis. Below is an excerpt.
Host: In this series of podcasts we’ll answer a few common questions and unveil some surprising truths about Lyme disease. In this first podcast we’re hoping to cover some basic facts about Lyme disease. To get us started, Harriet, what exactly is Lyme disease?
Dr. Harriet Kotsoris: Lyme disease is an infectious disease that’s transmitted by a vector known as the blacklegged tick or Ixodes scapularis on the East Coast. Ixodes pacificus is on the West Coast. The disease is caused by a corkscrew shaped bacterium or spirochete known as Borrelia burgdorferi. It’s a multi-organ, multi-system disease. It’s acute onset may be heralded by an Erythema migrans or expanding bull’s-eye rash leading to flu-like illness consisting of headache, chills, fever, malaise, muscle aches and pains. Later stages of the disease can involve other organ systems of the body including the heart, brain, and joints. In it’s delayed or late disseminated phase it is particularly difficult and entrenched in the body, and more difficult to treat.
Host:What is the incidence of Lyme disease in America and around the world?
Dr. Kotsoris: The incidence of Lyme disease has been recently recognized to have grown exponentially. In the United States alone there are over 330,000 new cases reported each year. It is estimated that over 1 million in Europe have been affected by the disease and 1 in 25 people all around the world. These statistics come from European studies and actually one of our Scientific Advisory Board members, doctor Luc Montagnier, co-discoverer of the HIV.
Host:What are some of the tests used to diagnose Lyme disease? Are these tests dependable?
Dr. Mayla Hsu: The diagnostic test that is approved for Lyme disease testing here in the United States consists of 2 separate tests. The first is an ELISA or EIA Assay, and what that detects is antibodies that are specific for the Lyme bacterium, the Borrelia burgdorferi. Typically what happens is the person’s blood is drawn, and it goes through this first level of test and if it is positive or equivocal it goes through a second round of testing which is called the Western Blot. The Western Blot is a more specific test. It actually separates out the Borrelia burgdorferi proteins and then it looks for antibodies against 10 specific Borrelia proteins. There has to be 5 out of 10 possible antibodies against the bacteria that are present in the person’s blood for that test to be scored as a positive.
You asked whether or not these tests are dependable? Actually, they’re not, and that’s a big problem in Lyme disease because up to 60% of the two-tiered test negatives are considered to be possibly false negatives. We really don’t know in cases like that. If you get a Lyme disease test that’s positive, okay great. If tested positive now we can determine what your treatment is going to be, but if you test negative and you still have symptoms that are very much in line with Lyme disease it’s very hard to know if you were actually negative or not.
Below is the the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme disease, discussing diagnosis, treatment and prevention.
Follow Global Lyme Alliance on SoundCloud to hear future podcasts.
Global Lyme Alliance CEO Scott Santarella highlights key research initiatives in the 2015-2016 grants cycle.
Thanks to the generosity of our donors, Global Lyme Alliance has had an exceptionally productive year. We have awarded over $1 million in new research grants during the 2015-2016 grants cycle. This constitutes nine new studies, an all-time institutional high, by exceptional researchers at leading U.S. universities.
With 329,000 new cases of Lyme each year, and very limited federal funding, privately-funded research like GLA’s is more critical than ever. Without question, the quality of our Lyme research is second to none. GLA’s outstanding grantees are conducting exciting research in diagnostics, disease processes and potential treatments. In fact, our grantees are the paradigm busters who are closely followed by the rest of the Lyme community. Current grantees are:
Armin Alaedini, Ph.D., Columbia University, is identifying how antibodies change with disease progression in Lyme patients;
Nicole Baumgarth, DVM, Ph.D., UC-Davis, is analyzing how the immune system responds to Lyme bacteria;
Chris Janson, M.D., UI-Chicago, is focused on the neurological effects of Lyme;
Alla Landa, Ph.D., Columbia University, is studying chronic pain in post-treatment Lyme syndrome patients;
Kim Lewis, Ph.D., Northeastern University, has tested pulse-dosing antibiotics to more effectively treat Lyme patients;
Benjamin Luft, M.D., SUNY-Stony Brook, is developing new diagnostic tests;
Karen Newell-Rogers, Ph.D., Texas A&M University, is studying neurological Lyme disease in mice;
Eva Sapi, Ph.D., University of New Haven, continues her work studying biofilms;
Ying Zhang, M.D., Ph.D., Johns Hopkins University Bloomberg School of Public Health, is evaluating possible drug combinations for Lyme treatments.
