I recently read a great article called, “The Six Stages of Chronic Lyme Disease” on a blog called Lyme Knowledge (see article here), and it gave me goose bumps as I have discussed this with many other sufferers of chronic Lyme disease. Continue reading
The word is out. Every indicator from acorns to temperatures indicate a record year for ticks – not just in the northeast but across the country. Continue reading
by Jacki Waters
Feelings of sadness, anger, and frustration are common when you’re in pain, but when pain continues for months or years, every day can feel like a struggle, and the joy of life slowly starts to fade. Continue reading
by Diane Solari
It’s no secret – Lyme disease has become a major health issue in the past decade. It shouldn’t come as a surprise, as some top physicians consider it the perfect disease. Continue reading
For most sufferers of chronic Lyme disease neuropathic pain is the hardest symptom to deal with. Driving most to opiates and anti-anxiety medications, the severe pain induced by nerve inflammation can come and go at any time and is most often debilitating. Continue reading
By Diana Pryor, CNBC news associate
While the medical and health community is putting a spotlight on diseases like Zika, Ebola and tuberculosis, another disease, transmitted by ticks, is getting little notice: Lyme disease.
The ticks that carry Lyme disease are spreading rapidly across the U.S. and are now located in nearly half of the country. The CDC estimates that 300,000 Americans are infected with Lyme disease. But the number of sufferers may be much higher, some Lyme disease experts believe. About 2.8 million have been diagnosed and a whopping 1.55 million are suffering lingering effects from the disease, also known as chronic Lyme disease or Post-Treatment Lyme Disease Syndrome, according to Dorothy Kupcha Leland, vice president for education and outreach for LymeDisease.org.
That’s a medical crisis when you consider that 40 percent of Lyme patients suffer from long-term health problems that can include brain and nerve damage as well as spinal cord and heart problems. Actor and songwriter Kris Kristofferson’s Lyme disease diagnosis made headlines a few months ago when he was originally misdiagnosed as having Alzheimer’s.
Taking care of these patients is costing the health-care system between $712 million and $1.3 billion a year, according to researchers at Johns Hopkins Bloomberg School of Public Health.
Part of the problem is that Lyme disease is very hard to detect and the testing is not always accurate. Many sufferers show no symptoms until it is too late for a single course of antibiotics to work. Current testing looks at the response of the patient to the disease rather than looking at the presence of the disease in the body. The symptoms of the early stages of Lyme disease, such as fatigue and joint pain, also mimic the symptoms of other diseases, such as arthritis, which make it hard to diagnose correctly. That’s why it typically takes two years and five doctor visits before most patients get diagnosed, reports the International Lyme and Associated Diseases Society.
In response, researchers are developing new tests to detect the crippling disease that can cause long-term effects such as brain, nerve, spinal cord and heart problems due to misdiagnoses.
Ceres Nanosciences, a diagnostics company in Virginia, has developed the urine-based Nanotrap Lyme Antigen test for detecting Lyme disease. The revolutionary technology could help in detecting other diseases, like Ebola and tuberculosis, which is why the Bill and Melinda Gates Foundation has given over $1 million to the company for research. Just last week the company announced it plans to begin Series A funding for $9 million, $3 million of which it already has, to put toward funding a market release of the test. The funding will be used to help get FDA approval.
The test is revolutionary because of its nanotrap technology, created at George Mason University. Previous urine tests in the market were not successful, because they could not measure the Lyme antigen that the infection produces in the urine at the level that nanotrap technology can, said Ross Dunlap, co-founder and CEO of Ceres.
Dunlap said the company was inspired to create the test because they saw how dissatisfied the general public was with the current two-tiered testing for Lyme disease, the ELISA and western blot methods. In 2013, Virginia became the first state to require doctors treating patients with Lyme disease to disclose in a statement the inaccuracies with the current available testing before they are tested.
