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GLA Disagrees with NEJM Study Conclusions

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:

  1. 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).
  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.
  3. 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)
  4. 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.
  5. 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.
  6. 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:

  1. 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.
  2. 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.
  3. Not every patient demonstrates a signature erythema migrans rash. We cannot rely on a rash to make the diagnosis.
  4. 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.

New Grant Awards Gla’s Largest Ever!

GLA Awards Over $1 Million In New Grants!

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.

Top 22 things you probably don’t know about lyme

Top 22 Things You Probably Don’t Know About Lyme

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.

Rhony Heather Thomson Biting Back Against Lyme Disease

‘Rhony’ Heather Thomson “Biting Back” Against Lyme Disease

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.”

10 Top Myths About Lyme Disease

10 Top Myths About Lyme Disease

Lyme disease has become one of the fastest growing epidemics in the nation. According to the Centers of Disease Control and Prevention, there are more than 329,000 new cases in the U.S. each year. But getting the facts about Lyme disease isn’t always easy.

Here are some of the biggest “myths” about the illness—and the information you need to protect yourself, your family and pets from tick bites so you can safely enjoy the outdoors.

Myth #1:  Lyme always causes a bulls-eye rash.

FACT:  Although most people associate Lyme disease with the bulls-eye-shaped “erythema migrans” (EM) rash, less than 50 percent of patients develop one. Early stage Lyme may manifest as a mild flu-like illness with a headache, a stiff neck, or a rash that’s so pale or oddly positioned that it’s barely noticeable. If you get a rash, it’s just as likely to look like a simple rash that is easily mistaken for a skin infection or spider bite.

Myth #2: Lyme is an East Coast illness only.

FACT: Although it’s more prevalent in the Northeast and Midwest, Lyme disease has been reported in all 50 states and is a problem around the globe. It is endemic in parts of Europe and Asia, Australia and Canada, and is even found in the Amazon region of Brazil.

Myth #3: You’ll know when you’ve been bitten by a tick.

FACT: Ticks have a numbing agent in their saliva so you don’t feel anything when one first bites you. You probably won’t even know a tick is feeding. Most people don’t ever recall seeing a tick latched onto them.

Myth #4: Ticks die in winter.

FACT: Many people believe that ticks die in winter, but that’s not true. Temperatures have to drop below 10 degrees Fahrenheit for a long time in order for ticks to start dying, and thanks to climate change that’s not the reality even in the northern states anymore. Although this past February was the coldest month on record for many Northeast and Midwest areas, the heavy snows paradoxically provided a layer of insulation for blacklegged ticks that are now questing for blood as the weather warms up.

Myth #5: You have to be near deer to be exposed to deer ticks.

FACT: If you don’t see any deer and think the coast is clear, think again. Blacklegged ticks (commonly called deer ticks) carry the bacterium that causes Lyme disease. They feed on small mice, chipmunks, squirrels, rabbits, birds, deer, and even on dogs and cats

Myth #6: Ticks fall from trees.

FACT: Ticks don’t jump, fly, or drop from trees. They crawl up. If you discover a tick on your head or back, it’s probably because it latched onto your foot or leg and crawled up your body and not because it fell off a tree branch. Minimize your exposure by tucking pant legs into socks and shoes, wear long-sleeved shirts, and tuck your shirt into pants to keep ticks on the outside of clothing.

Myth #7: Hiking and camping are the most common ways to catch a tick-borne disease.

FACT:  It’s important to make tick bite prevention an important part of your outdoor plans whether you are gardening, camping, hiking, biking, or just playing outdoors. Although black-legged ticks live in moist and humid environments, particularly in or near grassy or wooded areas, they will cling to brush and shrubs and live in lawns and gardens, especially at the edges of woods and around old stone walls.

Myth #8:  If the blood test is negative, you don’t have Lyme. 

FACT:  Tests for detecting Lyme disease are often inaccurate. At present, your doctor will probably recommend two-tiered blood testing requiring a positive ELISA test result. Doctors commonly order an ELISA first to screen for the disease, then confirm it with a Western Blot. The ELISA measures the total amount of antibodies produced by the body in response to the Lyme bacterium (Borrelia burgdorferi). However, it may miss over half of Lyme cases because antibodies may not be high enough yet to detect, giving a false-negative result. 

Myth #9: Antibiotics cure everyone within two to three weeks.

FACT:  Studies show that as many as 20 percent of patients continue to exhibit symptoms even after they complete antibiotic treatment. What’s more, many of these individuals turn out to have co-infections transmitted by the same ticks that gave them Lyme. These co-infections don’t always respond to treatments for Lyme disease itself.

Myth #10: You can remove a tick with a match or by painting it with nail polish

FACT:   Forget any advice you’ve heard about holding a match to the end of a tick, swabbing it with nail polish or suffocating it with petroleum jelly.  You want to remove an embedded tick from your body. The easiest and safest way is to pull it gently out with tweezers. Grasp the tick close to its head, then slowly lift it away from the skin. Don’t twist or jerk the tick; this can cause the mouth parts to break off and remain in the skin.