Meanwhile, four distinguished new members have joined our Scientific Advisory Board. They are Catherine Brissette, Ph.D., University of North Dakota; Richard Goldstein, DVM, Chief Medical Officer, Animal-Medical Center; Andreas Kogelnik, M.D., Ph.D., director of the Open Medicine Institute, and Neil Spector, M.D., Duke University.
Our spectacular momentum comes down to a single, irreducible phenomenon: our donors. I hope you will join us at our 2nd annual “Uniting for a Lyme-Free World” Gala on Thursday, October 13, 2016, at Cipriani 42nd Street in New York City. As GLA’s new CEO, I look forward to meeting you at what promises to be a very special event.
Important steps to avoid tick bites, and Lyme disease, for a safer summer.
It’s the little ones that you have to watch out for. Case in point, an insect the size of a poppy seed: the tick. With summer here, the risk of these tiny bugs—and the diseases they carry—is hitting an apex.
Anyone who spends time outside is at risk of contact with infected ticks. They are most active in warm weather, so the risk of infection is greatest from April to September. Blacklegged ticks, also known as deer ticks, can transmit Lyme disease. About 300,000 cases are diagnosed each year, and the rates are increasing over time. The diagnosis rate has tripled over the past two decades, according to Global Lyme Alliance (GLA), a nonprofit working to advance knowledge and awareness of the condition.
Although the disease is not usually life-threatening, “believing that it’s not going to impact you is probably the worse type of thought process that someone can have,” Scott Santarella, CEO of GLA, said.
Ticks wait for hosts by resting on tips of grasses and shrubs. When a person or animal brushes against the tick, it climbs aboard. They slowly suck the host’s blood for days.
If detected early, most cases of Lyme disease can be effectively treated with antibiotics. If not, the disease can be debilitating, with potential to affect the brain, heart and other parts of the nervous system. This severe condition is known as chronic Lyme disease.
Thankfully, there are precautions that backpackers can take to protect against ticks. Follow these tips to stay safe from ticks and Lyme disease.
Conduct a full body check every evening. Ticks often hide in body folds, like underarms, in/around ears, inside belly button, behind knees, between legs or on the scalp.
Set up camp in less grassy or woody areas.
Use repellent on clothing and tent floor.
Try to keep the body covered by wearing pants (most effective if tucked into socks), a hat and insect shields.
Wear plain clothes that are light, so ticks are visible if they’re crawling on you.
Always carry tweezers.
If a tick is found, use tweezers to grip the head, slowly remove and thoroughly wash the infected area. Go to the doctor for a Lyme disease test.
This article, “Lyme Disease is Scary. Here’s How to Avoid It,” first appeared in Backpacker magazine.
Dr. Harriet Kotsoris, chief scientific officer with Global Lyme Alliance, answers this question and many more as a guest on “Steve Dale’s Other World,” a WGNPlus podcast, part of the StopLyme Campaign.
Steve Dale, a well-known Certified Animal Behavior Consultant and author, understands the effects of Lyme disease on our pets. But he wants to know, “What about the person at the other end of the leash?” And, if Lyme is considered an epidemic among veterinary parasitologists, what does the human medical community say?
In this podcast, Dr. Kotsoris shares with Steve what we know about Lyme disease, including diagnosis and prevention. According to Dr. Kotsoris, we must approach tick-borne diseases in three key areas–prevention, better diagnostics, and more effective treatment. One of the biggest gaps in the fight against this epidemic is the lack of an accurate diagnostic test. Without an accurate test, thousands of people are not diagnosed and receive no treatment.
No accurate test combined with the rapid spread of Lyme and other tick-borne illnesses, makes prevention a must, for both people and their pets. Lyme disease is now in all 50 states, not to mention more than 80 countries. The number of reported Lyme cases has now reached 329,000 in the U.S alone.
Increased prevention alone will not halt Lyme, and will not help those already infected. To develop effective treatments, including a vaccine for people, the need for research is greater than ever before. Unfortunately, despite the increased need, federal funds are limited. Global Lyme Alliance has gained national prominence for funding the most urgent and promising research in the field, focused on the development of an accurate and accessible diagnostic test, treatments for long-term Lyme, and a cure.
Listen to the entire podcast, and why Dr. Kotsoris believes more has been done to prevent Lyme in our pets than in people.