“The two types of testing are certainly not perfect,” said Dr. Paul Mead, chief of epidemiology and surveillance activity at the Centers for Disease Control and Prevention. He said that the immune response to the infection may take four to six weeks to develop. Which means that people tested before four to six weeks may test negative for the infection when the antibodies haven’t had enough time to develop.
A proper diagnosis in the early stages could mean the difference between successfully treating the patient with an initial round of antibiotics or having them live with lingering effects of the disease for years.
This is not the first urine antigen test on the market. For decades there have been many companies who have tried to use urine-based testing and have failed, Dr. Mead said. Past urine tests have failed because they were not concentrated enough and were unable to measure the small antigen amount that is present in the urine.
What’s so scary about Lyme disease is how it infiltrates the body and slowly disturbs the immune system. Lyme disease is an infection caused by the bacteria Borrelia burgdorferi that can affect any organ and system of the body. Blacklegged ticks are known to transmit the infectious disease. Because their bites are not painful, people can be infected with the disease without knowing it. The only sure way to recognize an infectious tick bite is to notice the erythema migrans or bull’s-eye rash. However, less than 50 percent of people who are bitten notice a rash, according to Dr. Samuel Shor, the president of International Lyme and Associated Diseases Society.
There are five subspecies — more than 100 strains in the United States and 300 strains worldwide of the bacteria — according to the ILADS website. These different strains allow the bacteria to evade immune system detection. The bacteria, in some cases, can alter its protein coat. If the bacteria cannot be identified properly, it stays in the body for a longer period of time and continues to change structure. This accounts for many false positives in the testing of Lyme disease.
According to the CDC, untreated Lyme disease in pregnant women can be dangerous to unborn children. If left untreated, Lyme disease during pregnancy may infect the placenta and could also cause possible stillbirth. The recommended antibiotic treatment is encouraged for pregnant women who have tested positive for the disease. Children are also prone to the disease because they generally spend long periods of time outside. They are also treated with the same form of antibiotic treatment.
It’s very difficult to measure the antigen because there is a very low concentration of it in the urine, Dunlap said. Localized and concentrated nanotrap technology greatly increases the sensitivity of Lyme antigen detection, which makes it easier to detect and therefore treat. (The Journal of Translational Medicine published a study using the test, which can be found here.)
The nanotrap technology looks for the biomarker of the infection — a vastly different approach from the current two-tiered method that tests the antibodies. Antibodies are made by the body in response to a disease and show whether or not a patient has been exposed to an infection, not the infection itself, said Dr. Shor. Early stage detection is crucial for patients suffering from Lyme disease, and it’s the same stage that the nanotrap technology is designed to work best in.
It’s hoped new technology will dramatically help detection so they can start treatment — with antibiotics — as early as possible. This is critical since the bacteria that causes Lyme disease is known to morph itself into different strains and some doctors worry it may turn into superbugs in patients exposed to long-term antibiotic use.
After a decade-long research effort the genome of the deer tick has been sequenced by an international team of scientists, including researchers from the University of Geneva Medical School and the SIB Swiss Institute of Bioinformatics. Continue reading
by Helen Young
Smart watches are popular portable devices used to measure everything from the number of steps we take per day, to our physiological parameters. But now, it seems that they can also warn of the onset of complex diseases, including Lyme disease. This finding is based on a new study carried out by researchers from Stanford University, published in prestigious journal, PLOS Biology. Continue reading
It is being called “Rewriting the Code of Life” according to a recent article in New Yorker Magazine. The idea is to manipulate DNA code in individuals to make us immune to certain diseases like cancer and yes, even Lyme disease. Continue reading
Have you heard about LDN (Low Dose Naltrexone) for chronic Lyme disease? I am excited to say that I have been taking it successfully for chronic pain although it took awhile to kick in. Continue reading
We made it through another year! It has been awhile since I posted about my own journey, and I thought this was a good time to share my personal progress, and encourage the many people who seem to be stuck in chronic illness. Continue reading
Cats Claw is a vine commonly known as Una de Gato and is used traditionally in Peruvian medicine for the treatment of a wide range of health problems, particularly digestive complaints and arthritis and to treat wounds, stomach problems, cancer, and more. Continue reading
Fantastic news regarding Lyme prevention this week – the Medical University of Vienna along with partners have developed a antibiotic gel (azithromycin) which combats Lyme disease if used within 72 hours of being bitten. Continue reading
Lyme carditis is a stealthy and deadly form of Lyme disease that gets little to no attention. Many people with heart disease have no idea that their heart problems are caused by Borrelia – or Lyme disease.