Dr. Harriet Kotsoris, Chief Scientific Officer, Global Lyme Alliance and Dr. Mayla Hsu, Science Officer, Global Lyme Alliance
It’s now 35 years since a corkscrew-shaped bacterium was identified as the cause of Lyme disease. But we still have no safe and effective vaccine, no reliable diagnostic test and no adequate therapy.
What we do have is tens of thousands of lives annually devastated by significant health, personal and financial costs.
The National Institutes of Health, the leading funding body for biomedical research in this country, should scale up research funding for Lyme disease. In its absence, nonprofit organizations like ours have taken up the challenge, while hundreds of thousands suffer in misery from a spring fever that for some may not end.
Lyme disease, first described more than 40 years ago, now infects more than 320,000 Americans each year, and has been identified in every state. Transmitted by black-legged tick bites that peak in the warm months, Lyme disease is now the country’s most common illness spread by a bug bite. Symptoms range from skin rashes to fatigue and joint pain, and for most people, a few weeks of antibiotics are enough to clear the infection. However, researchers at the Lyme Disease Clinical Research Center at Johns Hopkins University have shown that about 10 percent to 20 percent of those infected progress to chronic multi-organ illness, such as severe musculoskeletal pain, cardiac failure and neural impairment, including memory and cognitive loss.
Although the causes of post-treatment Lyme disease syndrome, or PTLDS, are unknown, its devastating toll is well-documented. It’s a condition that can mean months and even years of disability, with a tremendous impact on school attendance and employment. Researchers at the Centre for Infectious Disease Control in the Netherlands calculated more than nine years of healthy life lost in people with persistent Lyme disease. Recently, it was estimated that health care costs for Lyme disease patients exceed $1 billion per year, according to Dr. John Aucott of Johns Hopkins University School of Medicine.
Early diagnosis, then, should be key to reducing this health and economic burden. What complicates the treatment of all Lyme disease patients, however, is the lack of a definitive diagnostic test. The standard blood test detects antibodies that recognize the Lyme bacteria, which is called Borrelia burgdorferi. This test is laborious and lacks sensitivity, correctly identifying only 29 percent to 40 percent of patients who have a skin rash commonly associated with tick bites. Furthermore, at least 20 percent of patients do not even develop a skin rash.
The Global Lyme Alliance is pleased to issue a request for proposals (RFP) for research grants to be awarded in 2016.
The proposals must be aligned with GLA’s mission to study prevention, basic science, diagnostics and treatment of Lyme and other tick-borne diseases. We are interested in studies ranging from proof-of-concept that will potentially lead to federal funding, to research in areas of major deficiency. These include, but are not limited to:
• obstetrical and pediatric issues
• immune dysfunction
• animal models of tick-borne illness
• discovery of new antimicrobials and other treatment strategies for acute and chronic Lyme disease and coinfections
We welcome proposals from early-career investigators as well.
Proposals should be submitted via Grantmaker, an online portal that will become available on our website on June 1, 2016. The Grantmaker portal will be closed on September 15, 2016, and applications will not be accepted after that date. Awards will be announced in November 2016.
For nearly 20 years, Senator Richard Blumenthal has been a leader in the fight against Lyme disease and a strong supporter of those suffering from the illness. He introduced the Lyme and Tick-Borne Disease Prevention, Education and Research Act during his first year (2011) as a U.S. Senator and has been fighting for its passage ever since.
Global Lyme Alliance supports the efforts of Senator Blumenthal and asks that you reach out to your two U.S. Senators in support of S.1503, the federal Lyme bill sponsored by him. The bill is stuck in the Senate Health, Education, Labor, and Pensions (HELP) Committee, with only a few days left to “unstick” it. The HELP Committee has nearly completed its major Medical Innovation bill. (This is the Senate’s equivalent of the 21st Century Cures Act passed by the House, which included provisions of the Lyme bill.)
Our best and most realistic chance to pass Senator Blumenthal’s bill is to get the HELP Committee to add its language to the Medical Innovation bill as an amendment.
Right now, this week, HELP Committee Chairman Lamar needs to hear our voices.
We want to create a surge of phone calls to all senators this week. We need your help now, even if you have contacted your senators before.
If you live in Tennessee, please call Chairman Alexander right now, and ask him to add the Lyme bill’s language to his Medical Innovation bill as an amendment. His number is (202) 224-4944. (Please, only do this if you live in Tennessee.)
If you live in a different state, please call your two U.S. Senators and ask them to urge Chairman Alexander to add the Lyme bill’s language to his Medical Innovation bill as an amendment.
Find the phone numbers here. When you call, you will talk to an aide in your Senator’s office. Here’s what we suggest you say:
“Hello, I am a constituent and I’m calling to express my support for The Lyme and Tick-Borne Disease Prevention, Education, and Research Act, Senate Bill 1503. I urge the senator to ask Senator Alexander, Chairman of the Senate HELP Committee, to add the Lyme bill language as an amendment to the medical innovation bill his committee has been working on. Thank you.”
You can tell the aide more about your experience with Lyme if you want. Be respectful — remember you are asking for their help.
The March 31, 2016 issue of the New England Journal of Medicine published a study of antibiotic treatment for long-term Lyme disease (Berende et al.). Individuals were treated with a two-week course of intravenous ceftriaxone, an antibiotic, followed by additional oral medications or placebo. The study concluded that longer-term antibiotic therapy for persisting symptoms does not confer additional benefits beyond short-term therapy.
We disagree with the conclusions of this study for the following reasons:
This study compared shorter-term therapy (ceftriaxone followed by placebo) with longer-term therapy (ceftriaxone followed by more antibiotics), in patients with sustained symptoms. However, there was no “true” placebo group that was completely untreated. All three study groups reported significant, yearlong improvement in SF-36 scores, which measure health quality. The improvement could be attributed to the ceftriaxone given at the beginning, because even the group subsequently treated with placebo responded to the ceftriaxone after two weeks and beyond (Figure 2).
Since they observed no significant difference in outcome in the various treatment groups, the study’s authors concluded that there was no benefit from continued antibiotics. However, with this study design, it is impossible to conclude that long term antibiotics are ineffective for treatment of chronic Lyme disease, as reported and distorted by the lay press.
Doxycycline and clarithromycin, antibiotics used in two of the study arms, are poor at eradicating the antibiotic tolerant or persistent forms of Borrelia infection, which may be one cause of chronic Lyme disease (Feng 2015, Sharma 2015)
Hydroxychloroquine is a drug used to treat autoimmune diseases. This was given along with clarithromycin to one of the three study groups. If persistent symptoms of Lyme disease are due to immune system malfunction, then we should have expected additional improvement, beyond that of the other two groups, after the three month treatment period. This did not occur.
CDC diagnostic guidelines dictate that IgG, not IgM antibodies against Lyme bacteria indicate infection after the first 4-6 weeks. The patients in this study have had symptoms for more than two years. The authors do not explain why positive IgM was used as a criterion for inclusion into the study. These patients may be different than those who are positive for IgG.
No consideration was given to co-infections by other tick-borne pathogens as the explanation for continuing symptoms which would not have responded to the oral antibiotics used in the study. Furthermore, the Borrelia species in Europe, where the study took place, differ in virulence and symptomatology from those in North America, limiting the study’s geographic relevance to that location.
Global Lyme Alliance (GLA) is disheartened by the inaccurate reporting and superficial reading of this study by the media and lay press. GLA has never blindly endorsed long-term antibiotic use for people with continued Lyme disease symptoms. In fact, GLA supports evidence-based, rigorous research into post-treatment Lyme disease in order to discover more effective antibiotic strategies. We are disappointed that this flawed study has been accepted without critical judgment.
The position of GLA is simple – Until there is an effective cure, the treatment of patients with tick-borne diseases should be in the hands of the physician.
For over 17 years, GLA and its predecessor organizations have supported research on behalf of the Lyme community. We have three major goals. The first is to reduce the number of new Lyme cases through awareness. The second is to reduce the number of patients who go on to suffer from chronic symptoms by funding research that will hopefully lead to better and earlier diagnostics, resulting in prompt treatment and fewer treatment failures. The third is to fund meaningful research leading to a better understanding of the chronic condition and effective therapies.
There are many unknowns in Lyme disease and other tick-borne illnesses. However, these facts are indisputable:
There are over 300,000 new cases of Lyme disease every year in the United States, a number endorsed by the Centers for Disease Control and Prevention.
At least 10% to 20% of these patients go on to experience chronic symptoms, including chronic pain, fatigue and neurological issues (Aucott J, SLICE 1). Chronic outcome is correlated with delays in treatment, truncated treatment, poor antibiotic choice, and a potentially inappropriate immune response to the pathogen. Even at the low end, this means 30,000 new chronic cases annually.