A new book on chronic Lyme has hit the streets and this one is worth reading. Written by Allie Cashel, the story chronicles her journey navigating the pain and suffering of chronic Lyme and ultimately the positive transformation in her life. Continue reading
We know that Lyme disease is a stealth pathogen, and we know that it can infect the heart and cause heart carditis. But for some this occurs unknowingly and can cause death and/or heart disease. Continue reading
Today, Lyme disease vaccines currently exist for dogs, but none have been approved for humans in nearly 15 years — and in that time the disease has grown into a world-wide epidemic. Continue reading
For those who missed the news, Massachusetts lawmakers voted this year to require insurers to cover long-term antibiotic treatment of Lyme disease in spite of a governor’s veto and doctor objection. Continue reading
Tom Balsamides, an award-winning filmmaker, witnessed the debilitating effects of Lyme disease on his wife Tamara, who struggled for 10 years without a diagnosis and another five until she regained her health and her life. See trailer below… Continue reading
The 1st annual conference “Lyme Disease in the Era of Precision Medicine” was hosted in October 2016 by Mount Sinai’s Institute for Next Generation Healthcare. This unique event sponsored by the Steven & Alexandra Cohen Foundation: Lyme Disease Initiative, focused on opportunities to apply emerging paradigms of precision medicine and network biology to advance understanding and treatment of Lyme disease.
Canadians with Lyme disease, like Australians, have been ridiculed for decades over the idea that they could contract Lyme disease in a place that doctors insisted it did not exist. Continue reading
FOR IMMEDIATE RELEASE
Newswise — Johns Hopkins University received a $10 million grant from the Steven and Alexandra Cohen Foundation to explore Lyme disease and develop potential new therapies to address the illness. Johns Hopkins is the only institution in the nation to receive multiple Lyme disease grants from the foundation.
The grant will be divided among three Johns Hopkins research teams led by John Aucott, M.D.; Ying Zhang, M.D., Ph.D.; and Brian Schwartz, M.D.
John Aucott, M.D.
John Aucott, M.D., assistant professor of medicine, and colleague Mark Soloski, Ph.D., professor of medicine, both of the Johns Hopkins University School of Medicine, received a five-year grant for $6 million to support the continuation of the Johns Hopkins Lyme Disease Research Center’s Study of Lyme Disease Immunology and Clinical Events, a longitudinal effort that identifies patients at the onset of Lyme disease, initiates standard treatment and follows them over a one-year period. The aim is to characterize those patients that develop post-treatment Lyme disease syndrome and analyze the immunological pathways triggered as the disease progresses in those patients.
“This grant allows us to expand our research and gain a better understanding of the disease,” Aucott says. “It also allows for greater diversity among participants so we can get more substantive information that can inform future developments in the field of Lyme research and discovery.”
Aucott and Soloski’s work will involve detailed clinical, immunological and molecular profiling, and will be done in collaboration with Joel Dudley, Ph.D., assistant professor of genetics and genomic sciences and director of biomedical informatics at the Icahn School of Medicine at Mount Sinai, in New York City. Dudley will support Aucott and Soloski by developing high-level computer modeling that will aid in the analysis of the large data sets.
With support from the grant, Aucott, director of the Johns Hopkins Lyme Disease Research Center, plans to open a new research site each year of the grant. For year one, he has already begun expanding the Green Spring Station clinical research site in Lutherville, Maryland, nearly doubling the number of exam rooms. Aucott also plans to build a Lyme research clinic at Johns Hopkins Bayview Medical Center. For the second year, he is looking to set up a site in Howard County, Maryland. For year three, he hopes to expand into Pennsylvania. His plans for years four and five will explore sites throughout the East Coast.