Not every patient demonstrates a signature erythema migrans rash. We cannot rely on a rash to make the diagnosis.
Current diagnostic tests may miss up to 60% of patients with acute Lyme disease. There is broad acknowledgement that the current diagnostic tests are unreliable.
In conclusion, we need truly controlled, well-designed clinical trials to identify efficacious therapeutic options for individuals with long-term symptoms attributed to Lyme disease. Unfortunately, the study by Berende et al. was not such a trial, and does not convincingly rule out long-term antibiotic therapy as a treatment for persisting Lyme disease. The search for effective therapies, which may include new antibiotic strategies, will continue.
Global Lyme Alliance (GLA), the nation’s leading nonprofit funder of Lyme and tick-borne disease research and education, announced today that it has awarded a record total of over $1 million in grants to eight researchers focused on post-treatment Lyme disease syndrome (PTLDS) or “chronic” Lyme.
“Although GLA’s scientific agenda—the identification, treatment and cure of Lyme and other tick-borne diseases—remains the same, this grant cycle we strove especially to award exceptional researchers advancing the science of post-treatment Lyme,” said Harriet Kotsoris, M.D., GLA’s Chief Scientific Officer. “Even with 21 to 28 days of antibiotic treatment, nearly 20 percent of Lyme patients exhibit persistent and debilitating symptoms such as fatigue and pain. We need to understand why.” In announcing the new grants, Dr. Kotsoris noted that GLA had received the most grant applications in its history—almost $3 million in funding requests.
“While we were pleased to receive so many quality grant applications this year, such a profusion underscores the fact that there are far more scientists competing for grants than there is funding to support them,”she said. “Federal funding of Lyme is, in fact, minuscule, yet the Lyme threat keeps growing. This speaks to the importance of GLA’s critical role in working with private donors to drive advancements in the field.”
The resulting GLA 2015-2016 grant portfolio is “outstanding,” Dr. Kotsoris said. “The quality of the proposals and funded grants continues to increase every year.”
The eight grants were awarded to: Armin Alaedini, Ph.D., Columbia University, NY; Nicole Baumgarth, D.V.M., Ph.D., University of California, Davis; Alla Landa, Ph.D., Columbia University, NY; Kim Lewis, Ph.D., Northeastern University, Boston, MA; Benjamin Luft, M.D., State University of New York, Stony Brook; M. Karen Newell-Rogers, Ph.D.,Texas A&M University; Eva Sapi, Ph.D., University of New Haven, CT, and Ying Zhang, M.D., Ph.D., Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.
“GLA is proud to support the innovative research being conducted by some of the best and brightest men and women in the field today,” said Dr. Kotsoris. “We believe that the exceptionally talented scientists being funded by GLA will greatly contribute to advances in identifying the causes of PTLDS, how to reverse it, and especially how to treat the persistent infection.”
Among the projects being supported by GLA is the first human clinical trial for pain and cognitive impairment in chronic Lyme sufferers. The trial will be conducted at Columbia University under the direction of Dr. Landa.
Researchers were selected following a rigorous evaluation process using guidelines established by the National Institutes of Health (NIH). Each proposal was evaluated by Grant Review Committee members of GLA’s Scientific Advisory Board and met the same scientific standards that NIH applies to its own grant review process. The resulting 2015-2016 grant awards represent projects judged to have exceptional prospects of delivering measurable advances.
Lyme disease is the most common vector-borne disease in the U.S. with some 329,000 new cases reported in the United States each year, according to the Centers of Disease Control and Prevention. There are no accurate diagnostic tests for Lyme, no tests to prove that Lyme bacteria are eradicated or that an individual is cured. Some 15 to 20 percent of individuals with Lyme end up with long-term health problems.
About Global Lyme Alliance
Global Lyme Alliance is the nation’s leading tick-borne disease organization dedicated to supporting Lyme and tick-borne disease research and education. The 501(c)(3) nonprofit is headquartered in Greenwich, CT. For more information, call 203- 969-1333.
1. Lyme is the fastest growing vector-borne disease in America. Source: CDC 2014
2. Over 329,000 new cases in US alone each year according to the CDC – that is 38 new cases each hour.
3. Children are at the highest risk of contracting Lyme disease, especially at ages 3-14. Source: CDC 2013
4. Tick-borne diseases have been reported in every state in the US and in 80 countries. Source: CDC 2013
5. Lyme-infected ticks have been found in NYC parks. Source – NYC Dept of Health and Mental Hygiene, 2015
6. Lyme disease can cause over 300 different symptoms.
7. Even when acute Lyme is treated in a timely and recommended manner, 20-30% patients will fail treatment and go on to develop chronic Lyme disease (Source – Dr. John Aucott, SLICE I study 2008)
8. The average nymph tick is smaller than a pinhead –less than one millimeter, or 0.04 inch. Yes, that is 4/100 of an inch!
9. Treatment of Lyme disease costs $1.3 Billion per year in the United States. Source : Dr. John Aucott, Lyme Disease Research Foundation, 2015
10. NIH funding for Lyme research is $23M; it funds only 15% of grant applications. AIDS receives 144 times more funds at $2,898M, sleep disorders – 11 times more funding at $229M and obesity 40 times at $812M. Source – NIH funding 2013 actual.
11. Studies conclude that commonly-used testing misses 55% of positive Lyme cases. Source – Johns Hopkins University, 2015 (Coulter,et al.,J Clin Microbiol 2005;43:5080-5084).
12. Research suggests that Lyme disease and other infections can be spread from mother to baby during pregnancy. Source: CDC 2015
13. Lyme disease is often referred to as “The Great Imitator”, as it can imitate symptoms of many diseases.
14. Average time for patient diagnosis – 2 years and more than 5 doctor visits.
15. Only a minority of people with Lyme disease remember a bulls-eye rash. Source : NIH
16. There are no tests to prove that a patient is cured of infection after treatment. Source : NIH
17. Health insurance often doesn’t cover the treatment for Chronic Lyme disease.
18. There is no approved vaccine against Lyme disease. Source: NIH
19. Tick-borne diseases can be spread by deer, squirrels, birds and mice. Source: NIH
20. Testing for Lyme may be misleading, as false-negative rates are as high as 60% in the first 2 to 4 weeks of infection. Source: NIH
21. Neurologic Lyme disease can be indistinguishable from multiple sclerosis, Alzheimer’s disease, Lou Gehrig’s disease, fibromyalgia and Parkinson’s disease. Source : Harriet Kotsoris, MD
22. GLA is one of the largest private supporters of Lyme disease research, dedicating over $7 Million to research to date.
May is Lyme Disease Awareness Month and we’ve launched a Bite Back Against Lyme campaign in partnership with Heather Thomson, one of Bravo TV’s “Real Housewives of New York City.”
Thomson, who has never had Lyme disease but said she has “pulled many a tick off of myself and my family,” says she “stands for the bitten, but I represent the unbitten.” An outdoor enthusiast, Thomson said she wants to help GLA “take back the outdoors.”
In an effort to raise awareness about how vulnerable individuals and families like her own are to Lyme and other tick-borne illnesses, she will do three brief grassroots videos and tweet Lyme prevention tips to her followers throughout the month.
“My family and I have escaped any issues because of awareness and education. We check ourselves regularly [for ticks] and take action swiftly,” said Thomson, who has a home in the Berkshires. But “I know countless others, several of whom have gone undiagnosed for too long, creating severe complications and concerns. They never saw a tick, never saw a rash, and never had a clue of this tiny but mighty insect that had infected them.”
Among those suffering is Thomson’s Bravo TV colleague Yolanda H. Foster, of the “Real Housewives of Beverly Hills” franchise, who has publicly shared her battle with Lyme disease. Foster was first diagnosed with Lyme disease in 2012 and recently called her ongoing struggles with Lyme-related neurological issues a “nightmare.”
Lyme disease is the most common vector-borne disease in the U.S. with over 300,000 new cases diagnosed in the U.S. each year, according to the Centers for Disease Control and Prevention (CDC). When caught early, Lyme can usually be treated successfully with antibiotics. However, there are no reliable diagnostic tests for the tick-borne disease, no tests to prove that Lyme bacteria have been eradicated or that an individual is cured.
According to the CDC, up to 20 percent of individuals treated for Lyme fail the short-term treatment and become chronically ill. They continue to experience symptoms such as severe arthritis, persistent fatigue, impaired vision, memory loss and other cognitive problems.
“We’re delighted that Heather wants to raise awareness about Lyme disease,” said GLA Chairman Robert Kobre. “Awareness and prevention are the best weapons against tick-borne diseases. We appreciate what Heather’s celebrity can bring to the cause.”