“As Lyme cases continue to increase in the U.S., there is an increasing need to understand the disease and its outcomes,” says Aucott. “We have no way of predicting who will recover and who won’t. This grant will allow us to explore why post-treatment Lyme disease syndrome exists, the mechanisms behind the disease and the pathways through which it causes symptoms so that one day, we can use that information to develop ways to prevent the disease or develop more effective drugs. Currently, we don’t have a full understanding of the disease or the most effective ways to treat those it impacts.”
Ying Zhang, M.D., Ph.D.
Ying Zhang, M.D., Ph.D., professor of molecular microbiology and immunology at the Johns Hopkins Bloomberg School of Public Health, received $2.5 million from the foundation for a five-year grant that will allow him and his team to test potential new ways to treat Lyme disease. The grant will support Zhang’s efforts to develop optimal drug combinations to more effectively combat post-treatment Lyme disease syndrome, focusing on developing effective oral drug combination regimens. First, Zhang and his team will develop an oral version of a triple-drug combination that currently is only available through IV. The oral drug combinations will then be tested in vitro (test tube) for effectiveness against Borrelia persisters using novel methodologies recently developed by his group. Next, the drug combinations will be tested in a mouse model of persistent Lyme disease to confirm efficacy, followed by validation in a monkey model, to be performed by his collaborator Monica Embers, Ph.D., from Tulane University.
“This grant is very important for us because it provides stability to the Lyme research program here at Johns Hopkins,” Zhang says. “It will allow us to advance potential new and more effective therapies for this complex and intriguing disease. There is currently no therapy available that effectively treats post-treatment Lyme disease syndrome. “We may be able to fast-track the development of new and better ways to treat the disease.”
Brian Schwartz, M.D.
Brian Schwartz, M.D., professor in the Department of Environmental Health and Engineering at the Johns Hopkins Bloomberg School of Public Health, received more than $1 million from the foundation to conduct a three-year, two-phase investigation of Lyme disease in Pennsylvania, one of the hardest-hit regions for the disease.
In phase I, Schwartz and colleagues will conduct a large-scale, population-based study of the epidemiology of Lyme disease using data from electronic health records from the Geisinger Clinic. These data are available for over 500,000 patients from 2001 to present. Schwartz and colleagues will link that information to community data on land use and land cover — for example, agricultural land, forested land and low-density suburban development. In addition, Schwartz will evaluate populations vulnerable to Lyme disease, delayed diagnosis and treatment by looking at these features by age, sex, race/ethnicity, family socioeconomic status, community socioeconomic status, and a variety of other community and environmental variables.
For phase II, a questionnaire-based study will be performed to assess vulnerabilities within the population. This will include aspects of individual, occupational and community risks, as well as an assessment of people’s knowledge, attitudes and practices regarding Lyme disease diagnosis, treatment and long-term prognosis. Investigators will also analyze who is getting Lyme disease and why, how long it takes until diagnosis, and appropriate treatment. This research will allow for the evaluation of Lyme disease risk, and assess diagnosis and treatment patterns, with a goal of identifying new management strategies to address Lyme disease.
Discovered more than four decades ago, Lyme disease has now spread rapidly throughout the East Coast and Midwest. It is estimated to afflict more than 300,000 people per year, becoming the sixth most common reportable infectious disease in the U.S. However, little is understood about the complex pathogenesis of the disease, which costs the U.S. economy up to $1.3 billion per year in treatment costs alone.
Copied from Newswise press release
Spaulding Hospital, ranked 5th in the country among rehabilitation hospitals by US News & World Report has opened a special center for chronic Lyme disease in Boston Massachusetts, to deal with the Lyme epidemic in the Boston area. Continue reading
by Daniel Cameron MD MPH Continue reading